Undiagnosed but CIDP possible
AnonymousJanuary 10, 2007 at 4:27 pm
I am a new member and I would appreciate any input of others out there.
I am a 40 something wife and mother of 2 teenage girls. I worked as a Speech Pathologist in the past but I am blessed to be a full time stay at home mom now.
Last April of 2006 I started feeling the pins and needles, muscle spasms and muscle aches. These are constant throughout the day but only last for up to 10 seconds. These symptoms increased to every minute around May. I also noticed a difficulty walking up and down my stairs and getting in and out of a chair. (I can’t wear high heels either as it throws me off balance) 😉 . I thought I was just tired. My brain MRI was normal as were the blood tests for lyme and antibody tests. I have regular blood tests for my thyroid medication. After talking with 4 different doctors, my neurologist finally did an EMG and found slowing in nerve conduction of my legs and carpal tunnel. He suspects CIPD but admittedly isn’t an expert in the field so he is sending me to a specialist.
My problem is that I have to wait to get in 4 more weeks (February 2007). I had these symptoms for 10 months now and though the stabbing pains and spasms have slowed way down (around 4 symptoms per hour) the muscle fatigue has greatly increased. I have to hold on to the rails to get up and down the stairs and out of chairs. My legs can’t do it alone now. I can only exercise for 15 – 20 minutes at a time.
I am grateful to be able to do the things I am doing but I want to hold on to them and don’t want to regress any further.
What should I be preparing for the first meeting with this neurologist besides my paperwork? Any thoughts?
Thank you for your posts.
AnonymousJanuary 10, 2007 at 5:15 pm
hi taryn & welcome,
get copies of all your paperwork to date even if the specialist may already have them. from what you have said, it would surprise me greatly is he did not Dx you w gbs or cidp. even if not that, you obviously have peripheral neuropathy. Rxing ivig is the right choice here. it should have been done a long time ago. that & plasmapheresis [pp] are the only 2 methods available to attempt to stop gbs & some other nerve disorders. for cidp you can add other meds to it [i.e. prednisone], but a good doc will start w ivig cuz of the bad side effects of the others excluding pp. neuro problems are hard to Dx, but in your case you need an Rx, not an Dx. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 10, 2007 at 10:24 pm
Welcome to your new family, where we feel what you feel. You sound similar to me when I first knew something was very wrong. I always liked the idea of keeping a diary or journal because syndromes like GBS and CIDP are unknown and mean “I don’t know”, so a doctor can’t just look at you and see what’s wrong, you have to tell him/her what you are feeling.
Don’t push exercising too much, listen to the fatigue you feel. Treatments like IVIG (infusions) will be started to bring this syndrome under control and until progression is brought under control, exercising will only maintain what you now have.
Click on my username (codystanley) and email or PM me if you’d like to talk.
AnonymousJanuary 11, 2007 at 4:13 am
Greetings from across the Pond. Definitely document everything–as Jerimy and Liz said, keep a journal. Go back and list everything that’s happened so far (with approximate dates) and keep the journal for at least another year after you start treatment, so that you can see how treatments affect you, how you progress, etc.
Be sure you list things that you might not think are associated with CIDP. I began in 1994 with breathing and swallowing problems that went undiagnosed (the doctor said it was probably menopause, although I was only 39 at the time–still haven’t reached the change). I started with the tinglies and walking difficulty in 1999 (stairs and slopes are the bane of my life), and was finally diagnosed with CIDP in 2001. In 2003 my neuro and I were talking and I happened to mention the breathing and swallowing problems. She asserts that these are from autonomic nerve damage from the CIDP.
Best wishes in the battle,
AnonymousJanuary 11, 2007 at 2:54 pm
Thank you all for your kind words. I do have notes of dates and symptoms but I will definitely put them into a journal order.
Since I am in “limbo” until February, I almost feel that this is a dream I don’t want to be in. I worry about not getting treatment until then and then about what I am going to be getting. Does anyone just wait with the hope of spontaneous remission? As I read the posts (especially your reply Gene) it seems that the longer one waits the worse it is for the body to regenerate cells but as I said I am pretty sure I have CIDP its just not “official”.
Deb, my gums were my first sign that was out of the norm as my dentist and periodontist could’t find anything wrong. I have great pain from time to time in three different teeth when eating. I do specifically remember a bite on my foot, then 24 flu like symptoms with a temp. of 100. After that the pins and needles and muscle spasms started. I will add all those in the journal as well.
I look forward to talking to you all in the future and I will keep you posted.;)
Better health to you all,
AnonymousJanuary 11, 2007 at 3:18 pm
Be sure to mention the teeth to your neuro. Tooth problems aren’t listed as being included in CIDP, but I’ve been surprised at the number of patients who have mentioned that their teeth hurt for no particular reason. (One man had all of his fillings replaced, thinking that might be the problem. It wasn’t.)
Some people do have spontaneous remissions. My CIDP has changed over the years. From 2001 to 2005 I would stay fairly level (I’d have occasional bad days or weeks, but these would pass) unless I caught the flu (which didn’t happen often), which would bring on a major relapse and the need for IVIg. Two years ago, the IVIg stopped working, and since then I’ve been having relapses about every six weeks, then go into automatic remissions.
Problem is, no two of us are alike. The disorder, and its treatments, seem to affect each of us a little differently. The reason I mentioned keeping the journal for a year is that it generally takes at least that long to sort out how you’re going to be affected and what’s going to work. And then, in my case, after I got it figured out, it changed!
It’s a challenge.
January 11, 2007 at 6:01 pm
Your symptoms sound so much like mine – the pain, the weakness, even the teeth. The diary everyone is recommending is a great thing to take to the neurologist. Be sure to include the time of day when specific pains are routinely the worst.
Is there a reason your current neurologist is not qualified to diagnose CIDP? Has anyone mentioned a spinal tap?
Maybe I am just the luckiest person on these forums, but my neurologist diagnosed my CIDP as soon as the bloodwork eliminated the usual suspects and the MRI was completed. The spinal tap was just confirmation.
I started prednisone within a week of my first neurologist visit and was amazed at the immediate relief. Five years later I am still maintaining on prednisone. My recent physical with my family doctor shows I am healthy as a horse – except for the CIDP.
Come on over to the CIDP forum as well as here. There may be people there who can help but who have not checked the Main Forum recently.
AnonymousJanuary 12, 2007 at 12:49 am
I just finished writing a reply but pushed the wrong button on my keyboard and erased the whole thing. 😀 Please excuse me if it shows up somewhere but here it goes again.
Deb, I had my fillings replaced about six years ago and I saw that post you are referring to as well.
When asking about spontaneous remission I guess what I mean is remission without doing anything like ivig or plasma or prednisone. Are these the only way to heal CIDP? Mind you I am still walking and don’t want to wait until I can’t anymore but these treatments seem so intense. (As are the symptoms)
I was working on my journal this evening. Thanks for your post. I will definitely continue it after a year (I’ve had these symptoms for 10 months now which are slow and insidious).
Flossie, my neuro candidly told be that he didn’t have the expertise in CIDP,(which I appreciated) I believe he deals more with Alzheimer’s patients. He referred me to a neuro who according to Billt (from the CIDP forum) is a top specialist in Orange County where I live and thus the waiting list to get in.
My neuro did mention a spinal tap but wants the new neuro to deal with it. I didn’t think that it was always necessary for diagnosis. Is that true?
You said our symptoms are similiar. If you don’t mind my asking are you still walking? It seems like many members had acute episodes and were admitted to the hospital. At what point in your illness did you start the meds? How long before seeing your neuro did you have symptoms? I am concerned about waiting too long for treatment but for now everything is “stable”.
I’ve also heard some nasty things about the side effects of Prednisone. Are you ever going off of it? I understand one has to wean off of it slowly because of possible depression as well (Oh joy).
Congratulations on your health update. Keep it up!
Thanks all for your posts
AnonymousJanuary 12, 2007 at 4:35 pm
Well Gene I did have the emg/ncv and my neuro thought I might have CIDP as it showed a slowing of the nerve conduction. As for treatment any foreign substance might be hard for the body. I was wondering if the body could heal without these substances?
Ninus, I will check out the site you suggested, thanks.
I have my first bad cold so I’m a little off today.
January 12, 2007 at 5:51 pm
Ninus – Thanks for the American Autoimmune Related Diseases Association web site. There are some excellent articles there.
I have a bunch of CIDP web sites that might entertain you while you wait for your next neurologist appointment. If you want to PM me I can send them to your email address. Then you can direct click on them instead of having to enter them by hand. There’s even an electron microscope photo of the myelin being stripped.
I was told that rest and time could heal the effects of CIDP – once the attacks on the myelin have been stopped. It takes about three years to replace the miles of myelin in your body. Unfortunately for some of us we cannot stop the attack completely so the best we can get is a stalemate between losing and repairing myelin.
Naturally you are frightened of the various chemicals used to stop the myelin attacks. But you do need something to get back your quality of life. Remember that not everybody gets any or all of the side effects of the drugs. Do your research, ask your neurologist questions, come to the forums for support.
I had gradual symptoms for about 5 years before I mentioned them to my doctor – I thought I was getting old, or I just caught the flu more often than anybody else. My family doctor immediately used the word demyelinating and sent me to a neurologist. Within a week of starting the prednisone my CIDP symptoms began to subside – I haven’t had foot drop since. Of course I was also mean as a snake on high dose prednisone. Things are much better on the low doses – although I still see a mental health clinician on an irregular basis. It’s better my family learn to deal with stress issues rather than have the untreated CIDP put me in a wheel chair.
My CIDP symptoms are always amplified with any illness. I hope you are being very careful about your cold.
AnonymousJanuary 12, 2007 at 8:36 pm
neither ivig nor pp can heal. each has the possibility of stopping further damage. and yes, your immune system may stop producing the bad gbs antibodies all on its own. in either of the above 3 cases healing is the same. but pls remember that the faster the antibodies are stopped the better & faster the healing process will be. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 13, 2007 at 4:05 pm
Regarding your appoint with new neuro in Feb. If you haven’t already, you might ask if they keep a cancellation list where you could possibly get in to see him sooner if someone cancels their appoint. I’ve also found that sometimes when you explain your symptoms and your pain level to the nurse/person making the appointments, she can sometimes squeeze you in. Sounding a bit desperate can also help get seen quicker. I know how scary it is to have all these symptoms and not be able to get an appointment. That fear is what needs to come across to the person making the appointments. I say, whatever it takes, the sooner you can be seen by a specialist, the better. It’s worth a try; I’ve done it and it’s worked for me.
The Nerve Conduction Study and the EMG will tell him a lot. I never did have a spinal tap… my NCS/EMG results and all the MRI’s & blood work were enough to diagnose GBS (Aug 06). I was never in the hospital, only as an outpatient for IVIG treatment. I had seen two different neuros before being referred to the “specialist” in my area. I was mis-diagnosed with herniated disc by the first neuro (who promptly left on a 4 week European vacation!) 😡 Spent the next few weeks thinking my back was the problem. Sought out a 2nd neuro when my symptoms continued to worsen: weak legs, falling, pain & numbness/tingling in feet & hands. That’s when the 2nd doc ran the EMG/NCS tests. Once that was done it became clear that my very small herniated disc was not causing all these problems. Finally I was referred to the specialist. Even with a referral I had to employ the above mentioned tactics to get an earlier appointment. 😮 To date I’ve made a lot of progress. I’m still not as steady on my feet as I should be, and my feet still bother me, especially in the evenings, but as I’m sure you’ve read, I’m [COLOR=blue]G[COLOR=black]etting[/COLOR] B[COLOR=black]etter [/COLOR]S[COLOR=black]lowly[/COLOR]. [/COLOR]
[COLOR=blue]Good luck to you.[/COLOR]
[COLOR=black]Debbie in Miami[/COLOR]
AnonymousJanuary 14, 2007 at 12:33 am
If things get to the point where you cannot go up or down stairs at all or that you cannot get out of a chair without assistance before your February appointment, you should probably get your neurologist to start treatment. If your neurologist is not sure what to do, this website can give him good guidance: neuro.wustl.edu/neuromuscular [cut and paste and add http:// in front]. I found this website to be extremely helpful.
The reason you might want to wait, rather than starting treatment right now, is that you want to have a clear-cut presentation when the neuromuscular specialist examines you. It is unlikely that treatment would change the NCV results very quickly, but it is possible that your clinical presentation and CSF protein levels might change reasonably quickly as a result.
As Debbie in Miami suggested, you should probably call the specialist and explain you situation. If you can document day-to-day loss of ability, such as “Yesterday, I was able to go up a flight of stairs, but with extreme difficulty, whereas today, I could not make it up and had to turn around and use the elevator,” you are much more likely to get seen sooner. If not, and if you get worse from where you are now, ask your doctor to ask the specialist to see if he can see you sooner. Sometimes it helps if the doctor makes the request.
AnonymousJanuary 22, 2007 at 7:35 pm
My husband got me in to see the neuro specializing in CIDP and other neuromuscular disorders:D
Thank you all for your insights and experiences. It helps a great deal!
I had more blood work done today for all the IGM tests, heavy metals, etc.
They do suspect CIDP still on gross exam but want to do another more complete EMG and also a lumbar puncture to help confirm elevated protein levels.
After reading the posts on this forum for the last few weeks it certainly helps to know what I am getting into and relieves me a bit from anxiety.
My neuro suggests IVIG. He is not a big fan of Prednisone (yeah!)
I will be scheduled within this week or the next so I am holding on until then.
My cold did set me back and I have more difficulty getting up and down more than before but I’m still walking.
Thank you for your well wishes.
Well post an update when I get thru the next round of tests.
Good health to you all,
AnonymousJanuary 25, 2007 at 2:48 pm
Hi Taryn – boy! this does sound familiar! My symptoms began VERY slowly. I noticed a slow down in my walking and energy after I slipped getting out of a vehicle but thought it was because I hurt my back at that time. Well, I waited (I was out of my home state) for two months to see a chiropractor. He thought my waxing and waning weakness was due to the slip and fall – until I KEPT falling and I insisted he refer me to a neuro. It took several weeks to set the neuro appt. up and I kept getting weaker and weaker until I fell again and broke my ankle. My neuro sent me for MRI’s and bloodwork immediately! By the next appt. – 1 week later – I was unable to lift, walk, and was totally dependent on my husband to move around in a wheelchair. My neuro sent me directly to the hospital where I got a 5 day infusion of IVIG (miracle juice!). I have since had another 5 day infusion 6 weeks after the first one. By the time I got into outpatient infusion, once again I was not walking, lifting, etc. I really regret not getting initial neuro help sooner which would have gotten me the IVIG long before I became so symptomatic. Had a neuro appt. today and although it has been only one month since last infusion, I am beginning to get “pruney” on my fingertips, like all the liquid is drying up (which is an early indicator that symptoms are beginning to recur), so we have me set up for 3 days infusion next week – hooray! I can’t tell you what great relief and success I have had with IVIG – it truly has been miracle juice for me. I tried Prednisone, but had really bad side effects. What has been said is true, we are all different but have so many similarities! Hang in there, don’t be afraid to try the IVIG – it seems to work for most of us and the results are unbelievable! Good luck and good health!
AnonymousJanuary 25, 2007 at 5:51 pm
DeeDee: thanks for your thoughts. Four days later and I am still waiting for a more extensive emg/ncv and spinal tap before the possible/probable IVIG is started. I called the offices because though I have the patience of Job, and it seems like a lot of us do, I am no longer willing to politely wait for well meaning medical personnel to tell me the word “soon.” I’m glad I called because now I was told that they have to go the the authorization coordinator, then insurance company, etc, etc, etc. to get the o.k., and then book an appointment. I told the admin that I The lab admninistrator was sympathetic however and said she will be looking for the o.k.s to go through and contact me ASAP. (Hope springs eternal 😉 )
By the way, for all, I have been documenting my symptoms and will continue. Thanks for all that advice!
DeeDee, the indicator that you mentioned of your fingers getting “pruney”, which I completely understand, means reoccuring symptoms for you? Do others have that or is it your personal tell tale sign? My symptoms of sharp shocky pains, finger tremors, facial twitches, and muscle twitches continue daily but have slowed way down. Do the symptoms increase with healing, IVIG?
Good health to you all,
AnonymousJanuary 25, 2007 at 9:07 pm
Hey Taryn – yes, “pruney” fingers are usually my first indicator. Then comes numbness of the fingers, along with a change in urinating (it somehow feels heavier and warmer), and when I’m really getting symptomatic, inabillity to open bottles/jars, etc. Then I get really weak in my legs until I am unable to get up from chairs and finally (how humiliating) the toilet. By this time my hands and arms are completely useless and numb. My husband has had to quit jobs (he works as a pipefitter on power houses all over the country) to come home to take care of me until I can get “juiced”. That’s why I am now really aware of symptoms and my neuro and I are getting me IV’d before it gets to that “useless” stage. Haven’t had the twitches or sharp pains, but find that I am now aching in my back and legs. Could be the cold weather (I live in FL – it isn’t supposed to be cold here!!) and/or arthritis, but think it is the pains that others have been talking about. Hang in there, girl! Don’t let the hospital (etc.) get you down. Believe me, you are your best advocate, and only you know how bad your symptoms are. You almost need to be aggressive until you get the diagnosis/treatment you need. You have joined a great family here! Good luck and good health!
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