Diagnosed with CIDP and not treated as of yet
AnonymousJuly 7, 2008 at 9:01 am
After having alot of problems over the last 5-6 years and after formally approaching these problems, It has taken over two years to obtain a diagnosis of CIDP. It took 3 neurologists, 10 MRI’s, 3 CT Scans, 1 spinal tap
3 EMG’s, lots of X rays and many many blood works. Finally after going to the Hopital of the University of Pennsylvania, An experienced neuromuscular MD
told me what I suffer from is most likely CIDP. He advised not to jump into the various treatments so fast and wanted to wait 4 months to see how my body handled recovering or if I became weaker, to call right away. I go back in two weeks. I havn’t recovered that great but did recover some strength and sensory loss is not as bad as it had been at the peak.
I can walk for 30 minutes, but have bilateral numbness in both legs below the knee’s, can’t toe or heal walk, minor LH facial numbness, numbness in both hands in tips of first three fingers. Other than that I am very healthy. Good BP and vitals all blood work is perfect.
Testing has indicated that I have 2 area’s of demylination plaque on the LH side of the Brain MRI.
The 6 month follow up Brain MRI in June 2007 indicated no changes.
Lumbar punch did not have elevated protein as of Dec 2006.
A Dec. 2006 EMG indicated active denervation occuring in both leg.
The March EMG showed approx 10-15% damage but that it was indolent at the time.
I am asking for anyone’s opinion about delaying treatment. With what is a progressive disease, how can avoiding treatment help? I am not sure if the
Neuro MD just wants to make sure by waiting the 4 months or if he is going to try and steer me away from treatment for now because I am still relatively mobile. Or if the Dr wants to note some potential improvement to solidify his diagnosis.
This Dr. is listed on the GBS-CIDP Medical Adbisory Board. His Name is Dr Mark Brown. Do any of you know him or have used him? He is up in age and seemed very very professional and knowledgeable. He is a professor and 1966 Grad. He basically teaches to budding neurologists. Anyway,
Why wait til the disability gets worse?? I am very confused about all this and would appreciate any input from those who have been there.
Thank you all very much. tim
July 7, 2008 at 12:34 pm
No clue why he would wait. If it has taken 5-6 years for your symptoms to get to this point, I would ask when you go back if he is suspecting you have the progressive varient as opposed to the relapse/remitt. type. Whichever it is, ivig would be the course of treatment. The only thing I could think of is that he would like to gauge your symptoms from his first assesment he has just made and compare it to the next appointment. Perhaps if he does not see much difference, he might assume it is progressive. I have given up figuring out why docs do what they do. It gets to a point that you have to take matters into your own hands and either convince the doc to start ivig, or take your records w/ the dx and move on to the next doc and hope for treatment. Did you ask him what his reasoning was for the delay? As I mentioned, either form of cidp would use ivig. Relapse/remitt would react sooner and you would notice some difference sooner than you would w/ progressive. I wish you luck in getting treatment soon, the longer you wait, the more damage, and some damage cannot be repaired once it gets to the axons.
Dawn Kevies mom
AnonymousJuly 7, 2008 at 1:34 pm
As to asking why the neuro has not treated me. I am not sure what the doctor is after for waiting now 4 months. He is aware that I had a bout of severe pain in my legs over 12 yrs ago that went away on its own. Also I devleoped LH foot weakness since then and within the last 4 years. The current conditions of severity were prompted by LUBAR Surgery at two levels
performed June 07. This is when I went down hill and my condition has worsened since then. They had me doped up on Nsaids and that just masked
the severe nerve imflammation. Then the Liver ALT/AST went off the chart so they stopped that.
I was really suffering from CIDP the whole time and probably underwent L4, L5 L5 S1 surgery for nothing.
With all that said, I don’t know if I have been categorized with progressive or
relapsing/remitting type. I go through times of heightened sensitivity in my legs with stabiltiy afterwards, then get these 4-5 day back aches where my symptoms seem to increase. I am totally open for comment. Let it Fly!
Thanks everyone. This site has been a huge help in understanding what I face and has better prepared me for my next visit with Univ of PA.
Have the best day you can. tim
AnonymousJuly 7, 2008 at 4:07 pm
I am in the category of “probably having CIDP”. My MRI’s, EMG’s, blood tests and lumbar puncture came up with negatives. My symptoms are those of CIDP. I have had many of these symptoms for 13 years (majority of Dr’s saying it was just in my head) but it wasn’t until this year that I finally found a decent Dr and got my “probable” diagnosis. In Feb/Mar I could not walk, since then I have progressed to a cane (all while not being treated). My Dr initially did not want to treat me as he wanted to run tests and did not want them to interfere with the results. I also believe that he wanted to see if I improved (I always improve after bouts every year, but I think he wanted to see for himself). It is the fact that I do improve to some extent or another that made him “confident” that I had CIDP. Unfortunately, due to lack of positive tests, the insurance company will not easily let me get IVIg. This may be what direction your Dr may be going to IF your tests were inconclusive/negative as mine were. I was able to finally start a treatment course on steroids as insurance would pay for those. This was another reason I believe my Dr waited to be more confident of his “diagnosis” as steroids have so many side effects (many long lasting or permanent) that they were his last resort. He wanted to be sure of my disease before he gave them to me. Since I was spontaneously recovering before the steroids, I can not tell if the steroids are helping, BUT I am hoping that it will be the way we convince the insurance company that I do have this disease and then maybe I can get IVIg instead.
In some cases, such as mine, there is no clear way to prove to the insurance companies of what disease we have and because of such Dr’s need to become creative in getting us treatment.
July 7, 2008 at 6:47 pm
Kristin and Tim,
Has the doc written a letter showing improvement with steroids? If so, perhaps this could be proof that you do improve with treatment. Everyone knows the side affects long term with steroids. I have a medical abstract that states long term, ivig is a safer and cheaper way to treatcidp because of the long term side affects from steroids.
Regarding the wait and see approach and getting better on your own. That is very risky, as some of what you loose with each relapse may never come back. Also, although this procedure is not really used much any more and can be difficult to heal from with some amount of permanent pain for some, you could get a nerve biopsy . If there were continuing demylienations occurring, due to cidp, they would be visible on the biopsy by way of layering which is representative of each attack, healing, and new attack. it is called onion bulbing as it is like the layers of an onion. Some on the site have had it and regret it, others had no problems. If it were my only recourse to get ivig and risk further permanent nerve damage, I personally might consider it. Tough choice. Good luck in your journey.
Dawn Kevies mom
AnonymousJuly 7, 2008 at 7:39 pm
In my case I just started the steroids 5 weeks ago. I will see the dr during week 7 so he can be updated on my progress. I am hoping that he will be able to use my info to talk to the insurance co. As for a nerve biopsy, my dr told me that due to the length of time of my illness (13 years) that it could be very likely that no positive results would be seen. So I guess we weren’t surprised when the lumbar and EMG were negative. I opted out of the nerve biopsy due to th fact it was highly likely to be negative too plus I just got rid of 13 years of moderate body pain and didn’t want the possibility of new pain starting in the excised area. Not the choice most would make but it is one that I have chosen.
I am just wondering if Tim’s Dr is also hitting this same route…or perhaps not…and then it is time for a new Dr (heaven know I have had my fair share of bad ones).
AnonymousJuly 7, 2008 at 7:59 pm
If you indeed have CIDP than delaying treatment if not a very good idea. I would seriously ask your doctor to explain why he wants to wait to treat a [I][B]chronic inflammation[/B][/I]. The nerve damage can repair itself if it caught in time. If the damage progresses, it can reach a point where it can not repair itself and become permanent. Time is not on your side on this one.
AnonymousJuly 7, 2008 at 8:32 pm
Actually I just re read your post and saw that you go back in two weeks as I was going to ask you to make an appt sooner than the 4 months. Welcome to the site too:)
I would use these two weeks to read through the posts here and gather as much information as you can. If you have a diagnosis of CIDP, there had to be something that showed up to get that diagnosis? Or is it just ruling everything else out? Even if that was the case, I would ask for a round of IVIG. If you have CIDP, you may in fact have a dramatic improvement with the IVIG. It took me many months to get to a specialist and I most likely have some permanent damage, although I haven’t TOTALLY accepted that. But with the IVIG, I have made improvements, and halted some of the progression. Today is the best I have felt in over a month. Steroids are effective for some folks, as other’s have said, but with side effects and long term compications. U of P is an excellent facility, and if you can go in there informed and with information that you have pulled from this site, they should be receptive. If not, ask if they mind if you get a second opinion, take your records and go find someone who will help you. Good luck! Gabrielle
AnonymousJuly 7, 2008 at 9:26 pm
It gets harder depending on insurance company standards and a whole lot of other things….
Here is a reference I found a while ago and I hope I post this right so I don’t violate any protocols – This is to me an important site as it includes two different standards used internationally to Diagnose CIDP. I hope I do this right and that it helps!
It is, I’ve found, a site worth exploring completely and thoroughly. There is a LOT of info packed into it. But, most important are the steps now used to diagnose CIDP.
I have to ask about the demeyelination ‘plaque’? No one has questioned this? Also, I have to ask if you ever have had traumatic brain injury at ANY time in your life…that’s how these things show up…. As long as those ‘spots’ don’t change, you should be OK in that quarter? I’ve a couple deliteful ‘spots’ that docs go WHAT? at until I tell them how I got them…then they just go OH… So, did you fall out of a tree as a kid? or get in a car accident? That kind of thing…The docs get worried about this stuff until you can explain.
Maybe you didn’t go thru back surgery for naught? But Like others, I sure would ask this doc about WHY WAIT? And ask for a clear concise reason….If it were me? I wouldn’t wait one bit. I sure hope this helps.
AnonymousJuly 7, 2008 at 10:28 pm
Hi Tim-it doesn’t make sense that you would have met appropriate criteria to have major back surgery unless you had documented back or disc problems-not cidp. You don’t go through back surgery for nothing! I will add that I agree with the others that waiting increases the chance for further demyelination. My initial ivig showed immediate improvement, but I agree with Gabrielle that I likely have some permanent damage too-my ivig wasn’t started until a year after “probable cidp”, but I had complicating issues. I also have permanent damage from 3 years of high steroids. Ivig is so very expensive but so very effective for me. Don’t wait until the damage is permanent-then you lose what might have been helped earlier on! Welcome and good luck. Emma
AnonymousJuly 8, 2008 at 8:08 am
I was told by my neurologist that the white spots can be found to occur in patients with cidp although it is not common, it does sometimes occur. I attribute this to the extreme attack I had directly following lumbar surgery.
I did take a few doses of steroids in November and December. this was just a week at a time. It caused flare ups approximately 10 days after I stopped.
this was when my face became numb. I was not diagnosed at the time.
The decision to perform microdiscectomy was made 1 full year prior to the CIDP dx. The only real problem I had was light numbness in the LH foot bottom and weak ankle. I had two small herniations, so we proceeded.
This was when the S#*% hit the fan. Two days after the surgery, I said,
something is wrong. Both my feet are really stiff. They made me wait 6 months to make sure I healed from the surgery to go further.
The sequence of events is very Nausiating. I get so disgusted to see how this has gone down.
Over the last 5 years I had alot of compaints to my PC physician about knee pain and aching knees down. He kept telling me it was arthrits, although any x rays or MRI’s I had done showed nearly perfect joints. The ongoing problems had been down played and I kept going about my busy schedule popping aleve as needed until It became a serious problem. Now, Here we are.
Thanks for all your help, guidance ideas. Please keep it coming. I am cramming data and reading posts like mad. my feel for things is becoming better!
AnonymousJuly 8, 2008 at 9:47 am
Tim, Do you have periods of normal (or new normal) between your periods of increased sensitivity? For remit/relapse type there is a sort of hill and valley effect to it–valley=normal periods or feeling better, new normal and the hills represent the increase in residuals or symptoms going up until it peaks and then declines back to your baseline/normal feeling again. With progressive type there is no return to normal/new normal feeling, the symptoms are pretty much there all the time with waxing and waining alittle but not going back to your baseline. The symptoms increase over time. Then of course there are all the other variants of cidp—too many that haven’t been studied enough to be reported in length in the med journals. Take Care.
AnonymousJuly 8, 2008 at 1:27 pm
The Dr. Neuro’s exact diagnosis is the Multifocal form of CIDP (lewis, sumner, brown, asbury) (My Dr. is Brown). Where white spots are associated with this syndrome.
As far as the hightened sensitivity. This has happened only once since my diagnosis. Afterward and up to now, I have made strength improvements, duration and recovered some sensory loss. I have had the sensitivity thing happen many, many times that dates back 20 years or so. I never knew what it was. I always called it “a chill in my leg” or head or arm or what ever.
I have been suffering many onsets for a good 20 years. I believe it is now that I have come to understand what it is that I am feeling. I wrote off past pains and problems and didn’t understand what it was. I also feel many others may have had involvement alot longer than they know and that it is not realized until there is something one can’t do til the troubleshooting the problem occurs. Best I can tell I have a relapsing remitting type. Based on a life long history of unexplained aches and pains that disappear.
July 8, 2008 at 2:01 pm
sorry no info
AnonymousJuly 8, 2008 at 4:02 pm
Making someone who has been dx’d with a CHRONIC & progressive illness wait to get treatment qualifies as medical malpractice in my book. Seriously.
You need to find a new dr ASAP. Even if this is a good neuro, he obviously doesn’t know enough about CIDP to treat it appropriately.
It’s EXTREMELY important to get treatment ASAP. The longer you go without treatment the worse the attack on your body gets. The worse the attack the more damage gets done. The more damage that gets done the harder it is to get better.
My advice is to either get a new neurologist or go back to the other one & insist that he/she starts treating you with high dose IVIG right away. Get a loading dose of 2g/kg over a 4-5 period then ask for a maintenance dose.
I cannot believe that dr’s can be so stupid sometimes! This is a highly treatable disease if the meds are given at the right time & the right amounts. I just do not understand making some wait after diagnose for treatment. And I’m just so sad that you had to go through surgery only to find out that wasn’t the problem in the first place. You’ve lost so much time already. PLEASE get to a dr & insist on treatment ASAP. DO NOT WAIT!
AnonymousJuly 8, 2008 at 4:31 pm
Thanks for all your advise and support on this great topic of concern on my health. I see this Dr. in 2 weeks. I won’t be able to schedule with my #2 Neurologist by then so I will go and let him reevaluate me and push for the treatment.
The response to my topic of no treatment has bene both informative and alarming form me. Basically from Dec 07 through Feb 08 (while suffering badly and yet undiagnosed) I Truely thought I was going to Die. I did not know what was happening to me this Dr, Dr. Brown who I believe had a good reputation by writing papers on this disease back in the 1970’s was this first to actually tell me what it was. by the time he did an EMG on all extremities himself, I went into remission which he saw on the results. So as to why he recommended against treatment for now or until my next visit, I don’t understand. I will sure ask him now. Two Weeks. Yeah! I did take the time since then for a stress reduction period of time. I seemed somewhat content and complacent due to partial and ongoing recovery instead of acting more Proactive. I just had basically a huge sigh of relief it wasn’t ALS, which was on the table. He never even brought up MS. Probably due to the sensory/peripheral and onset reasons.
Does anyone think that my partial recovery is a further reasoning that the Dr’s may argue against the IVIG treatment and prednisolone? OR Does it back Up the diagnosis and warrant immediate action?
Thank you Guys and Gals for you opinions based on your experience.
AnonymousJuly 8, 2008 at 5:23 pm
It sounds like you have relapsing/remitting CIDP. You seem to relapse & remit on your own, without medication. The dr is probably waiting to see when you relapse again to set up a treatment schedule.
That’s the ONLY reasoning I can see behind holding off any treatments. Once you feel, even slightly, that you are starting to go downhill you need to call your neuro ASAP & request treatments.
Personally, I would start with IVIG & no steroids. Then see if you need the ‘roids later. Steroids come with a whole bag of nasty side effects. I think it’s better to try without them & only add them when it’s clear that it’s necessary.
AnonymousJuly 8, 2008 at 5:34 pm
Unless you recover to 100% when you say you feel better, I think you need to get treatment. You may be one of the ones who only needs IVIG every couple of months or so. Back in May/June 2007, my then neuro thought I had GBS and said just to wait and see, it goes away. I remember asking him why don’t we try IVIG and his words were “it will fry your nerves at this point”. I will carry that to my grave for not insisting on getting treatment right then and there. If it doesn’t work, it wouldn’t have hurt me. But if it had worked, I might be able to walk now. I would ask him to trial the IVIG. Even if you had MS, since this still pops up once in a while as a diagnosis, IVIG is also used in MS, and a host of other autoimmune disorders. Try it, you’ll like it:) And then if they say no, do what we are all saying, ask for another neuro.
July 8, 2008 at 6:57 pm
sorry no info
AnonymousJuly 9, 2008 at 7:19 am
I can not thank you all enough for sharing your thoughts and recommendations with me. It was exactly what I needed to hear.
I now have a much clearer understanding of how I need to manage my
health decisions from this point forward. From my experience, it appears
most all Dr’s will tend to lean conservative unless you make the decisions
to do what is needed. I guess they don’t want the guilt of making too many
decisions for people and then the occasional negative situation occurs.
Thanks again everyone. I will digest all this from down at the Beach in Maryland for the next few days, then go to the Neuromuscular Dr. next Thursday with a clear direction.
God Bless all those afflicted with any condition (especially children), and their caregivers and family.
AnonymousJuly 9, 2008 at 5:11 pm
Tim, doctors also have to live with the guilt of not making quicker decisions and having more frequent negative things happen! GET THE IVIG NOW.
Good luck on your next appointment. I have learned from everyone here to change my words to my docs from ” I just want to feel better ” to ” I want no down time “, and a good neuro doc will understand.
Rereading all your posts, I remember one thing about you saying your liver enzymes sky high-I wanted to quick comment to that-been there, done that sort of thing-since you stopped the meds, in time your enzymes will return to normal hopefully, like mine did. Take care. Emma
AnonymousJuly 10, 2008 at 6:19 pm
I plan on asking for the treatments and so on. I also am wondering how that works with the insurance company. I guess the Dr. must maintain that its medically necessary to prevent relapse and ongoing damage. Just hopin it doesn’t turn into a fight with the insurance. Our plan is pretty good, just feeling a little unconfident that a smooth transaction is going to occur.
I’ll let you all know, thanks.
AnonymousJuly 10, 2008 at 6:52 pm
Tim, Doctors must maintain everything is medically necessary-my insurance requires prior authorization, but I have perhaps been fortunate that the ins. co. has never denied a claim. I have a copay that is pricey enough. Think positive about your plan-your physician will be able to state to your insurance carrier that the ivig is medically necessary for your cidp. Good luck to you next week. Thinking good thoughts that we all have good outcomes next week. Hope you are enjoying the beach.:) 🙂 Emma
AnonymousJuly 11, 2008 at 2:58 am
Sorry to weigh in so late, been under the weather…
Ditto what everyone has said above about “why wait”, just wanted to add that I was also told by a neurologist (I think my second?) that he didn’t want to treat me, just wanted to observe for awhile to get a handle on my disease. This guy rubbed me the wrong way from the beginning so I didn’t stick with him long – ended up at Hopkins where I got a proper diagnosis and treatment started within 2 weeks of seeing the doc for the first time.
I also wanted to reiterate that this relapsing/remitting stuff can be sneaky. While I do have an up and down pattern, it tends to drift downwards with no treatment. It’s difficult to see until some time has passed and I realize that even on a good day I can no longer do what I used to be able to do on a bad day. Once I started getting regular and frequent IVIg treatment I stopped my gradual decline and had a long period where I had visable improvement. Now I am pretty much stable – as long as I get IVIg every 21 days and don’t do anything stupid in between. We’re still tinkering with my dosage, additional meds etc. but without the support and encouragement of the folks on this forum and my nurse I would not have known or thought to be my own advocate on the timing. Assuming I don’t do anything stupid (like last weekend) my IVIg will last for about 15 days… usually on day 15 or 16 the spasms, twitching, etc. come back a little more each day until my treatment on day 21.
You have my sympathy and encouragement hacking out your treatment plan. As my IVIg nurse says “all my CIDP patients are like snowflakes, everybody is different.” I highly recommend keeping a journal/spreadsheet of your symptoms and treatment until you get a better handle on your cycle and how the various treatments are helping (or not). Without my crayon calendar it would have been difficult to argue that IVIg only lasts 15 days but after 8 months of recording symptoms it was pretty clear to the doc so I didn’t face that “wait and see” attitude with him. There are a huge number of variables in what makes you worse and what makes you better. The sicker I get the harder it is for me to keep all these things in mind so it helps to write them down. I also have a separate notebook JUST for my IVIg treatment where I note the dates, peel off and stick the lot number of the IVIg for that cycle, pre-meds, and any side effects.
Good luck, Happy Friday 🙂
AnonymousJuly 13, 2008 at 7:28 pm
Thanks for the guidance and a peek on your condition and such.
I get the twitching thing from time to time and it last for several days.
When you describe your treatment interval, Julie, you mention that depending
on behavior, your symptoms can increase. Would you mind eleborating on that? When you do something “stupid” Does that mean over do it? or some type of exposure??
Apparently you have clear focus on every thing you do and how it affects you and the conditions of the disease.
thanks for sharing,
AnonymousJuly 14, 2008 at 4:50 am
Yeah, I do have a pretty good handle on what my body is saying to me most of the time but this disease has really stretched the limits of my awareness and I can be wrong, very wrong, about how I’m doing. So here’s how I can be stupid and make myself worse:
First off the closer I get to the end of my 21 day cycle the more tired I get and the less I am able to judge my physical, mental and emotional state. Therefore I am more likely to, for example, stand outside on day 17 for 15 minutes not paying attention to the slowly increasing headache because my eyes can’t adjust to the light. Eventually the pain will drive me back inside but I am less likely to be stupid like that on day 7 than on day 17.
And I can misjudge how well I am doing too. What I was referring to in my previous post was an attempt to have a normal life last Sunday. We try to make an annual trip down to this wonderful venue to have dinner with friends and watch John Hiatt in concert every year when he comes here. Last year I was not doing as well so it was more or less a dash in, watch three songs and dash out type of thing. This year we tried to do something different – my husband and my friend’s husband went early to get good seats while we waited for the babysitter. Unfortunately the babysitter was three hours late, we got to the concert with 45 minutes left, it was much too loud for my already exhausted state, I was starving and the kichen was closed, I was thirsty and the bar was closed but there was some lukewarm beer on the table and on and on and on. It was just much more than we expected, I didn’t do well and we left 10 minutes later. What was also unexpected was how badly that little adventure affected me – I was literally passed out for 40 of the next 48 hours. I mean I could not wake up enough to even eat a bowl of soup. What was stupid was we should have stuck to last year’s plan – make a strategic strike, not plan for an entire evening because I think I can handle it, cuz obviously I couldn’t.
I can also do stupid things because my muscles are stronger than my ligaments, tendons and joints and the lack of feeling I have doesn’t tell me when I’ve hurt myself. For example, doing pool therapy feels wonderful and doesn’t feel like I’m putting any pressure or tension on my joints etc. However, anything more than 10 minutes and my ligaments, joints and sometimes tendons will get inflammed, red and swollen for a couple of days. It’s not my muscles that hurt though they get pretty shakey when I overdo it it’s the stuff that isn’t supposed to be damaged from the CIDP.
Other things that deteriorate my condition that I know of are:
too much stimulation whether it’s noise or lights or the shower;
too much variation in temperature or too many quick changes (going in and out on a hot day) I function best in a small range of temperatures;
different turf – I can walk reasonably well in and around my home because I know where all the bumps and steps are etc. but in a new environment I have to pay more attention to where my feet go and that takes more energy;
stress, tension, fear – anything that makes me tense up though I’m usually not aware of the muscle tension until I start getting spasms. This is one of the best incentives I’ve ever had for learning to let go of things that used to bug me;
alcohol and caffeine – both are fine in moderation for me but more than 8 oz of either and I’m going to pay for it in either flacid muscles from the alcohol or spasms from the coffee
repetetive motions – it’s better for me to alternate putting the glasses away where I’m reaching upwards with putting the pots and pans away where I’m reaching downwards. If I try to put all the glasses and cups away at once I’ll end up dropping one or two.
I can’t think of anything else right now but I’m sure things will come to me as I do them and I’ll post my latest act of stupidity as it comes. 😮
AnonymousJuly 16, 2008 at 7:02 pm
Thanks everybody for your help. tomorrow is my big day to be reevaluated and my treatment decisions will be made. They asked I wait since my EMG last march, so I did. Thankfully I get better by the day even without treatment. My walking is up to 1 hr per day. I swam for .5hrs today as well.
Even got my job to allow me extremely light duty, So I am off disablilty and doing light travel and paperwork/support. So Happy yet so scaired.
I am greatly concerned about relapse. I see saw’d back and forth for 9 months. I wake up every day testing and anylizing how I feel. It has consumed my consciousness. My Wife and 17 year old understand.
I am praying my visit goes well and that the correct decisions are made
by both me and my doctor.
July 16, 2008 at 10:09 pm
sorry no info
AnonymousJuly 17, 2008 at 4:44 pm
I had my 4 month follow up at Dr. Mark Browns Office at the Univ of PA in Phili
I went in there all versed on what I have learned here and pushed for immediate teatment after my physical.
The Doctor went into questioning on Family History as he did in the first two visits. This confused me. He has maintained that I not be treated as of yet,
He is not 100% sure on his diagnosis because my LP protein was normal.
He has ordered a genetic test for HNPP-Hereditary Neuropathy with tendancy for Pressure Palsey. Apparently this is one of the ailments that can be confused with CIDP. I have bilateral symtoms but one side is worse than the other. So Here we go again. I must wait 4 weeks on this test and may undergo a sural biopsy. this is a genetic condition that comes and goes causing the problems that CIDP’ers and other have. Problem with this is that there is not a treatment.
If I come back negative in 4 weeks, we will proceed with treatment for CIDP.
He feels that Once I start any of the CIDP treatment i will always require some form of treatment. so being I am currently on the mend, he feels I can wait until the results of this test are complete to start either Steroids or IVIG.
He told me it costs $250K per year for that teatment. Is it True??
Holy Cow! One treatment would more than consume my whole economy.
AnonymousJuly 17, 2008 at 5:36 pm
Oh brother, Tim! Are you just over it all now? I was just reading your post! First a couple of misconceptions in my feeble opinion. Once you start treatment for CIDP, you may very well be with treatment for the rest of your life. However, there are folks who only need a round every couple of months or, which significantly reduces cost, and it can burn itself out at some point too. I don’t think that happens too frequently though. If you need IVIG monthly, which is the time it should last more or less, the billed amount is around what you said. (so just send me a check and I’ll get some in the mail for you:)
My insurance has been great so far (after a little hiccup) and I get it weekly now, plus a thousand dollars of Cellcept a month. I need Ed McMahon to drop a check off at my house. Like other’s have said, if it is an up and down course, you may respond quite well to the IVIG and not need another dose for months.
As for the biopsy, there are many folks on here who will tell you to not get the biopsy. I didn’t have one, and I would ask him why he wants it and what if you don’t get it? Geez, I was really hoping you would have had a more positive answer today, especially since you were a sponge for information on this site. Take care, Gabrielle
AnonymousJuly 17, 2008 at 6:00 pm
I’ve been tested for HNPP – in fact that’s what I thought I had rather than CIDP due to the fact that it gets worse with compression but apparently that isn’t what I have.
Yes, IVIg is quite expensive. I don’t know how much it actually costs but the pharmacy bills my insurance company between $35-45,000 per treatment – that’s every three weeks for me. I don’t know if they actually get reimbursed that much but it would not surprise me. The reason for the high cost is multi-fold… people are paid to donate plasma (college kids are getting gas money this way) and then the plasma has to go through a process rendering it (hopefully) bacteria and virus free, etc. It takes between 10,000 and 100,000 people’s antibodies per batch… etc. I hesitate to put this in writing but I don’t actually have a co-pay because it’s considered a medical expense rather than a pharmaceutical as a nurse has to administer it. So I pay nothing after my yearly max. I understand that this is not the norm for insurance companies, my doctor brings it up EVERY visit, however we’ve been paying for the premium level of insurance since we’ve been employed and it’s now paying off. In retrospect I guess I’d rather have had no vacations than be stuck with a huge co-pay for this treatment.
If you do have HNPP then I can understand his reluctance to give you treatment as no treatment for CIDP is without side effects, risks, and expense. Have you decided whether you are going to wait for the test results or see someone else? Would your doctor be willing to try you on a trial run of prednisone to see if you improve? Four weeks of steroids should not have long term problems for you and may be enough for you to feel a difference.
I’m not sure what the biopsy will tell him – results can be inconclusive in CIDP and people don’t heal well from the surgery. In addition, if there is a genetic test for HNPP then I see no need to rush into surgery unless those results are also inconclusive. Even then, what can the nerve tell him? That you’ve had repeted damage? Don’t you know that based on EMG and NCV tests? I’d hesitate about that unless he can assure you it of it’s value in making a diagnosis.
I’m sorry today was kind of vague for you. I hate waiting for tests… try not to think about it and don’t forget to let us know what the tests say. 😀
July 17, 2008 at 7:44 pm
sorry no info
AnonymousJuly 18, 2008 at 7:14 am
Regarding this test result.
After hearing what Julie mentioned that she was tested for HNPP, perhaps this is just one of the things you must have checked if the puzzle pieces don’t fit perfectly. I don’t seem to by symptomatic of compression injury, so I’ll just have to wait on the result.
I do have group employer insurance that is very good as long as I remain employed. this is part of my frustration, struggling to work as a turbine engine technician changing aircraft engines with this disablility is extremely difficult. Especially that I do it only with a partner and travel the USA to customer locations and do it on site. A normal day is 7am to 7pm on your feet, using your hands all day long, in un airconditioned environment. 5-7 day work week. Home for a week or two then go do it again.
I currently am on lighter duty that helps tremendously but, I even struggle doing this. I am disposable at this point. Also being the bread winner is not
comforting. With my current condition, I know I am lucky but. I am probably about 50% of what I used to be. My normal self was unstoppable. I would bicycle ride 1200 miles per summer inbetween travel and house chores and home repair projects. Lift weights all winter, ride all summer. I only sat down during the winter. Now I don’t even feel like washing the car anymore. Sorry to complain, we all have these problems.
Disgusted and Frustrated. If I could just get on top of this. I do have an appt to go to Hopkins. First appt is Oct 6, 2008. People say to go or change doctors, Easyer said than don’e. These offices don’t respond well to demands.
Defineately take a freaking number. This is why I am asking for referral through a different thread. I can’t wait 3 months to see a JERK!
My fist neuro, I waited 3 months for and all he did was standard blood tests, gave me no idea what may be the problem. He told me to get a cane and come back in 3 month. Never called with the blood test results or anything.
APPALLED. I saw an asian Neruo next and she hooked me up with current neruo Dr Brown. I believe he is leader in the field. We’ll See. He spent 1.5 hours with me yesterday. But I left a little disappointed, but understand its complex. Enough Rambling. thanks, tim
AnonymousJuly 18, 2008 at 8:07 am
This is out of the Oxford Journal. By running search on
Mulifocal form of CIDP (lewis, sumner, brown, asbury).
All four of these Neuros are active. 3 of which are on this foundation
advisory board. My Neuro is Mark J. Brown who currently works with asbury
at the Hosp. of the Univ of PA. One of em is a generation older than the rest and is the mentor. the fourth is active in Rochester NY, Brown told me.
These four Gents were all part of the same office for many years. They also are all professors that teach this stuff to college students when they are not busy torturing patients. The have co written in all the big medical journals over the last 30 years.
This form is basically an asymetical version of CIDP with some features of MMN. As rare as CIDP is, I believe this is a variant of few numbers.
This is a match for me if HNPP is ruled out because I have cranial involvement, normal spinal fluid protein, asymetrical symptoms, multfocal blockages etc. See Journal article below if interested.
Lewis–Sumner syndrome (LSS) is a dysimmune peripheral nerve disorder, characterized by a predominantly distal, asymmetric weakness mostly affecting the upper limbs with sensory impairment, and by the presence of multifocal persistent conduction blocks. The nosological position of this neuropathy in relation to multifocal motor neuropathy (MMN) and chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is still debated. We report the clinical, biological and electrophysiological features, the course and the response to treatment in 23 LSS patients. The initial symptoms started in the distal part of an upper limb in 70% of patients. They were sensorimotor in 65% and purely sensory in 35% of patients. A cranial nerve involvement was observed in 26% of patients and a distal limb amyotrophy in 52%. The CSF protein level was normal in 67% of patients and mildly elevated in the remainder. None had serum anti-GM1 antibodies. There were multiple motor conduction blocks (average of 2.87/patient), predominantly located in the forearm, whereas demyelinating features outside the blocked nerves were rare. Abnormal distal sensory potentials were found in 87% of patients. The electrophysiological pattern suggests a very focal motor fibre demyelination sparing the nerve endings, whereas sensory fibre involvement was widespread. The course was chronic progressive in 71% of patients and relapsing–remitting in the others. During the follow-up study (median duration of 4 years), half of the patients progressed with a multifocal pattern and the distribution of the motor deficit remained similar to the initial presentation. The other patients showed a progression to the other limbs, suggesting a more diffuse process. Fifty-four percent of the patients treated with intravenous immunoglobulin showed an improvement, compared with 33% of the patients treated with oral steroids. Overall, 73% of patients had a positive response to immune-mediated therapy. LSS may be distinguished from MMN by the presence of sensory involvement, the absence of serum anti-GM1 antibodies and, in some cases, a positive response to steroids. In some of the patients in our study, LSS evolved into a more diffuse neuropathy sharing similarities with CIDP. Others had a clinical course characterized by a striking multifocal neuropathy, which suggests underlying mechanisms different from CIDP. Overall, whatever the clinical course, LSS responded to immune-mediated treatment in a manner similar to CIDP.
Key Words: Lewis–Sumner syndrome; multifocal acquired demyelinating sensory and motor neuropathy; multifocal motor neuropathy; chronic inflammatory demyelinating polyradiculoneuropathy
AnonymousJuly 18, 2008 at 11:22 am
We just got back from the Mayo Clinic and my daughter is kind of going through the same thing as you. But, she has been on IVIG for 2 years and she gets 22 grams every week. She has also been on Cellcept 2000 mg per day for one year. The confusing part of our visit to Mayo was that her left side had a very small improvement, but her right side arm stayed the same, but the lower leg had a change for the worse. When the peripheral nerve specialist, Dr. James Dyck, whose father named CIDP, examined her he says she looks just like someone with CMT, but then once she went on IVIG she stablized. Also, since she has been on treatment, her protein levels went down. She is one of the more difficult ones to diagnose. So, now they want to do a nerve biopsy to see if there is, in fact, inflammation. They say that they can determine if it is CMT or CIDP by looking at the nerve. But, they say that the biospy of the nerve should only be done at the Mayo Clinic, because they and one other place are the only ones that are experts in conducting the biopsy. Our doctor at home was in total agreement. He said he will not do the biopsy if it can’t be done at Mayo. After two years of treatment, we really need to know if it is CIDP or not, because of costs and because of risks. She had all the tests for CMT two years ago and they came back negative, but there are so many types that cannot be tested for. Her symptoms are also staying mainly in her hands and lower legs. We are now waiting on a neurologist to review her records and tell us if he will do the surgery. What we are trying to do is have the surgery done at home and then have the nerve shipped to Mayo for the biospy. These diseases are so confusing and we would just like to know what we are dealing with. If she does have CMT, I want her off the medications ASAP. We only have a $2 million dollar cap on our insurance and that can be used up real fast. Our insurance has paid very well for her IVIG and Cellcept. The cost per month for both is around $19,500.
AnonymousJuly 18, 2008 at 6:48 pm
Sorry to hear you daughter is suffering with something like this. I havn’t spent too much time researching the CMT. I guess the genetic neuropathies
are in a world of their own. The Immune system can be tweaked and even shut down if needed but when genetic deletions and variations occur that is even worse. I am with you though, if she has CMT she needs off the immune system drug. Odd though that her protein was up. It is tough to be told you have one of these odd medical condition and you come to terms with that, then after some treatment, they think its something else. I guess that is also part of the diagnosis. Hope things work out asap for you and your daughter.
AnonymousJuly 18, 2008 at 8:11 pm
Tim, I saw my Hopkins neuro today (more on that tomorrow when I’m not so tired) and mentioned you could not get an appt. until October. He said “have him call me, there is no reason he can’t be seen earlier.” Send me a private message if you want his phone number. I understand if you want to wait on your HNPP test results but the option to be seen at Hopkins earlier than Oct. is available to you.
AnonymousJuly 18, 2008 at 11:23 pm
Tim, I am truly amazed at you, since you have given us a job description! Wow! I would recommend that you PM Julie and make sure you have the same neuro at John Hopkins that your appt is scheduled for. As to the ivig expense-Dawn enlightened me also on the actual Baxter price-I know the markup is eye popping, to say the least-my monthly bill at the hospital for the ivig and outpt infusion charges run about $ 28000.00, and that is 45gm daily X 4 days. Haven’t seen home ivig bill yet. Not sure what my lifetime expense is, but thanks to Dawn, I am for sure checking. From working in the hospital, I know there is a lifetime of days you can be in the hospital too(insurance paying wise). All of this is not intended to alarm you as much as probably prepare you for what may be coming up for you. My best wishes and I really hope you get the needed answers soon so you can start the treatment. We have all said REST, but wow you really having a challenge with the travel and work issues and bread winner responsibilities-maybe you can’t bike right now, but find something you like to do that helps you relax your mind AND your body. Keep in touch…..Emma
AnonymousJuly 19, 2008 at 2:24 am
Don’t do the sural biopsy if you don’t have to..I had it done before I was diagnosed and wish I never did. That area on my left ankle pulses with pain especially at night when I am tring to sleep and after I have been very active. The only thing I found that helps is if I put an icepack on the area.
AnonymousJuly 19, 2008 at 8:12 am
I hear ya’s,
I am defineately going to follow up with Julie’s Doc. to reaffirm my diagnosis and lack of treatment plan. A perfect schedule would be just after the result of HNPP. I truely believe that this is more inflammatory. based on a huge flare up after lumbar surgery and the fact that a previous eppidural caused foot drop. My feeling is some of the assymetical symptoms is due to hernaitions
in my neck and back cause worse symptoms on those nerve lines that the opposite sides. I have 4 neck herniations from C-3 through C-6. that explains uneven hand problems, and the L4 L5 double microdiscectomy for LH herniation explains my LH calf weaker than rt. it hasn’t totally healed yet.
My Primary care Dr. does exrpess importance of rest and don’t worrry about things. I replaced the bike with a camera for hobby sake. don’t even try to over exercise. I stopped all projects at home or even idea’s I had. Its survival mode. He indicated that I have enough problems to go onto medicare but if I feel better by keeping mentally active with my employment, that may help keep me from depression and such.
The employer has been more than good to me. I don’t have to do anything really strenuous anymore. When I do travel currently it is for like to train new people and mentor them, go to trade shows, and minor support things and projects. I just have to get there, that is the difficult part. I schedule my layovers for greater than 1.5 hrs so I have time to walk to the next gate.
I could have a desk job, but I work from my home. I would have to move to
Knoxville, TN. Not just yet. It is possible though.
My Supervisor has a blind and autistic son. He is very understanding. The US plant manager passed away from Brain Cancer, and the HR director’s daughter commited suicide because of the mothers illness. then she just passed away. So, Trajedy has struck people I work with and they are very understanding. We also have a canadian tech with MS. he is still active as well.
AnonymousJuly 19, 2008 at 1:21 pm
Tim-it sure sounds like you have an understanding employer and a great team to work with. I added the porter to my flying layover plan-I applaud your determination, but it does help conserve your energy so you can perform better. Just a thought— Just going to add one thing about what your gp said about medicare-even being on medicare, you are still allowed to earn some( I believe it is around 940 a month now), but you have most importantly a guaranteed monthly income and health insurance that covers medication and treatment expenses for you. A good deal of my depression stemmed from the stress of the mounting medical bills and dealing with my cidp;once I had money coming in monthly and health and prescription insurance, most of my depression was relieved. Sure I have issues now and then, but you find something to do or have wonderful family time or call a friend or grab that camera and capture some special moment on film. Lots of issues for you to deal with, but it sounds like you have a good handle on things and working toward getting these issues resolved. Looking forward to what the JH neuro says. Take care.
AnonymousAugust 3, 2008 at 9:40 am
I had my mother admitted to the hospital last monday because she was ill.
During one of my visits she was given a Neurological exam. The Doctor was very nice and a good communicator. When he was finished, I told him of myself, with CIDP and was not treated yet. I also asked him for a referral for the CIDP specialist in his group, He was one. He gave me 15 minutes of his time.
Basically what he has conveyed to me was that most of the treatments they have for this condition work at some level and that they usually lose effectiveness over time. Their goal as the doctor is to keep the patient functional. He actually told me he could probably make me dance, but that the longevity of that is limited and eventually the body builds resistance to the particular treatment.
I was a bit discouraged to say the least. The “keep the patient functional” part was disturbing. My feel for what he was telling me was too aggressive of a treatment if not deemed absolutely necessary could have negative overall outcome down the road. Basically “save your aces”
Now I am more confused and disgusted! Every opinion I get is either different or askew and left open for interpretation. Yeah well, I can only hang on so long to work with an unknown fate of when the next attack will occur. Going through life knowing you can be knocked down at any second is working on my head. See you all Tim
AnonymousAugust 3, 2008 at 1:30 pm
Tim-I guess the hardest thing for me to have had to accept is the unknown of when I might progress worse or be wheel chair bound, and you know what? For awhile I was asking several neuro’s their opinion and guess what? All were different. Ask 5 people how to wash a car? You get 5 different answers. I was impatient; I wanted all the answers; I wanted my control back; I wanted to plan things out. And it just doesn’t happen to work out to what I want; frustrating? You bet it is. You must just take care of today. Sure there are a lot of things you need to figure out, but that will come. Just take care of today. One question about the tomorrows though-do you have an appt with Julie’s doc at JH earlier than Oct?
Hope your mom is doing better Tim.
AnonymousAugust 3, 2008 at 5:18 pm
I was too seen at the University of PA Hospital and my Neurologist back then was Dr. Mark Brown. At that time he was a Professor of Neurology and had some age to him then. He was a good doctor! I strongly urge you to stay with him.
Back then I was suffering from nerve damage and had two white matter lessions on my brain. Motor/sensory nerve damage, Livido Reticularis, Fevers, Joint Pain and Photosensitive Rash. I had been to doctors back then 5 years of suffering.
Mark Brown studied me and found me to have Systemic Lupus with Neuropathy. Now I have Systemic Lupus and CIDP! The Lupus caused a Cerebral Infarct and gave me a Left Hemisphere Defect. When he saw me having problems, then I was placed in the hospital and given pulse steroids.
Stick with him! I live in NC now and wished I had him back as my doctor. I would have been diagnosed by now if I would not have moved. These NC doctors down in my area unless I travel are not worth a flip. I had to doctor shop a while until I finally got somebody to listen to me.
Believe me! He is watching your pattern and then going to decide your fate! You might not agree with him right now, but I can tell you that the man knows what he is doing and is a good doctor. He will get you straightened out if he can.
My husband back then had a client that had CIDP back then and he told my husband about him. So I was referred by a pateint of his. Stay with him! That is all I have to say! He know’s what is going on with you now and wants to see your pattern. Once he sees that, then the treatment will begin!
I really miss Mark Brown! He is a caring doctor! Very caring!
AnonymousAugust 3, 2008 at 5:38 pm
Tim, I realize I’m somewhat late to the party, but your symptoms/problems are similar to mine, so I thought it might be helpful for me to relate my experiences.
I was diagnosed by an Orthopedic Surgeon as having spinal stenosis and foramenosis at the L3, L4, L5, and S1 levels, and by a Neurologist as having CIDP. Fortunately for me, these two guys were actually willing to talk with each other and they agreed that I should fix my spine problems first, because of the constant severe pain in my lower buttocks and hamstrings. They also agreed that both CIDP and spinal stenosis can be the cause of foot drop and neuropathy and that any symptoms remaining after the spinal surgery would probably be due to CIDP.
The spinal surgery was performed at The Bonati Institute ([url]www.bonati.com[/url]) in Hudson, Florida. The surgeries (4) completely resolved the pain and were responsible for a minor improvement in the foot drop on my right side. The Bonati procedures are done while you’re awake, viewing the surgery on a CRT monitor (Have you ever seen your spinal cord in real time?), and each incision is about 1/4 inch in length. Because the tube through which the instruments are inserted pushes the muscle fibers aside, there’s very little pain at the incision site. The only pain meds I took for each procedure were one or two Darvocet tablets. I was up and walking 30 minutes after each surgical procedure (laminotomy and foramenotomy at each level) and each time I was back at the hotel about an hour after rolling off the operating table.
My reason for mentioning this is that Dr. Bonati told me that approximately 70% of the surgeries they perform are to fix failed open back surgeries. I’m not an Orthopedic Surgeon, but it does seem to me that symptoms which have worsened after spinal surgery would probably be due to the surgery’s being unsuccessful.
One of the things that impressed me about the Bonati Institute is that they have both Orthopedic Surgeons and Neurological Surgeons on staff. They also have a complete neurological department that does nerve conduction studies because they believe that spinal surgery necessitates the involvement of both specialties.
In my case, now that my spinal issues have been resolved, my neurologist is confident that the remaining problems are due to CIDP and he can now concentrate on those.
I hope this will be of some help to you.
AnonymousAugust 4, 2008 at 3:50 am
I too was diagnosed with Lumbar Spinal Stenosis and had surgery this past May! Did great for two weeks right after that surgery and then I had a massive attack on my nervous system. 3 lower disk got messed up from a car accident. I was in so much pain for 2 years with that. The surgery helped with that issue but when the attack occured I ended up in bad shape. I ws having feeling in my one toe and it felt like my nerves were coming back to life. Now both legs from my toes up to my knees have no feeling in them at all. Dead feeling legs. My arms got hot and tingly and are now dead feeling with pain in them. Had my face do weird mess. If they ever have to do spine sugery on me again, I will say NO!
AnonymousAugust 4, 2008 at 8:01 am
I am pleased to finally hear the only feedback I have heard so far on Dr Brown. He does appears very knowledgeable and commited to getting to the bottom of things. I do believe he is watching and waiting for my benefit. So far he has not done anything to make me want to leave his care. When listening to all the different accounts of those, it is so true that nobody even comes close to similarity with symptoms. There is no doubt that lumbar surgery affects your legs by trauma to the nerves during the procedure. I believe that in conjunction with the CIDP just make the problems more pronounced. We can’t blame all I have wrong on the possibilty of a failed back surgery as some may think. I had double microdiscectomy on the LH side. Had previous eppidural that caused double foot drop. Inflammation, in legs EH, severe facial and both arms numb, Demyl. plaque on brain and dead sural nerves with demyl in both legs. Once I get result of HNPP, I’l have clarity on my treatment options. Thanks Linda!!
AnonymousAugust 4, 2008 at 8:45 am
Hi Tim! Well lets just say you actually two good words on Dr. Brown! One of his patients referred me and they told me good things about him. Funny because while I was getting sicker in PA with Lupus back then, I had seen 4 different Neurologist, and over 5 different regular doctors, along with several hospital stays. Nobody could give me any answers back then. Or would not tell me anything.
The patients name was Mr. Cherry. He was an older man and started getting bad neuropathy problems. Got to the point he landed in a wheelchair. Was seeing doctors and no answers. He was a rare case to diagnose. Mark Brown saw him and started testing and knew what to look for and found it. Mr. Cherry has a benign tumor after a Bone scan on a bone, can’t remember where it was but he had to get Plasmaphersis treatment with prednisone. It took a whole year of recovery and he could not drive anymore. Was extremely ill. One year later, he was driving again and walking with a cane.
They know I have CIDP but are trying to rule out the Heriditary Neuropathy also.
Some neuropathies and there are hundreds can’t be treated because of a genetic factor, but they can at least give you something to ease the crunch. I was a rare breed and have been from day one. I have Systemic Lupus but don’t give off the classical labs like many other’s do. A Rare form of CIDP can happen and they think that is my case. But because of two doctor’s here in NC messing me up. They now have to rule things out first.
I miss Mark Brown. The man sure know’s his stuff. I would have never gotten diagnosed and probably died back then. That man saved my life! When he did find out what was wrong with me, they started treatment. But I was in really bad shape when he first saw me. I too had landed in the wheel chair and was bedridden most of the time. When they started the pulse steroids on me! Woo hoo! I remember jumping up in the hospital bed and telling my family, I feel better already! 😀
Get to NC and see one fruitloop and have normal labs. So he wants to take me off prednisone and say I no longer have Lupus. Just got a new biopsy report in July reading Lupus. Told that doctor too that I was a rare breed and my labs would come out normal over half the time. Instead of listening to me, he ignored me. Now I have that rare form of CIDP again like I did before. Thank goodness I have some doctors finally listening. But hate that I have to be tested all over again being ruled out for some things I have already been ruled out on years ago!
Have a great day and it is a pleasure meeting you.
AnonymousAugust 13, 2008 at 3:17 pm
I Finally received the result of the HNPP genetic test.
The last written report From Dr. Brown was that “if that comes back negative then CIDP is the diagnosis”.
Well, after waiting 29 days, Negative, Bitter sweet I guess.
Glad I don’t have to worry about my daughter having HNPP.
Now with a Firm Diagnosis, there should be any horsing around when I require
the proper treatment. Thank the Lord. I hope no other complications arise.
You know, this does mean that I am an official lifetime member who has lots of friends to share each others ups and downs with.
Thanks for all the support with this Thread. I see the doc again in November
unless a decline occurs first. Keeping em crossed for now.
AnonymousAugust 14, 2008 at 1:24 am
I was not so lucky-went through several primary care/specialists docs who blew me off with “It’s Fibromyalgia or Chronic Fatigue or Pain Syndrome” for too many years. The pain was over “10” and getting worse. I was told by two of my city’s top neurosurgeons I needed TWO back surgeries. I went to a recommended neurologist to see if he thought surgery was the answer and also to check about my Fibromyalgia condition. To my surprise he said lady it’s not your back-I’ve reviewed all your MRI’s and medical records. It’s something else and it’s very advanced.
It was CIDP and after it was confirmed by testing the neuro started me on IVIG immediately.I still have both my forearm crutches in the car trunk with my canes. My walker is in the closet. Back surgery was the wrong diagnosis. Yes, I do have Spinal Stenosis but not like they thought.They saw a lady in pain who couldn’t walk-surgeons do surgery. The dragging my feet was due totally to CIDP.
Glad you have your diagnosis-now for the proper treatment and getting better.
AnonymousAugust 14, 2008 at 3:35 am
Well that is finally some good news for you and now the treatments can begin soon. Just hate to hear of any of us being sick though. And wished we all were well. Now hopefully they can get me figured out and start my treatment soon. As of yesterday, the MDA Clinic got my referral faxed over and is in the process for review and then they will tell me which doctor I see and when I see him! Just hope it’s not Christmas time! LOL! Hope things go well for you now.
AnonymousAugust 14, 2008 at 10:51 pm
The plan is do nothing just yet. LindaH and I were chatting, she had him for years and knows his M. O. His Secretary said he’ll see me at my normal scheduled appt. in November. So no treatment as of yet. He knows I have been building strength, so as long as I don’t flare, I am OK with that.
Linda is figuring he is just watching for a pattern or to see if any changes occur or not. IF I relapse, I am confident he will act. Still don’t have a cause. I don’t think anything will just pop or present itself so we may just attribute it to the surgery making my system go haywire. Thanks for the interest Emma.
AnonymousAugust 15, 2008 at 6:22 am
Tim, very happy to hear you don’t have HNPP – no cure or treatment for that so if you have to be stuck with something odd to plague your life at least it’s something that does have a treatment. Keep an eye on things and don’t let yourself go downhill too much – if you start sliding call them up and ask to be seen earlier. I’m not going to make it to Hopkins today so I can’t ask about the HNPP but next month I will (good thing I didn’t cancel Sept. appt!)
Have a good weekend ya’ll,
AnonymousAugust 15, 2008 at 7:07 am
I can’t believe Dr. Brown is still there at the University of PA Hospital. He’s sure has been there a very long time. I really miss that man. After seeing all those other doctors I saw I was really untrusting of them after my experiences. But then I met him and found a caring doctor. He’s a little quiet at first but very professional.
Ohh Tim! I forgot about of friend of me and my husband’s in PA. Her name was Mary! She too had Mark Brown. She got into a very nasty car accident and stayed in the hospital for months with a brain injury.
When she recovered, she kept hearing a swooshing noise and nobody could figure out what was causing the noise.
Mark Brown ended up seeing her and the man found a busted blood vessel in her brain. They had to do two brain surgeries that had never been performed before. Mary was actually dying and the only chance she had was that surgery. I totally forgot about her! The surgery was a success.
We used to call Mary a woman with 9 lives. Two brain surgeries and ended up in another car accident that threw her 20 feet away from her car. She ended up having a 3rd brain surgery and survived that one. All 3 injuries were pretty nasty. And she has no brain damage at all! Very lucky lady! Very lucky!
Hope your day today is a nice and cheerful one!
AnonymousAugust 21, 2008 at 10:38 pm
Hi my husband has had a terrible year.He was so active but the day befor fathers day in addition to his drop foot,muscle weakness,some cognative problems,he had a seizure.From June 14 on he has gone down hill soooo fast.I went out of our health network and went to JohnsHopkins.He had a EMG.blood work and a consult with a very good neurologist,They reviewed his case the following wednesday and decided to admit him ASAP.But my insurance denied me.I had to pay over 5000.00 for that one visit.I am now on a waiting list to see Dr.Shawn Bird out of U Penn.He is in our local hospital tonight because he had blood clots in both legs.I am going crazy with the unknown!! I read a lot about CIDP but the seizures don’t seem to fit.He just had another MrI of the brain and spine but both are negative.He was working 5 months ago with a limp.Now he is in a wheelchair.I feel like he is going to die.Is this disease fatal.I feel his is so progressive.Is U Penn a good place for treatment or should I get a home equity loan for Hopkins??
AnonymousAugust 22, 2008 at 4:48 am
I feel so deeply sorry for your husband right now! Dr. Shawn Bird used to work with Dr. Mark Brown when I was being seen there and I actually saw both of them. Dr. Bird is an excellent doctor. In fact, I think University of PA Hospital is an excellent hospital. Expecially in Neurology. I was very sick when I first got there and Dr. Brown had a team of Neuro’s working on me. They sure helped me out. So sorry to hear about your insurance company not covering the charges. That is such a shame for John Hopkins is also a great hospital.
Medical bills like that can take a person’s home away and make them loose everything they have. And it should not be this way. Some unknown virus’s can also cause CIDP. Exsposure to a toxin can cause CIDP.
What other kinds of symtoms has he had? A rare form of vasculitis can cause CIDP and seizures. CIDP rarely causes death, but that depends on what is causing the CIDP. Some forms of CIDP depending on the disease that caused it can be deadly. And also what has he been exposed to? Certain rare neuromuscular disorders too can cause CIDP.
I wished I could help you in making that decision about where to take him and the financial aspect. A persons life to me is priceless. But in the world we live in today medically speaking. There is just no value on life anymore. It’s all about money. But then you have to realize what is best for you financially. I know you love your husband deeply. I can tell that in your posting. And it’s very hard not being able to help him.
The worst part about this situation is two people are involved here. You and your husband. You may have to sit down and think about what will happen to you if you decide to take out a loan. And what if he does pass away? Will it hurt you financially and will you be able to handle that afterwards. But at the same time, you want to do what is best for your husband. The financial aspects of this could be devastating for both you and your husband. These insurance companies really upset me at times.
If I were in your shoes. I would see about getting another neurologist at the University of PA Hospital and see if the insurance company will take them. Have him transfered and let the insurance handle the bills.
$5000 here and $5000 there can wipe you out overnight. I truely feel for you and you really need the hugs right now.Not easy dealing with either. Very stressful situation and the unknown is very scary for you right now. You certainly have your hands full right now. I hope that my advice helps you some and please keep us posted on his condition.
I really can not tell you what to do here but can say special prayers for him. I do hope they find out what is causing his illness and make him well soon.
Giving you a huge cyber hug and alot of prayers
AnonymousAugust 22, 2008 at 6:39 am
Hi Shrimpbox 73,
I am very sorry to hear how things are going for your family right now. When trying to get into these appt. is rough. From what I have learned, the University Hospitals are what you need to look into with more weight. HUP in PHL is awesome. You can recieve quality care in Phili. They have some of the best in the country there. You can go to JH too, alot of members swear by their doctors there. When it comes to being admitted, that when it gets pricy. Paying out of pocket just for the neuro visits aren’t bad, so go with your gut. If your husband required to be admitted to a hospital, you can probably have the neuro group arranged that at any hospital, and he will be seen by the neuro there and will tap into theirs pool in specialists.
My first appt. was scheduled 3 months out and I was in desparation. they phoned, had a cancellation and got me in on a 3 week appt.
The way it works is, each Neurologist usually has his or her own secretary.
There are probably 5-6 neuro’s at HUP. Try getting ahold of each doctors secretary and get on their short notice will come list. OR see if Dr. Birds secretary will check with or get your husbands name on all of their cancellation lists. Many people schedule multiple appointments so slots do free up. Call and check back frequently, try spend as much time talking to the receptionist and secretaries to establish a connection. Try to pick a hospital that accepts your insurance so you don’t have to worry about that too. If that is not an issue, get the quickest appt. available. Set appointments at say two major hospitals that you accept. I don’t know where you are located but up here in NE Hershey is good, HUP, and you already tried JH.
Keep in mind, getting a visit scheduled for a problem you have is one thing. but, It sounds like things are moving pretty quick so you always have the ER option to be used at your discretion. Good luck!
AnonymousAugust 25, 2008 at 12:45 pm
I say get a new Dr and start IVIG. start slow and low. pre medication is always good and drink lots of water before,during and after treatment. If you can have them come to your house and get your treatments. Keep a log of everyhting, every test and every symptom new and old so you can report all this to your Dr.
I learned all this and more information from my lovely friends here on this forum.
AnonymousOctober 27, 2008 at 9:13 am
Updating My thread, Hi Folks!!
I have seen my Neurologist for the 5th time Since March 08. He has developed a handle on my particular situation just like You said Linda.
The EMG Last Friday showed very similar to the previous one 6 months earlier.
Brown is firm on Multifocal CIDP rather than MMN due to the serious pain I have been living with for several years.
Apparently my strength gains are being attributed to a short lived remission but more of a control of Pain. As I had finally found pain meds that worked for me, My mobility has become much better. I have minor increase in sensory loss at a blockage below the RH knee. Being I have perfect health vital signs, normal BMI and no other issues, we are going to go with a 3 month trial of Prednisone and see how that works First. Starting at 60mg,50,40,30 then 20 for intervals of 3 weeks. I am excited to see how this goes but scaired because Once we get started, this can rock the stability I have had and open up Pandora’s Box. Here we go. Tim 😮
AnonymousOctober 27, 2008 at 10:03 am
Hi Tim! Well that is wonderful news that he has figured out which kind of neuropathy you have and starting the Prednisone meds! Tim! Let him do the treatments on you with the Prednisone. At least he knows what kind of nerve damage you have now and will be able to try different things if the Prednisone doesn’t work.
That prednisone many years ago worked for me and I think you are going to see yourself feeling much better! He’s a good doctor and studies you well even when you don’t think he is watching! LOL! I loved him deeply! Sure miss that doctor too!
I think your going to see alot of improvements. You may have to stay on prednisone off and on at different times to keep the inflammation of the nerves down. He’s going to try taking away the inflammation down first and see how you handle this treatment plan and then will lower your dosages and see how well you do.
It really depends on the patient! Some need short term treatment while others need long term. And some will need spell of taking prednisone just to keep the nerve damage from flaring up again.
He will be watching you and testing every now and then to see if the treatment is working or not! But stay with him! He’s good! Glad to hear you finally got some answers!
Get well my friend! Get well! Hugs
AnonymousOctober 30, 2008 at 3:53 pm
I didn’t disappear or forget about the everyone here on the forum, I was just extremely busy with you name it. Between my mom in and out of the hospital with a B cell lymphoma, Chemo etc and going there daily, supporting my Sis who is needing a kidney transplant and the neighbor girl across the street who grew up with my daughter Kelly got killed in her car two weeks ago.
Trying to find a college for Kelly for Fall 2009, throw in a few birthdays etc.
Don’t forget work and traveling 15 of the last 30 days. I don’t know which end is up. then I get home from Dayton today and have to go across town for random drug test. can you believe it. I plan on taking it easy for a few days and resting Until next Thursday.
Also I look forward to meeting anyone who is attending the Symposium.
We are flying in Thursday morning and out Sunday morning.
Who is coming from Pennsylvania??????????
I am taking the Ultam 300mg ER and 1800mg Gab and it works Very well.
I don’t plan on the steroids until after the Symposium.
Have a Great Day, See Ya! tim
AnonymousOctober 30, 2008 at 10:32 pm
Hope your mom is doing better, as well as your sister. Give Kelly a hug for us, it is very difficult losing a friend at this age. Try to rest and get ready for Thursday. I am so excited I can hardly stand it. Can;t wait to meet you guys and everyone else.
Take care and God Bless
AnonymousNovember 18, 2008 at 7:30 pm
Hi Guy’s and Gal’s
I started with the 60mg of Steroids on my travel day back from the symposium. I waited two weeks to start from the time I had the go ahead from the Dr. He suggested waiting until the two trips I had scheduled were over. I was dying to get moving on this because I felt things were getting worse and my lower back was aching more and more, feet floppin and my fingers feeling a little number than usual.
So like the first day after I took the steroid, I could feel its affect on the inflammation in my legs like a cool rush, but in the evening my thighs felt warm and more inflammed. this went on for 3 or 4 days tapering off. Now, I don’t feel the affect of the med after taking it, but I don’t have the warming either. I am going to attribute this to the drug holding down the inflammation so far. Evening leg ache seems to be reduced. still on Ultaram 300 and Gab 900mg up to 1800 if needed.
I have been pricking my finger with one of them Breeze II Blood sugar testers and that seems OK. 2 hrs after I eat it gets up to about 160 but in the morning I get like somewhere between 82-92.
I am trying to be vigilant on changes for the better with the CIDP and also negative side affects from the Steroids. They may occur more so in the longer term. Its a bummer that winter is here, I can’t really guage my walking rate like when it was warm. It is too cold to go out or I am getting lazy or both.
The Doctor told me that steroids affect sleep. So far, I can still crash out in like 5 minutes and still take a nap in the afternoon. My appetite seems the same also, I was told I was gonna want to eat everything.
At the end of the day, I somehow need to tell the Dr next week either, Its helping, same or not helping. I would imaging I would need to gain some strength to indicate that it helping. Of course, the anti inflammatory part of the drug is working but. Does that constitute getting bettter? I don’t feel so because just about anything I take makes it feel better. I would expect strength, stamina and fatigue improvement.
Anyones anlge on what to expect from steroids with CIDP is appreciated.
How long did it take for you to gain some strength? weeks? months? could you feel its affects just hours after taking it? I have alot of pain so when I take the drugs, I can feel it right away. When I was real bad back in Feb, Just putting ibuprophen creme on my back and I could feel it in my legs. Enough!
AnonymousNovember 18, 2008 at 9:28 pm
When I went to the doctors this last week I turned my cell phone off and didn’t realize it was turned off until today. Am just now getting your message! LOL! I’m sorry! It’s been a very crazy hectic week. And Linda here is getting doofy brained.
That prednisone with you just starting out on it. Really hasn’t been in your system that long. It takes a while before you start getting hunger binges! The side effects vary from person to person. Some get hunger binges.. ME 😀
While others get nervous and moody. And then some folks do very well on it and don’t see much going on! Usually after about a month of being on the drug is when you will start seeing things happen like the moon face and weight gain. Don’t over push yourself with alot of exercise. You don’t want to have a relaspe and need this medication to get in your system.
Tim! It’s going to be hard to tell you that it won’t be long before you get better. You may be seeing some results but it’s not going to cure you. Only helping you in hopes to go into remission! I started on Prednisone in 1993. And I at that time was wheel chair bound and almost bedridden. It took me two years to get out of that wheel chair and start walking on my own again. I have seen off the pred and back on it. Off the pred and back on it again.
I saw 1 remission that lasted almost 4 years. Then I got sick again and no back on the drug. Depending on the damage and inflammation you have. It could take a few months or a few years. You will be able to tell in about a month if the drug is starting to help. But it depends on each person. Some are slow healers while others get well quickly.
You will probably end up seeing those doses of prednisone off and on for quite some time. And you may still have flares every now and then having to increase the dosage again. But you on a start and time will tell! You got to think here that you have gone 5 years of damage before finally getting a diagnoses. And those 5 years did some damage on the nerves. Nerves have to regenerate in order to heal back. The main thing is keeping this inflammation down and getting those nerves that got damaged to regenerate and come back to life. Each day you may see a difference and as long as you see improvements, then that is good. If you start feeling bad again you let Dr. Brown know ASAP! I call CIDP.. a form of MS. For it can mimic MS at times. The prednisone might help you out and you get well again and never have any more problems but then too, you may still see a few flares having to increase the doses. The one best doctor we have is our own bodies. Listen to your body and keep listening. Any changes that feel abnormal let the doctor know.
I know a man that too saw Dr. Brown and he was wheel chair bound like me. They placed him on treatment and a year later he was walking with a cane and down to 1 mgs of prednisone per day. He did great! Me! Because of the disease I have which tacked on more diseases.. 😀 I will see Prednisone the rest of my life! I have been on high doses tapering down to low doses back to high again. I will never see me getting off the drug. They might lower it but that is far as they will be able to go with me. So each patient is going to vary!
Sounds like right now, you are doing okay with it. Still watch your blood pressure everyday and sugar. Good luck my friend! So glad you are now getting treatment and I hope it makes you all well again! Hugs
November 18, 2008 at 10:05 pm
sorry no info
AnonymousNovember 19, 2008 at 6:58 am
Hi Linda and Dawn,
Linda, thanks for sharing and giving me some idea as what to expect. I certainly show signs of impatience. It is all new to me so I don’t know what the heck to expect. I try to be optimistic hoping to see improvement but I have done that before only to be let down. I want to say things are helping but pain reduction alone isn’t alway improvement.
Since taking the steroids my back ache seems to have tapered off. At the symposium it was becoming unbearable, I couldn’t sit still, rutching around only finding relief with ice and legs up on pillows, weight totally off my legs. That seems to have subsided slowly the last ten days and is almost gone or not noticeable by the time I am down for the night. Thats positive because it totally distracted my mind.
As far as the fingers, My outer two finger RH are the real bad ones, the palm of my hand out to the tips, I sometimes can’t type right. this is due to the Ulnar conduction block at my elbow. The thumb, index and middle of both hands are reduced in sensitivity and more bothersome with reduced sense of touch, and feel partially numb.
Basically when I put my palm down on the table and tap my fingers like in the impatient way, they hurt, taking the meds makes things feel different but I can’t tell if it is better or worse. Driving me nuts. The only definitive for sure thing would be if all the pain, numb feeling and touch returns to normal.
I developed new numbness in my RH heal that prompted me calling in back before the symposium and we did EMG #4 that showed chronic active blockages at area previously tested indolent. C/V slowed at the blockages, the nerves below the blockage seemed good. I have Blockages in both peroneals at the fibrular head, the RH hamstring area above popliteal fossa and RH elbow.
So for now the back feels better, the hands feet and fingers are the same.
I can’t toe walk LH but can RH. and can do ten toe raised both feed combined.
Dawn, I can’t even image how you do with that boy of yours, I can’t even tell what is going on with me never mind you trying to figure out what your son Kevin is feeling and how to interpret that. You must have to watch like hawk for everything and then segregate what he tells you when he tells you.
My 18 daughter is having a bout with abdominal cramps and pain, and we are having a heck of a time understanding what she feels and is going through so we can act properly at the specialist. So you moms and dads of these kids must really have keen perception of things.
AnonymousNovember 19, 2008 at 8:05 am
I’m glad you are feeling a bit better. I took steroids for a very short time. I was doing 90 mg every other day. Nine little pills of evil, I called them.
At first I did ok. I had more energy and my mood was up. I never had any improvement with strength in my legs or feet. I was about three weeks in and one night while making dinner, my son (was four at the time) was clinking his silverwear on the table. Nothing a normal mom couldnt handle. Well…the noise set me over the edge. I couldnt stand it. I yelled at him and scared him about out of his pants. I knew then, no more roids for me. I was beginning to be very impatient and angry about every little thing. It seems that noise is what bothered me the most tho…whether it was a spoon hitting the table or traffic or a tv too loud. I am typically very patient…especially with my son.
I called it roid rage.
I tapered down after four weeks b/c I couldnt handle the emotional rollercoaster. My mom was very sick at the time and the roids enhanced my sadness ten fold. I just couldnt function that way. I also gained ten pounds.
My thoughts are that the roids are working for your back b/c they are a massive anti inflammatory drug. As for your weakness and numbness, could that could be permanent damage ? I was told that mine is. I hate to believe it and I continue to hope to regain what I’ve lost, but, I know that the dr could be right. I cant toe walk at all or heal walk. I cant move any of my toes and have no feeling from the knees down. My hands are affected now with numbness on the top with a pin ***** and the tips of my fingers are the same.
I have hope that my hands will come back…more so than I think my feet can.
As long as you are tolerating the roids, I would continue b/c so many do get better on them. I dont mean to burst your bubble at all, I just wanted to share my story. But, again…so many people are on them and they do very well…and so far so good for you…hopefully in time, you will regain that strength and the numbness will get better !
I’m sure that mine isnt the story you wanted to hear..I just want to warn you of what can happen with your moods…and it’s like over night. Strangely, I could still sleep, too.
Is your foot flapping getting any better ?
I hope your daughter is ok with everything and I didnt know your mom wasnt doing well. I’m so sorry to hear that.
Will keep you and your family in my prayers…and please keep us updated ! Very best of luck to you !
AnonymousJuly 12, 2009 at 9:45 am
I thought I’d update this thread because it was the blow by blow from the beginning for me.
I eventually went on steroids in November after the GBS/CIDP symposium and
was hopeful that would work. a few weeks went by and I continued a decline
as my steroid dose was dropping every two weeks. I put myself back up to 60mg Prednisone and got really weak.
Called the Dr and he weaned me off the Prednisone and Hee Haw’d about my diagnosis being MMN or CIDP. I responded to Pred Like I had MMN but have Pain Like CIDP. at that point I need to come off Prednisone and was admitted
to HUP Phili for Trial of IVIG.
Within 3 days I no longer needed a cane and shown marked improvement.
We went on with 6 months of 2gm/kg dosing or 170 grams gamunex.
Had a follow up with Brown in April. By this time I was able to run but in pain.
Just had a followup July 9, 2009 and I have returned to almost full strength.
Dr has ordered another 6 months of 170grams per month or 2gm/kg dosing.
He wants me back to 100% He told me he has never seen such a response to IVIG as with me. He has been dealing with neuromuscular disorders since 1975. this made me very happy. After January 2010 he will reduce the amount and see how I do. I feel Blessed to say the least.
I hope all the best to each and every one of you. I have always been checking in from time to time but have been working alot. God Bless You All.–tim–
AnonymousJuly 14, 2009 at 6:54 pm
my history is GBS now CIDP. was completly paralyzed with GBS npw arms and legs are affected with cidp(tingling to my chin actually) no treatment for cidp yet. first neuro didnt do ivig so we changed. had mri done on my brain last week supposed to go b ack to doctor on the 21 for results. Now i am having prpblems with my bladder and trouble walking qand doing most things. Physixal therAPY HAS NOW SAID SOMETHING. getting fruastrated was walkng without my afo on left foot and driving now i cant do either.
AnonymousJuly 15, 2009 at 7:06 am
Sounds serious, I wouldn’t want to wait til the 21 to go over the MRI. Call the neuro and go over your current symtems and maybe they can get you in sooner. Sorry to hear it has gone that far. Keeep pushing Both your Primary care and Neuro perhaps have them talk. tim
July 15, 2009 at 6:31 pm
sorry no info
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