Hi Bryn,

My husband has CIDP-MADSAM and he gets IVIG every 3 weeks since 2007. He gets tight muscles in his thighs. He doesn’t describe it as pain, but uncomfortably tight muscles. Usually it happens if he over does the exercise.

I have MS and get tight muscles and spasms too especially with over doing it. Rest helps both of us to re-group. But we do both try to exercise regularly. Tomorrow we are going to try the Silver Hair Ice Skating program at the local rec. centre. Neither of us has skated in years and both of us are pretty uncoordinated so it should be an experience.
Laurel

[QUOTE=Bryn Jones]Hi
I’ve been a CIDP sufferer for about eight years and have had most of nther available treatments, but to no effect. The last six months have been a struggle and it’s getting worse. The question I’m asking is does anybody have pains in the thigh muscle and groin area?[/QUOTE]
Last week I had what felt like electical shocks in the inner thigh very near the groin. I have had this several times before but never above the knee. It is extremely painful. The pain is pulsating and occurs about every minute. I now have a medication to take when it starts. This calms it down in about four hours. Before the medicine it would continue for about 24 hours. I had my third treatment of IVIG this week. I hope it will also help.

Almost all of my pain is around my bladder and stomach. I have had pain for two and a half years. I am convinced it is nerve damage in the lining mostly where a hernia would be. The pain is always there. Between Neurotin and Tramidal I get by OK. Because it was not the normal thing that normal people with CIDP it took months and eleven doctors to finally figure it out. Keep going until you find a doctor who will get the best treatment and the best pain management without too much pain medicine

Hello Lori,

Welcome.

I’m sure you’ve read many times ‘every case is different!’ Well, our similarity could be the slowness of the progression. From first onset of my left foot drop to my right-handed weakness, more than 30 years went by. I guess the similarity ends there.

You asked about response to IVIG. In my case, I had five days worth over five days. On the Monday following my week in the hospital, my bilateral grip strength increased from 11/21 lbs to 18/55 lbs.. This is the measured number by the Occupational Therapist using the “Jamar” dynamometer.

So, you see, initially I had what could be called ‘rapid’ improvement. Particularly on the left, stronger side, because the right is not expected to improve due to the degree of axonal loss.

However, the effect did not last. Ultimately the doctor stopped the infusion as ineffective after about 5 months of 2 days in a row once a month treatment at .4g/kg each day. My grip decreased to as low as 5/35 after the infusions stopped (probably even lower, we didn’t measure it). I could barely open the car door on our trip to Mayo Clinic.

Mayo Clinic stated perhaps my previous infusion was neither aggressive enough nor often enough. Mayo restarted me on IVIG and since then I have improved to 11/51 lbs.

Oh, subjectively, a lot of little things improved. But, that is my opinion, see? It was nothing the first infusion doctor measured. Heck, they didn’t measure anything! Mayo on the other hand are very specific in what they measure. When I returned this spring they said “yes, your emg/ncv are improved!

Mayo also said it could take a month or more following each infusion to see results and that I should continue infusions for at least one year.

I was surprised by your diagnosis because it’s another one I haven’t heard of. I looked it up. Here’s what the NIH said:

“Benefit was reported for 34 of 38 patients (89%) receiving immunotherapy and was marked in 50%. CONCLUSIONS: The spectrum of neurologic manifestations and neoplasms associated with voltage-gated potassium channel (VGKC) autoimmunity is broader than previously recognized.”

Read the whole deal here: [url]http://www.ncbi.nlm.nih.gov/pubmed/18474843[/url]

In another post I gave a link to the pharmacists’ society IVIG spreadsheet. Seems to me they list the 1/2 life of IG at around 21 days. So, and it’s certainly only my opinion, your receipt of 5 days’ worth of IVIG in 2 days once every three months leaves a lot of time for the ‘effect’ to wear off.

Sorry, can’t speak to the thymus nodule except to say get at least one more opinion from some great place.

Good luck.

[QUOTE=Lori222]am new to using the forum board so forgive me if i mess up while trying to post or reply. I have been reading these posts from you all ever since being diagnosed with cidp about a year and a half ago and find the info very helpful.. I started gammunex ivig treatments in june of 2009–i have 5 days worth in 2 days every 3 months. Im just wondering what some of the signs of improvement are. my cidp came on so gradual that there were things i didnt even know i couldnt do anymore until i went to do them. i was running 5 miles per day, coaching my sons soccer and my daughters sofltball teams and teaching a fitness class at the area gym –just 4 years ago so im thinking i did not have any signs of it then–does anybody else have this type of cidp–that started so gradual thatyou really cant pinpoint exactly when or why it started?? extremely frustrating when youre used to being so active. it affects my lower legs and feet, alot of numbness, cramping in the legs, pins and needles and weakness. sometimes my feet feel claustrophic in my shoes– if that makes sense.
the diagnosis is voltage gated potassium channel antibodies–my body makes antibodies to potassium–auto-immune and the neuromuscular symptoms are the result. I go to the lahey clinic in mass. and have been told this is very rare–ive also been told that im lucky to at least have a diagnosed reason for the cidp because a lot of people dont. a year ago i was told i had a 8mm nodule on my thymus gland a recent ct scan showed it to be 5mm now–but shoulnt i be concerned that there is even a nodule there at all? i mean if there was a nodule and no syptoms then i would ignore it but the fact that im having neuromuscular symtoms makes me wonder if the thymus gland could bre responsible for making these abnormal antibodies. I guess im just looking for any feedback on the thymus, the whole potassium thing. and ivig treatments—i feel better since starting them a lot less fatigue but the emg/nvc test showed to be the same after 4 treatments–maybe not enought time for nerves to heal–how can i tell if theyre regenerating—so many ?s sorry–its just that all my friends/family just dont get this—and i really need to vent and talk to someone whio has a clue what im talking about. Lori[/QUOTE]

Lori, In my case, the numbness in feet and legs began after some sort of insect bite, followed by a viral-type infection. Then a new symptom would appear every 6 months or so. It took me over a year to finally see a neuro–when it began to affect my gait and balance. However, I do believe I had slight drop foot even before the insect bite/viral infection that preceded the numbness. i would notice, for example that, while walking, my left toes would catch on the curb. That may have been how my CIDP started, and then with the bite/virus my immune system went into full fledged overdrive, causing numbness, etc.

Like you I have numbness, shocky sensations, weakness in lower legs and feet. Also hands are somewhat affected (one of those “every 6 months” symptoms).

Also, and this is interesting, a nodule was found on my thyroid (not thymus). It appeared to be benign and so I was told it probably wasn’t anything to worry about.

There are others on the forum who have had thyroid issues…also back problems–disks, stenosis, other degenerative conditions . I had C-4 and C-5 disk problems for months before I had a endoscopic diskectomy. My theory, for what it is worth, is that long-term inflammation caused by chronic back problems such as I had contributed to making my immune system hyperactive, thus pushing it one more step toward a full blown autoimmune attack. I should point out that the back problems preceded the CIDP by 8 years, but I don’t think the timing is important…what is significant is that it racheted up the immune response.

I picture water dripping into a glass. Drop by drop, the water level rises. Maybe someone fixes the spigot so no more dripping (ie inflammation) for eight years. But then the washers (or whatever those rubber things are in faucets) give out and the dripping starts again…until one day the glass begins to overflow and voila! a full blown autoimmune attack.

Sharon

[QUOTE=Lori222]am new to using the forum board so forgive me if i mess up while trying to post or reply. I have been reading these posts from you all ever since being diagnosed with cidp about a year and a half ago and find the info very helpful.. I started gammunex ivig treatments in june of 2009–i have 5 days worth in 2 days every 3 months. Im just wondering what some of the signs of improvement are. my cidp came on so gradual that there were things i didnt even know i couldnt do anymore until i went to do them. i was running 5 miles per day, coaching my sons soccer and my daughters sofltball teams and teaching a fitness class at the area gym –just 4 years ago so im thinking i did not have any signs of it then–does anybody else have this type of cidp–that started so gradual thatyou really cant pinpoint exactly when or why it started?? extremely frustrating when youre used to being so active. it affects my lower legs and feet, alot of numbness, cramping in the legs, pins and needles and weakness. sometimes my feet feel claustrophic in my shoes– if that makes sense.
the diagnosis is voltage gated potassium channel antibodies–my body makes antibodies to potassium–auto-immune and the neuromuscular symptoms are the result. I go to the lahey clinic in mass. and have been told this is very rare–ive also been told that im lucky to at least have a diagnosed reason for the cidp because a lot of people dont. a year ago i was told i had a 8mm nodule on my thymus gland a recent ct scan showed it to be 5mm now–but shoulnt i be concerned that there is even a nodule there at all? i mean if there was a nodule and no syptoms then i would ignore it but the fact that im having neuromuscular symtoms makes me wonder if the thymus gland could bre responsible for making these abnormal antibodies. I guess im just looking for any feedback on the thymus, the whole potassium thing. and ivig treatments—i feel better since starting them a lot less fatigue but the emg/nvc test showed to be the same after 4 treatments–maybe not enought time for nerves to heal–how can i tell if theyre regenerating—so many ?s sorry–its just that all my friends/family just dont get this—and i really need to vent and talk to someone whio has a clue what im talking about. Lori[/QUOTE]

John – Wisconsin
My CIDP took several months to become acute. I didn’t realize there was anything wrong until I realized my face was going numb. Several doctors and many tests later, it was deterimed that I had CIDP.

[QUOTE=Anastasia52]
I picture water dripping into a glass. Drop by drop, the water level rises. Maybe someone fixes the spigot so no more dripping (ie inflammation) for eight years. But then the washers (or whatever those rubber things are in faucets) give out and the dripping starts again…until one day the glass begins to overflow and voila! a full blown autoimmune attack.
Sharon[/QUOTE]
[I]
A perfect word picture, Sharon![/I] 😉

Hi Lori,

Before I had a diagnosis of CIDP, I can remember after having a nerve conduction test my Neuro mentioning that I may have an ion channel disorder. Though, after my visit with him (a few months later) he then told me I had CIDP.

Mine came on gradually at first (about 10 years ago)…two numb toes and slight weakness. Then after a few years of that…I started having mild attacks (weakness, tight band-like pain around abdomen) which then lead to a more severe attack several months after the first mild attack.
It has now become more slowly progressive (as opposed to having actual attacks) and the symptoms are always worse after I overdo things…so I have to take things easy…which is always easier said than done.
Unfortunately, my Daughter may have CIDP too, as she has been experiencing symptoms similar to mine for quite a while now (she has two small children and another on the way).

Good luck 🙂
Kazza

Hi & welcome!

It doesn’t take weeks to get back spinal tap results. You should call your dr Monday morning & ask what the results are. Sometimes office staff forget to call with results or dr’s think it’s ok to have the patient wait until their next appointment. When is your next appointment with your neurologist?

What treatment(s) did you receive after your GBS diagnosis?

Kelly

Hi Hugh,

If it were me, I would go to your appointment. However, if symptoms get worse, insist on an appointment NOW.

Ask him what his plan of attack is. I wonder why your doctor has not made any medical decisions on you- especially when you were diagnosed.

Not to undermine your doctor; however, please seek a second opinion if this does not get better.

Best of luck!

dennis

Welcome Hugh, though sorry you are having problems.

Your neuro should have told you that spinal taps are not conclusive. Fortunately for me my spinal tap did confirm CIDP (fortunate in that I was treated quickly).

So a “stone cold normal” spinal tap results doesn’t mean you don’t have CIDP. I hope you don’t, but keep driving towards diagnosis. The one thing I have learned is that you have to be your own advocate and being pushy is a good thing. If you don’t feel your diagnosis is correct it’s probably not. Many Primary Care Physicians have actually never heard of CIDP, so don’t rely on the PCP.

Praying you will get a quick, complete and correct diagnosis.

Gary

Welcome Hugh to this forum. We are all empathetic that you are having to travel this road, but hope that sharing the travel will help.

GBS and CIDP are complex syndromes with a lot of different manifestations in different people. Sometimes the diagnosis is easier and sometimes harder and this does not mean than your care has been substandard–just that you are an individual and doctors want to be sure before labelling someone with a serious illness like this–with all the emotional and insurance implications, etc. The members of the forum are very vocal in saying to advocate for yourself and this is extremely important. Sometimes for me, there is recently too much negativity about medicine–even the statement that doctors are stupid. This is a sweeping generalization and you should take it with the understanding that the purpose is to indicate that you should advocate for yourself and listen to what your body is saying.

Having said this, I also would like to state a couple of logical reasons that this current episode may not just be residuals.
First, you have NEW symptoms, as I understand it–new weakness in the arms and new right lower leg weakness. From what I have heard and read, residuals do not show themselves as new major and significant areas of involvement. They usually are residual to areas and manifestations previously seen.
Second, you said you lost reflexes with the “GBS” episode and got them back and now lost them again. Reflexes are a sign of conduction inside the body. A residual is inadequate healing. To lose reflexes again means that there is new damage/changes. Testing of reflexes is VERY dependent on the person doing it, I have found after seeing several doctors at a teaching hospital and elsewhere. If the same doctor found reflexes to be gone, to return and then gone again, this is significant.
A less definitive argument, but still a worthy one logically is that residuals usually do not show themselves as ALL of the original symptoms together–but rather as a part of the original.

This is not meant to be discouraging, but rather a statement that probably the jury is still out in your case as to what exactly this is. Listen to your body. The best thing for residuals is to rest, rest, and rest some more. Time horizontal is what people argue for–meaning that it seems more important to be lying down to rest (even intermittently) than sitting down.

WithHope for a cure of these diseases

Hi Hugh,

My spinal tap was normal. I never was told I had GBS, but just a long time in getting a solid CIDP diagnosis. For me the Dr could actually tell activity while performing full EMG. One time he told me it was inactive, when I went down hill, he did it again and said it was active. Probably from changes, but not sure. I kinda had the CIDP in my head long before any doctor told me of it.
self diagnosis sort of, based on searching. When they told me it was a sigh and cry type situation. Sigh of relief it wasn’t fatal, and cry because of the long road ahead. Stay positive as possible but keep pushing the doctors.
All the Best, Happy Thanksgiving.–Tim–

Some people have had normal emg’s. Did Mayo do a l/p or ner ve biopsy? I would imagine MD, Lupus, CMT all have been r/o as well. Typically, any of the previously mentioned diseases WOULD show up on an EMG. Was the EMG done early on? Is it possible you had a mild case of GBS? So sorry I cannot be of any help. Keep inquiring and asking. There is a form of neuropathy called DADS, try looking into that. Good luck.
Dawn Kevies mom

multifocal motor neuropathy presents asemetrically and is sometimes mistaken for als. I dont know much about nausea and neuropathies. I have not been diagnosed fully but my first emg/ ncv were negative. I had my new doctor run the same tests one month later more thoroughly and my ncv was healthy but my emg showed denervation. I am finding out that there is a vast sea of illnesses related to neuropthy and very few if any come with a one step easy diagnostic kit. good luck to you. Ill say what everyone has said to me and thats dont give up.

I know that my daughters nausea is most likely caused by autoimmune and her neuromuscular specialist believes so too. She takes 1ml of zofran daily and she never mentions it anymore. He said keep in mind that there are nerves in your stomach and bowel that can cause nausea and constipation and that seems logical to me.

Butterball–I am the Dx Journes with my husband, who we are beginning to suspect has CIDP (we should know in the next few months). But I have to say that dealing with neurologists here in the Central PA area has given me an impression that many neurologists are fixated on ALS (b/c that’s where the big grant money is, perhaps?). My husband has also been told several times that he doesn’t have ALS. however, he is still very ill and getting sicker by the month. Reading this message board has convinced me that we need to get a Dx FAST b/c if it IS CIDP, he needs treatment to prevent further deterioration.

so…my unsophisticated, gut-reflex reaction to your plight is to suggest (respectfully) that you should try to find a nearby neurologist who is familiar with the types of ailments you might suffer from.

I have noticed that if you post where you live (generally) and ask the folks on this thread for suggestions, you are likely to get some decent neuro suggestions.

Best of luck. Hang in there.

I used to be a proofreader for a living, but you can’t tell it from that last post!
what I MEANT to say is: I am on the Dx (diagnosis) journey with my husband.
hopefully that will clear up the mystery. 🙂

Hi Katie, Welcome to the Family.
The first thing I would try would be to slow down the infusion rate. It seems like an awful lot in a short amount of time. The rate should be slow and can be ramped up slowly, if you are getting good results from the ivig then slowing the rate might take care of your headache. Do you premed with benadryl also? Might try that if you don’t. Fluids help to keep you hydrated. If you are dehydrated you would have a much harder time of getting a vein to stick. Instead of running hot water, try warm towel compresses on your arms. If you are really hard to stick then ask your dr for a port to be put in-easier access. No need to suffer anymore then you already are. Take care.

Hi there. My daughter is 7 & has been getting IVIG treatments since she was 4. I know A LOT about them!

If you are getting 70 grams, 3 days in a row, every 4 months then you can ask to break those treatments up. That divides up to 52.5 grams per month. You can ask to get treatment every 4 weeks instead of a huge dose once every 4 months. That should help with the headaches greatly!

My daughter gets 20 grams for each infusion & it lasts 2 hours 45 minutes & she goes fast. I’m guessing your treatments should last for 7 hours each day. I know that sounds like an awfully long time but that’s why I first suggested adjusting your frequency so you aren’t stuck getting treatment for 21 hours over 3 days.

The headache is part of a reaction to the IVIG so Benadryl should help with that too. You can also take Aleve – some people have better luck with it. If that doesn’t work you can ask to be pre-medicated with a small dose of steroids as that helps with side effects too.

As for getting a port….let me tell you it has been a LIFE SAVER for my daughter. As I mentioned she is 7 & she plays like a normal 7 year old & it does not bother her at all. I don’t think children will get any more rough with you than they do with her, so I think it’s something you should consider. It has made life SO much easier. She’s a difficult stick & it would take 6,7,8 attempts to get an IV in her. Having the port is easy because we numb it before hand, the nurse sticks her & we’re done.

And finally, you are going 4 months between treatments & that is AWESOME. Has the dr considered that you might be in remission. I ask because the standard thought is that IVIG has a full life of about 41-42 days. That means it stays in your system for that long. So after that you are going without IVIG & if you aren’t having symptoms then I would think the dr would be thinking you might be in remission.

What was your treatment schedule like before?

We had Emily up to 20 grams every 3 weeks & tried to stretch her to every 4 but she relapsed. We had to start back over & are currently staying at 20 grams every 2 weeks until cold & flu season is over. After that we’ll bring her back up to every 3 weeks again. I don’t know when we’ll try for 4 weeks but it won’t be for awhile.

Hope that helps.
Kelly

Kate, assuming that you’re being infused with a 10% solution, the total infusion amount, per day, would be 700 ml. If you’re receiving 700 ml over a 4 hour period, the infusion rate is 175 ml/hr. That’s not fast for some people and it’s very fast for others. I’ve had infusions as fast as 200 ml/hr. My current neurologist will not go any faster than 125 ml/hr under any circumstances. Severe headaches are one of the common symptoms of a rapid infusion rate.

As Kelly noted, you can either slow the infusion rate or start slowly and ramp up gradually. Slowing the rate to 125 ml/hr would only add an hour or so to your infusion time. Small doses of a steroid, such as Solumedrol, may also help. When I don’t get premedicated with Solumedrol, I break out in hives and my lip swells.

Hang in there and keep us posted as to your progress.

sorry no info

Katie – Emily’s port is noticeable because she’s a skinny-minny. It’s not terrible looking though & cannot be seen through clothes. She still wears tank tops in the summer & bathing suits. I do try to find shirts that will cover it but to her it’s not a big deal. If it’s covered then no one knows it’s there. Most people haven’t even noticed it when it’s not covered – I’m always paranoid that people will be staring at her & I haven’t noticed any staring at all.

Kelly

[quote=Dawn Kevies mom]About the remmission comment by Kelly, it could be a consideration. As mentioned, ivig has a full life of 42 days. [/quote]

Hi Dawn,

Assuming that a patient is given 100 gm of IgG, and further assuming that the half-life of IgG is 21 days (although there is considerable disagreement on this), at the end of the first half-life period (21 days), there would be 50% (50 gm) of the original 100 gm remaining in the body. After the second half-life period (total of 42 days) there would be 50% of the amount of IgG present when the half-life period started (50 gm). So, at the end of 42 days, the body would still contain 25 gm (50% of 50% of 100 gm). If we also assume that the patient doesn’t receive any more IgG, then at the end of the third half-life period (total of 63 days), the body would contain 50% of the amount of IgG present when the third half-life period started (25 gm), for an ending amount of 12.5 gm.

So, if someone is on a 42 day schedule, their body still contains 25% (25 gm) of the original 100 gm dose at the end of 42 days. Start the new treatment round and add the new 100 gm dose, and the body now contains 125 gm at the beginning of the first half-life period. At the end of the second half life-period, the quantity present is 31.25 gm.

Beyond this point, the total amount remaining in the body after the second half-life period climbs much more slowly than it did in the first two treatment rounds.

I just wanted to make the point that even if you’re starting on a 42 day infusion schedule, you’ll still have 25% or the original infused amount of IgG when it’s time for your next treatment.

I think my head just exploded with all that math!!! 😮

I used to get WICKED can’t move my head, can’t even turn on the lights, don’t make any noise type of headaches after the infusions. They almost went away when we slowed the infusion rate down from 200ml/hr to 100mL/hr and then when we changed the schedule to once a week rather than three days every three weeks they basically disappeared. I think I was getting too much IVIg at one time and changing to a one day a week schedule has allowed my body to process it better. I’ve lost nearly 20 lbs, I haven’t had a headache in two months and I don’t throw up from the infusions anymore.

Just for the record my doctor told to drink caffeine to keep my kidneys working well, along with lots of water. I guess everyone has different opinions.

Hi Rod,
Yes, there is speculation as to the full life of ivig. At the symposium, two of the docs were speaking amongst themselves and I overheard the one doc say he feels two weeks max is the full life. (I wonder if it is closer to 3) Anyway, that info would change the percentage of ivig left in the body between the treatment schedule. Also, Katie mentions her schedule is 90 days, so I would assume ivig would be out of her body.
There is so much trial and error, speculation and unknown in ivig, it makes it hard for us to gauge anything!!!

It would be so wonderful if Katie is in remmission!!! I am thinking about good things with Kevie too, I am just to scared to space out the ivig more. I am going to start a thread about it, see what you think and let me know your thoughts.
Dawn Kevies mom

Hi Katie,

I get headaches too. I am new to IVIG. Had it twice. got real bad headache the first time, not so bad one the second time.

I get it at a rate of 100 ml per hour and it takes all day. Perhaps slowing yours down will help. I guess it depends when you get the headache. If you get it two days after, I don’t know if slowing down will help. thats what happens to me. like day three or four the headache sets in.

the water is important, I think It may prevent more problems than we know.
There are alot of options for you with your wide frequency. I am sure the doctor can make an adjustment and yet stick to his plan. Slower would be less disruptive.

Good Luck Katie!

I used to receive a high rate of IVIG 2g/kg over two days, which was about 4-6 hours of infusion per day, and would get very bad headaches the day after even with a slow infusion rate. My dr prescribed Phenergan that I would take after my second infusion and reduced the severity of the headaches.

My current doctor has me on Gamunex at 0.4g/kg over two days which is supposed to have fewer side effects. I’ve had very little side effects since switching (other than drowsiness from the Benadryl).

Damon,

Thank you for sharing your story and I am truly glad to hear that you are going back to unrestricted duty. I wont ever forget that inspirational link you posted way back (come to think of it, it must have been shortly after you were diagnosed) – since then I have seen you around now and again, but really am thrilled to hear your good news. I think the success of the pp and cellcept you recieved may be of help to some I know are not finding any relief from IVIg or sterroids. Thanks again for sharing. 🙂

Damon,
what great news. I am happy for you! Keep up the good fight!!
Dawn Kevies mom

Hi Brie,

I think a fair number of people are diagnosed with GBS first, then CIDP if it continues to progress for a longer period of time (acute vs. chronic). I’m afraid I can’t tell you the exact details of how a GBS diagnosis becomes a CIDP one, but there are several people on these boards in your situation and hopefully one of them can shed some light!:) Just to let you know that you’re definitely not alone because I’ve read stories of others in the same situation.

Take care!

Brie if you continue to get worse after 8 weeks of getting GBS then it is CIDP. The worse of GBS is week 4. So by going back to get your nerves tested in a few months time is a good idea. But in the meantime if you get worse please go get rechecked and get IVIG treatments. I got CIDP in the fall of 2004 got my first 5 days of IVIG last summer and my second round of 5 days 3 weeks ago.

I hope you keep improving

Sue

Hi Brie,
Kevin (my 11y/o, then 10) was dx gbs first, then cidp. It was a very strange progression, I drove many on the forum nuts, I am sure. Kevin seemed to be doing ok for the first 4 months after the first ivig, then he started getting tired and we were going to go to the hosp for additional emg/ncv and more ivig. But then days before we were to go, he was strong again. You do not mention ANY weakenning, so that is a little confusing. The doc made us go in even though Kevin was stronger (a couple of days after a flare up) for the ncv/emg and there were some nerves that worsenned, and a couple that were the same and a couple that were better. He reccommended the ivig and I agreed, figuring that the only way I would know for sure was if there was a marked improvement with additional ivig, and there was, it was cidp.

Our nightmare cont., he had 4 more monthly loading doses and he was 100 %, they did a repeat ncv/emg and EVERYTHING was normal, gbs dx AGAIN, it was not typical to have a full recovery w/cidp in that short of time. 5 months went by w/ no ivig, thinking it was gbs and weakness started again, repeat ncv results show some worsenning. So that brings us to now, CIDP, monthly 4 day loading dose ivig (that is what our doc feels will give us the best opportunity to beatthis, as Kevin has not entered puberty yet and his immune system will go through a change. Hopefully the high dose ivig and puberty will get things back on trac.

So, it is possible you have cidp, gbs would not show a worsenning of ncv, on the other hand, the continued stregnth is perplexing. I guess you could do what we did at first, try to relax, then try another ncv in a couple of months, if it is worse, you have your answer and ivig is warranted. Good luck, and as I tell Kevin DO not give up, we have a medicine to help us and it is not a harmful medicine compared to others.Best wishes.
Dawn Kevies mom

I went back & read all of your posts & it sounded like a classic case of GBS to me. For how paralyzed you were, I believe your recovery was very short & you seem to be at around 85-90% I think you said? So then why did you even need another EMG if you were doing so well? Did you have a setback or a weakening of your legs or arms? I can’t imagine why they would suggest CIDP if you are doing so well, please elaborate a little…
Pam

Brie,

I totally agree with Pam, you have been doing so well and it really hasnt even been that long since diagnosis.

ivig itself does not help the nerves regenerate. It halts the production of autoantibodies, letting antibodies produce. During this time, the attack is stopped. As I mentioned before, the fact that your stregnth has not faltered, makes me think it is gbs. If it is true gbs, ivig would not help. It has nothing to do with actually healing the nerves. This only happens a mm a day when there is no active attack on them. If you truly have gbs, then there is no attack taking place and your symptoms are residuals.

I wonder though why some nerves showed a worsenning, we were told that there is no additional diagnostic damage with gbs. Is it possible that the first test was done by someone different, or perhaps the same nerves were not tested. Another possibility is that there was not enough evident diagnostic damage on the first test, so it appears worse now.

The only true way to know, and even sometimes that does not show an active attack would be a spinal to check for elevated protein, indicating an active demylienation. If the doc does not want to do that, maybe another ncv/emg in a month or so to see if there was MORE damage. If you were to wait, you could not do ivig and then the test, because if you had the ivig and a ncv a month later, it would probably be better because you stopped an active attack and the nerves had some time to heal.

It is very difficult to decipher between gbs and cidp when you are borderline, that is what happened to us for the first year or so. Good luck.
Dawn Kevies mom

Hi Brie,

I have to agree with the other’s that it sounds like GBS, and that you have made a very nice recovery. Even so you may not be back to 100%. If you are just healing slowly, that’s normal. If you feel like you are losing strength or getting worse then I could see a possible CIDP diagnosis.

I was dx with mild GBS, seemed to sort of get better albeit REALLY slow, and then got worse again. Got better with IVIG, got worse, etc. and we now have a diagnosis of CIDP.

You have asked some really good questions though and it seems like your physicians are nice enough to be concerned. But if they don’t have that much experience, they may be expecting a quicker recovery. My first neuro just finally said he didn’t have an answer. He couldn’t explain why I was getting worse, etc. and I was referred to a specialist. I would give it some time, IF you aren’t losing strength. Good luck and enjoy mommyhood:)

Brie,

Your husband is completely correct, they dont know how bad your nerves got. Doing an EMG a week into diagnosis will not give a correct reading as the disease continues to attack the nerves. In a talk given by Dr. Cornblath last year, he mentioned that if EMG’s were done too soon, the readings would not be accurate because the progression wouldnt be complete.

With regard to IVIg ……

This comes from an article in Summer 2006 called “Whats in a Name” . I am pasting this exert in because it mentions that IVIg does not help with nerve recovery.

[LEFT][QUOTE]
A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. [B]IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery[/B]. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued progression of symptoms (not continued persistence of symptoms).
[/QUOTE]

Also, in a book written by Gareth Parry and Joel Steinberg called ‘ Guillain-Barre Syndrom, From Diagnosis to Recovery……When they speak about IVIg they mention that the reason IVIg seems to work is that the nonspecific antibodies in the donor IVIg may bind to the specific antimyelin antibodies attacking the nerves in the patients with GBS therefore neutralizing them. Therefore, if you are in the recovery phase, IVIg wont do the abovementioned as the antibodies are not attacking the nerves anymore.
However, ….. having said all that, I do know of [B]one [/B]patient who does have IVIg once a month since being diagnosed with GBS. I dont know what his doctors thinking is behind it, because, to me, it doesnt seem to have any benefit, except maybe make him feel less tired or down for a day or two afterwards. So far, the recovery has not been any better than any other patient.

[/LEFT]

Paul,
Welcome aboard.

Good to see you posting Paul! Sometimes a problem shared is a problem ……halved??? well… not quite, but sometimes it helps 😉

Are you receiving treatment or taking anything for depression at the moment?

Paul,

Thanks for posting your message. I have CIDP and have been quietly reading all the posts everyday. I have also left my job. It is an odd feeling…my mind wants to go and be “Normal” but my body is yelling hey wait for me!Doctor wants to see if pain goes down at all. I have had three rounds of IVIG over the last year. I am off work for three months. My feet hurt and tingle everyday, my hands tingle and I get shooting pains. The IVIG has helped the shooting pains but not the tingle or pins and needles, numbness.

Right now I am taking life one day at a time and see what happens!

Take care and thanks for sharing it made me feel that I am not alone in my feelings toward this whole thing.

Rhonda:p

Paul and Rhonda,

I know exactly what you mean. I got GBS in 98 and had to leave a job I absolutely loved—I was a school social worker–and was never able to go back. I tried another job in my town and worked full time for about 5 weeks and it all went downhill from there. I tried going back 3 different times and could only work sporadically. To me, having my body fail each time was the hardest. It’s like for awhile you can almost pretend that will power can MAKE your body get through a bad time, but it doesn’t work that way, we all know it makes it just taht much worse. I know how depressing that can be because it’s another loss for us. I am on an antidepressant that works somewhat, doesn’t make me feel great, but just not horrible. You also might want to try to do any type of exercise that you can do without feeling like crap the next day. Eating right is important too. I dont’ know if either of you have trouble sleeping because of the pain, I average about 2 nights a week of total sleeplessness–that really doesn’t help:)Please keep writing to us and let us know how we can help–just getting it out sometimes is the best. Take care,
Lisa

Lisa,

Yes, it can be depressing facing reality that I can’t work. Things could be a lot worse! Sleepless nights are common because of pain, but at least now I can get acouple of hours in the morning if I am not running off to work.

Taking 1 day at a time. Has anyone tried accupuncture for pain?

Rhonda

Peggy,

For me the fatigue is terrible and even the doctor has made statements like, “I have patients in wheelchairs that still work.” My friends however, know how this has affected me and are very supportive.

The hardest part for me has been admitting to myself that I cannot do the things that I used to:

I used to have a good job.
I used to ride a motorcycle.
I used to go Jeeping regularly.
I used to enjoy going to gunshows and shooting.
I used to enjoy sitting on the patio on a warm summer evening.
I used to get in the car and drive halfway across the country without stopping.
I used to enjoy taking walks with my bride of 34 years.

Life as it is now:

I am on disability and no longer work.
I do not have a motorcycle due to issues with heat and balance.
I still have a Jeep, but only get to go Jeeping rarely.
I no longer do any shooting, but I do go to gunshows on the good days.
I no longer sit on the patio as the heat just kills me.
Same for the walks, it is just too hot.
I am unable to drive any distance now and must have a copilot at all times it taking a long trip.

However, through all of this I have come to have a new appreciation of life and what it means.

I am now able to take the time to “stop and smell the roses.” I didn’t do this before, I was too busy.

I spend a lot of time on the internet for my Jeepin fix.

I am relearning the guitar.

Music means much more than it did before the illness.

I value the time with family more than before.

I play a lot of online poker to keep my mind active.

I guess for me, I really try to find the good side of life now and when the illness kicks my butt, I just have faith that it will get better. Dont worry about what other people think. It’s what is inside that counts.

I read a book called, “You Don’t Look Sick: Living Well with Invisible Chronic Illness” by Joy H. Selak. I read this after I had been sick for a couple of years, it gave me a lot of insight into dealing with the illness. I would highly recomend that you read it.

Good luck. There is a lot of good info on this site and always someone to lend a sympathetic ear.

Hutch

Hi Peggy,

It is really hard for me sometimes when I am out in public and even though I look like a completely healthy 24 year old, I am not. I have had many rude looks and comments when I am too weak or too tired to walk around a store and have to use the electric carts, or when I get out of my car and have parked in a handicap spot, or am out with my friends at the bar people think that I am drunk all of the time but it is really the residuals I have been left with like tremors and balance loss.

I have had multiple relapses and at my worst was a complete quad, on a vent, and a feeding tube. I have currrently been in remission for 10 months from my last relapse and am doing pretty well most days, but I still have a lot of bad days, especially in this heat, it makes me so tired.

However, I do have a big whole in my neck still from when my trache was taken out 1 1/2 years ago, so if people are paying attention to me they notice it and cut me some slack, but otherwise I can not beleive how ignorrant people can be sometimes. On the other hand a lot of children and even some adults are scared of my trache scar and they overwhelm me with questions, which if I feel good I really don’t mind answering their questions, but they never know what CIDP is and if I don’t feel like explaining it I just make up a story like I was in a bad car accident or something of that nature.
It is really hard for people who have never experienced or been around someone who is chronically ill and doesn’t look it to even fathom the thought of what is really going on. I have learned to ignore people who are rude to me, they are not worth my time if they don’t if they don’t take the time to understand me.

Take Care,
Emily

Hi, Peggy.

A pretty good Web site on the subject is [url]http://www.butyoudontlooksick.com/[/url]. Be sure you read about the ‘spoon theory’–I’ve adapted it a bit and it helps explain to those who care what it’s like. And I’m thinking of asking them if they can make up a tee-shirt for CIDP.

On that same site is a list of cheeky retorts to those who say you look so well: [url]http://www.butyoudontlooksick.com/2006/08/sick_humor_answers_to_but_you.php#more[/url]. I especially like:

What does sick look like?

There’s a well person striving to escape this body !

How sweet of you to say that. I’ve been so tired, I haven’t bathed in three days. And I was sort of worried about going out in public looking like this. So thanks for the compliment. It’s really made my day.

I work hard to look this good.

Are you flirting with me?

Darn! I told Q this was the wrong host body!! I should go back to the mother ship.

Should I get a refund?

Really? That’s not what my psychiatrist told me.

Oh gosh I didn’t realise that you’re blind.

You should see the straight jacket they make me wear!

Really? Ok lets trade bodies for the day!

On a more mundane note, I have to have a walking stick to stay balanced, but even if I didn’t I’d take it with me anyway if for no other reason than to have something tangible that people can see.

Best wishes in the battle,

Deb
London

Peggy,
When you feel weak and tired a cane can help a lot especially when it comes to getting up or sitting down. It also gives people a hit that things might not be what they seem to be. Beside if they ask dumb questions you have something right at hand to hit them with 🙂 [just don’t hit them in the head, the echo can be deafening]

Hi Peggy;

I totally agree wit all them. It’s difficult to make understand people that we are sick, it’s something I have given up trying, the only important thing it’s how I feel. I just answer them, “oh I feel better but illness it’s still there and it’s a very strange one”, and no more explanations, anyway they are going to forget it in a few seconds, so why to make such an effort?;)

Of course my life has also changed, totally, and I’m still trying, to get use to it. I loved going to the beach, in fact I live near one of the best city beach, nowadays I just go from time to time because hot makes me feel worst. I used to walk everyday for one hour quite fast, well I just have some rest walk on weekend. But I’ve found many other beautiful things in this life.

Now I have a lot of rest and have time for myself, I’ve discovered this forum and I’ve had the opportunity to know all of you. As far as I feel “normal” I tried to live a “complete” life and when I feel tired, wake and with pain, well I just rest. It’ stupid to fight against something you can’t, and I think we need our energy for having the better life we can.

My family and my real friend understand perfectly what it’s going on, and I don’t have any problem saying “I’m sorry but I’m to weak or I need to sleep for a lot of hours”.

Take care and best wishes.

Lourdes

Hi,
Im not from Australia but we can email back and forth about CIDP. I suffer with it and I have for 5 months. Im 19 years old and im from Canada. I take IVIG and prednisone steroids for it. Would love to hear about your case.
Jenn
[email]Jennybob911@hotmail.com[/email]

I am not from Australia either, but will always be willing to write back and forth. You can send me a private message anytime. I don’t sleep well and can’t put in long days at work, so I will always be on here checking my inbox. I am new to this site, but you can’t make too many friends here. Everyone can help everyone else. That’s what I like about it.

Dear Paul!

Welcome to “us”! Since this is a forum and not a chatting site, the time difference doesn’t matter at all. When you sleep, people elsewhere around the globe are awake and answer your questions (hopefully), and then – “your” next morning, you go and open this page, and vóila: there you have your answer(s), or comment, or whatever – or perhaps nothing, who knows. I’m in a small country up north in Europe, and it suits me fine timewise.

You’ll have to state what you want others to discuss or help you with, and believe me, they will – these people here on the forum are such a caring bunch! Just ask, ask, ask – there is so much expertise here and everybody are ready to share it so easily!

Good luck!

Paul,
Welcome, the time difference should be much of a problem. The nice part about a forum is that you can put a question out there and answers can build on what has already been posted.

I was in Australia a long time ago. Now I’m living in Northwest Florida. I up at all hours of the night and I unusually check this site. I diagnosed with CIDP a little over a year ago. My version is the slow acting type. Things having been going downhill slowly for years. They finally figured out what was going on. IVIg has helped slow things down.

The others who posted are right, one nice thing about this forum is that you can get answers from others with CIDP from all over the world. The time zones don’t matter, as we can post at any hour. I had a very severe case of CIDP, have been ill for over 5 years now. Like you I went downhill very fast, so that for the first 6 weeks the neuros all though it was GBS.

Since IVIG, plasmapheresis, & even steroids didn’t work for me, I also ended up doing the chemotherapy route. My neuro used massive chemo threatments for 9 months to virtually wipe out my immune system & then allow it to reboot. The nice thing about that is that I have been stable & off of all treatments since 2003. The bad thing is that I was left with some residuals. Feel free to ask about anything here, it is a very active forum.

Hi, Paul, and welcome.

There are several groups in Australia. The UK Web site lists the following information:

Council of GBS/CIDP Support Groups of Australia. Tel: 03 9570 4251.
o GBS Association of New South Wales
o GBS Support Group of Tasmania
o IN Group of Victoria
o GBS Support Group of North Queensland
[email]placidroja@internetnorth.com.au[/email]

IN Group of Victoria’s Web site is [url]http://home.vicnet.net.au/~ingroup[/url]. The NSW’s site is [url]http://www.gbsnsw.org.au/web/Home/tabid/37/Default.aspx[/url].

Of course, with the size of Australia and the rarity of CIDP, the likelihood of finding anyone close is slim. As several others have mentioned, e-mail tends to be our lifeline. But you never know. And if you have Skype in Australia, you might be able to contact others easily and inexpensively.

Best wishes in the battle,

Deb
London

hello Paul I am across the ditch in NZ

Hello Paul,
I live in Adelaide and was diagnosed with CIDP in April. I am currently on a mothly dose of IVIG and this seems to have halted the progress of my condition but not much else. Physio seems to keep me mobile and look forward to getting some more relief with hydrotherapy. I too am glad to hear from anyone in Australia, especially South Australia.

Jenny

Hello Paul

Don’t worry about the time line…with CIDP, sleep comes and goes…I’m up
until 2 or 3 am in Florida, watching a poker game on tv that I don’t have the
slightest clue how to play…lol.

I’m currently using IVIG as my consistent source of stability…I used meds
such as prednisone and cellcept, but with disasterous results…keeping your
spirits up helps alot. Feel free to post anytime…we will answer you.

Miami Girl

Hi Paul

I took prednisone and cellcept from April 3 until the end of July. It did not
help me much. The cellcept gave me double vision. I kept telling my neuro
this, but he said that it takes months to get the right mg. to work. In the
meantime, I went into the ER three times, 2 weeks apart. A partner with
my neuro visited me and said I shouldn’t be on it. Cellcept is originally used
so that organ transplant patients don’t reject the organs. It is not a steroid
but it shuts the immune system down. I was on 2000mg per day.

So now, I’m back to the IVIG only. I’m sorry about your eye…that is scary.
Can you ask your neuro, if maybe, there is a correlation to the cellcept and
your vision? I know that is one of the contraindicators of cellcept with
vision problems.

Let me know how you are doing.

Miami Girl

Dear Paul,
Thanks for your reply. I am not having any other treatment other than IVIG monthly. I have a walking frame so have some mobility, but have to rely on others to take me out. I get very stiff especially in the ankles and knees, but I have a very good physio who works with me twice a week. I cannot have hydrotherapy yet as the wound from my nerve biopsy has not yet healed. With the help of friends I’m managing to keep positive, but I’m realising that I have to have great patience.
cheers Jenny.

Welcome to the site. Sorry that you have CIDP. If you describe what treatments you have had someone may be able to suggest alternatives. Also, if you let the group know where you live someone may be able to help you find the treatment you need. I sound like you have a good attitude :). Hang in there.

Hi Darren,

Welcome to the family. After I was diagnosed with CIDP in fall of 2005, I received a series of IVIG treatments for three months without seeing much improvement. The neurologist referred me to an oncologist to rule out any cancer but only minor indicators were found. After that, the neurologist recommended a round of Prednisone. This turned out to be a disaster. I lost nearly all control over my legs. Even with asistance, walking was extremely difficult. I fell numerous times. My fingers were also affected and I could barely type. All of this happened in a period of only two to three weeks.

Once off the Prednisone, I did improve somewhat. The doc put me back on IVIG. After the first round in 2006, I have returned to my previous level of disability. At least that was an improvement. I’m continuing on IVIG now with only minimal improvement in symptoms and hoping that the treatment is, at least, preventing the disease from progressing.

I need to add that according to what I learned, neither Prednisone nor IVIG are considered very effective for my variant of CIDP, antiMAG IgM Neuropathy. One alternative, chemotherapy, is not what I would want and Rituxan which may be most helpful is not approved for CIDP.

Hi Darren,

It is good to hear from you. I am sorry that your battle is so long. It is good that you continue to work for good results. Your comment ” I am 1 in a million” says it for us all. The incidence rate for CIDP is 1 or 2 per 100,000. and if the standard treatment protocols haven’t been successful on you, your variant of CIDP may indeed be one in a million.

Prednisone helped me strength-wise, and I have tried other courses of treatment. Nothing has reversed the damage the CIDP has caused in me. IVIG was not really significant either. Fortunately for me, my rate of progression is slow.

My initial losses were all sensory, but now I am experiencing more loss of strength and stamina. Pain is too often with me.

How are you dealing with your mobility?

Dick S

hi darren,

i am sorry you have struggled. i was being treated for MS for 6 years. i climbed from being in bed to wheelchair to walker to cain without the right treatment for CIDP. it was the most difficult, painfull experience of my life, i was even told once to go home and get my things in order!! i luckily had to change doctors and was told that i have CIDP not MS. I was numb, but after a couple weeks i got the postive attitude back that i had lost. I feel as i am being a pain when i see my neuro because i don’t shut-up with all the questions. but i will not stop. You need a good neuro that you can depend on and you keep asking questions and keep trying everything until you find what works best for you! keep the positive attitude, it is hard sometimes but i think that is our best medicine with this disease. and remember we are here for a reason on this forum. to help and to share and to learn. i have received so much help here and learned so much from this site, i want to thank you all!!!
good luck and keep in touch!!!!!

Hello and welcome to your new family where we understand because we feel what you feel. If you would tell us where you live, we might be able to find a member in your area, that in itself would help you, the possibility of meeting someone in person. If you have a good neurologist that you have confidence in, keep trying to find a treatment that will help you. Many times it’s just trying different things until you find what will work. If you could list all treatments that have been tried, our members might be able to suggest others.

Hi, Bear.

The only way I know of determining what kind of CIDP you have is by watching to see how it affects you. For several years mine was relapsing/remitting in the motor nerves and progressive in the sensory nerves. Some symptoms–the autonomic problems (which began in 1994) and the tingling and numbness (which began in 1999)–have slowly increased and never shown any improvement. But I would only have consistent motor problems when I relapsed (starting in 2000), which only happened when I managed to catch a virus (about once a year), and IVIg would throw me back into remission.

Now my neuro believes the CIDP is changing to progressive in both. In the past eighteen months I started having relapses every few weeks which automatically go into remission but which leave me a little worse each time, and IVIg no longer helps.

I’ve heard some people use the categories for MS (e.g., relapsing/remitting, primary progressive, secondary progressive) in discussing CIDP–not sure of complete correlation, but the terms may help in systemitizing the course of CIDP.

Keep fighting,

Deb

Mudbear,

Hello. Sounds like you need your IVIG more often. I get mine every 28 to 30 days. By doing this it prevents me from developing the motor symptoms, difficulty walking, climbing stairs and loss of balance. The sensory problems have also seemed to improve. I also take a immumsuppressant called CellCept 1000mg 2 times a day and Neurotin 3600mg a day for pain. This regime seems to be work very well. Good luck, it is a fine art to get the meds you require adjusted properly.

I was diagnosised last Nov. with CIDP.

Pam K

I know I can’t stop taking neurontin, if I am late an hour I can feel the pain in my feet. But I was on 3600 mg in the hospital, then tapered down to 2400 mg after I got home, then down to 1800 mg just a few years ago. My vision is also blurry, but I blame that on the steroids I took for 21 months (also had cataract surgery on both eyes.) If you are wondering whether you need as much just try to taper down little by little; if your pain increases you know you need it.

As far as what kind of CIDP you have I am guessing it is relapsing/remitting. If you have IVIG & get better this would tell you. With the progressive kind, you slowly continue to get worse, no matter what the treatments.
Pam

Mudbear,

You can learn a lot from this website, but don’t confuse what you read here as the total complete answer for all of your questions. Remember that CIDP affects us all a bit differently. The information we share here should help you learn, but it should also help you investigate CIDP for yourself. It should also help you understand that you need to have a great relationship with your neuro. Your neuro should be able to provide all of the answers to any of your questions. Hopefully you are asking questions. The more you show your neuro you care, the more he will take care of you. That really works.

The support I found here was, and is , so valuable for me. CIDP affected me quite a bit. It was scary, and challeging to deal with. So many great people here helped me deal with those issues, let me vent my frustrations, and still care enough to be there in times of need.

It is important that we pass along what we can, and share stories with each other. There aren’t that many of us. We need fellowship. Nobody deserves to face this alone.

Take care
Dick S

PS Hi Pam !!

mb,

[I]cidpusa.org [/I]

(cut and paste) has a section with a description of the different variants of CIDP.

Jerimy

Hi Terry, its very confusing. As far as I know they are not the same. CIDP is an auto-immune disease with antibodies attacking the myelin sheath around the nerves. Monoclonal gammopathy just means there is an unusually high amount of only one kind of antibodies, known by the M spike on blood tests. If there is no other cause it is called MGUS or Monoclonal Gammopathy of unknown Significance.

My diagnosis is CIDP with antiMAG IgM and minor MGUS after any malignancy like nonHodgkin’s Lymphoma etc. had been ruled out earlier.

(link deleted by administration)

Take care

Hi Terry, I have to question why your doctor does not feel the need to explain your diagnosis to you. None of us are dumb. Contrary to most of their popular beliefs, we can handle AND understand the information if they would only give it to us. You have a right to know. The Mayo Clinic website has an interesting article about Monoclonal gammopathy……….Take care, Vicki

Terry,

I also have CIDP with MGUS and am just as confused about it. At this point I haven’t had the MGUS turn out to be anything significant. Norb has a great link for it. Best of luck, contact me anytime if I can help.

Jerimy

Spell it out for them:
Chronic Inflamatory Demyalinizing Polyneuropathy. (My spelling. 😮 )They should look it up on the internet like I did with CIDP. But my condition only “took” because doctors respect Scripps. 🙂 Then they reconsider. Now I am not considered neurotic about my health. Three cheers for Scripps!!! :p (They still tell me there’s no help.) We know about the globulin, the plasmaphoresus, and the high dose of steroids.

Since I am 73 I chose to forego super high cost treatments. I have to use what’s left of what I have for old age care. :rolleyes:
Take care,
Patricia

Andrew,sorry to hear about mum, I am 65 with CIDP also. It is a very depressing illness and half the battle is learning how to accept the disabilties it causes. Initially it presents in a very similar way to GBS, but when symptoms progress for more than 8 weeks a diagnosis of CIDP becomes apparent. The treatment is Intra Venous Immuno Globulin (IVIG), later Plasma exchange may be used. High dose prednisone and azathioprine, are introduced and later the more powerful cytotoxic (anticancer) drugs.
No one can give a prognosis as to the future, some recover with minimal residual symtoms, some stay static, some deteriorate. I hope your mother shows some sign of recovery before long.
Most of us get the neuropathic pain you describe, it responds poorly to ordinary pain relievers, but Gabapentin or its new variant Pregabalin are very effective, but it needs to be in adequate dose; it last about 8 hours so if the pain is all day then the dose needs replaing evey 8 hours. DocDavid

Can Admin move this to the CIDP forum? Might be more takers there.

Thanks.

Deb

Hello Andrew,
Like Davidbod, I too am 65, and I was originally diagnosed with GBS, then told it was CIDP. This syndrome can happen to anyone, any age. If you will tell us where you are, we might be able to find a member who lives near you. Is your mom getting IVIG’s? This is what is usually tried first. You don’t always feel better and stronger, another very important reason for this treatment is that it can stop progressing. When the progression can be controlled, we can start healing, then we can get better. Is your mom taking anything like neuronton for the pain? If not, tell her doctor she needs this. Syndromes are one thing where we have to tell the doctor how we feel.

And don’t expect too much too soon, these are syndromes that are going to take alot of time to gain control of. And believe me, we develope our own noirmal and we learn to live good with what we have.

NEVER NEVER NEVER NEVER, give up hope.
Liz

Andrew, I can understand your frustration, as my frustration with the CIDP that my husband (age 66) has been diagnosed with is paramount at the moment, and he has only been in the hospital since the LP on 7/1/06. He has had intensitve PT and OT, and two five day rounds of IVIG…with no appreciable improvement. He was unable to walk when we entered the hospital and that condition has not improved, and now he has been in a hospital bed getting weaker through his trunk, and upper body. He cannot sit like he did before entering the hospital, has lots of balance problems. My point of frustration is this…because of his lack of improvement PT and his doctor want to discharge him from the hospital. I am 63 year of age and cannot care for him like the hospital, what are these people thinking? I have tried to be informative, the best way I know how…and apparently that is not the point at all. Besides his depression, which his doctor says he is on the max amount one can take of Cymbalta (60mg.) and Remeron (45mg.), he does not seem to be gaining anything. Today they started a trial of predneslone. Please, anybody, if this is a condition that both he and I can live with, we will adapt, but to be written off in my mind is highly unethical.

Andrew…I can understand your mother’s frustration. I was diagnosed at age 58 with CIDP. The lifestyle change that this caused was very depressing and I imagine many of us go through this. However, I can report that after three years of consistent treatments of IVIG, my life has returned pretty much to normal. I am symptom free and my doctor says I am healing. Yes, it is a long road but I am so thankful that, if I have to have a disorder, it is this one that has a treatment that actually works for many people. I hope your mother has a similar outcome. Good luck and keep in touch…Annie

TO: C.J.Loe: please don’t give up. Get a second opinion, or third opinion, or hospital transfer- whatever it takes. You don’t say where you are from, but there will be a higher level of authority somewhere. Also, your insurance may unfortunately be playing a role. Talk to social services. Good luck,
supersij

Andrew,
I’m with your mom all the way. I was almost 69 when this hit me. I too was paralized and could not walk. They found the right medicine for me when I went to a teaching hospital / rehab center. I too was hospitalized 5 months, and came out walking on a walker and quickly to a cane and then freely.Right now the most importand thing she must not do is to give up hope.It is extremely important that she keep a positive outlook. I sunk into the pits, but had hope all the way through. I am able to live a fairly normal life, driving , cooking, going out with friends, even a couple of driving trips. But it takes time. I am now 72 ( and staying in trying to keep cool which makes me feel better). Call upon the Lord, His love and faithfulness have no bounds.
Mary Ann

To C J Loe
The prednisone should help if given the right dosage. Please try to get to a teaching hospital A S A P . God be with you, please keep in touch with us.
Mary Ann

Thank you all for your encouragement. Our PCP has begun a protocol of one gram of preneslone per week and two IVIG treatments, one on Thursday and one on Monday. This is a trial for a week I am told, and next it will be plasma transfer in our great capital city of Little Rock, Arkansas. This protocol I am told is one that is used at the Mayo by the head neurologist there. This beats coming home by a long shot. I will keep posting as things go, but am now pretty optimistic! 😀

Liz,
Are you still on I V I G and Prednisone? I am particularly interestrd in the prednisone. The Neuro wants me off of it, and puts the fear of all sorts of things happening to me, but, I can’t get along without it. Last summer I barely made it through with 45 Mg / eod. But when the weather cooled, I got down to 35. but that was too far and I was done in again. Now I’ve increased it slowly to 43 mg. There is a woman at the hospital where I get I V I G that was on 100 mg Pred. for 24 years. and she does not have bone problems. but is now on something else. I was just wondering what your experience with it has been. Thanks.
Mary Ann

MaryAnn,

I am going on 3 years now on Prednisone (started at 80mg eod), when I go off I relapse. So they are keeping me on 5mg indefinetely at this point and have me taking Fosamax to help with bone density and also take Calcitrol. Also get a bone scan (Dexascan I think it’s called) yearly.

Jerimy

Jeremy,
Thanks for the response abbout the prednisone. I am on Actonel for the bones and extra calcium also. I think my neuro has just got me feeling insecure. Now with the heat comming, I’ve had to increase it. I just don’t care, I want to feel better. Thanks for the info.
Mary Ann

I did the prednisone off and on {mostly on} for ten years before I started having problems with my bones, broke a leg then my arm. Was doing caltrate 600+d once daily and Fosamax. Have been off the steriods except for 3-two day treatments for side effects since last July. Now doing the caltrate twice a day with the fosamax and my bone desensity tests are showing no more damage