Do you mean CIDP?

Basically, CIDP is chronic & GBS is usually a 1 time illness. With GBS the active disease process ends in a few weeks to a month but there is a usually a long recovery time. With CIDP it takes longer for the disease to hit it’s peak & usually, with treatments, the process can be halted & healing can begin. Of course that’s not a rule & the disease process can vary by individual.

They both cause inflammation & demyelination.

GBS & CIDP are both dx’d by MRI of the brain & spine, EMG, & a spinal tap. A majority if CIDP’ers are dx’d with GBS 1st. Once the relapse then they get a dx of CIDP.

Kelly

Hi Kathi,
Some people do have a normal spinal. The ncv/emg will show slowed velocities and conduction blocks. Short explanation, how fast your nerve responds when it get jolted. The problem is those results can be with some other issues as well. For instance Charcott Marie Tooth which was one of our 2nd dx. until we had the spinal to rule it out. what the nerve biopsy will show is if there have been other demylienation episodes. It is called onion bulbing, each layer represents a new demylienation process, like peeling away the layers on an onion. It really isn’t used all that much any more because some people have difficulty healing from it, others do fine. I do know of a person here who tried all sorts of treatments for a cidp dx that were not working who had the ncv/emg results but no spinal result after a year or so, they did the nerve biopsy and it WAS NOT cidp per the biopsy. So if you have no other answers, it may be an option. Cheryl, angel2ndclass has recently had a skin biopsy, maybe you could pm her to see how it works.
Good luck, Dawn Kevies mom

Hi Kathi, I sent you a pm. Stay Positive, Stay Strong!:) Big Hugs!!

Cheryl,
I hope I was not out of place giving your name. 🙂
Dawn

sorry no info

Is that it overlaps with a hundred others! Doctors who are diligent as well as us patients persue answers…if they are there. At times they aren’t.
CIDP diagnostics from all I gather entail a long process of eliminating other things… there is not ultimate test to confirm it, rather the combination of blood work, spinal work-ups, nerve studies, MRI’s, CT’s-PLUS a savvy doc who knows it when he/she sees it.
OK films are films, hard to contest [unless going into pricey hi resolution tests that are rarely being approved for the ‘doing’ now], nerve conduction tests do have heaps of variables tho, which is why each new neuro wants to do ‘their own’. Spinal? Well, as said, it isn’t always conclusive per-se. And then the whole sural biopsy route is often suggested if all other tests aren’t postitive one way or the other. The sural biopsy is going out of favor fast tho, as it can cause damages due to possible infection…and it only proves that nerves are dead. Nothing more. [Look up ‘sural biopsy’ and ‘punch biopsy’, the two standard testing methods in use] Many insurance companies won’t pay for it except for extreme cases [the kind which have to be appealed].
Bloodwork? Well, there are reports that even these can be ‘inconclusive’ one time and the next ‘definite’…
Yes the human body is a complicated thing! The more I’ve learned, the more respect I have for it, and the more I marvel that I have survived! Count your blessings too, always keep things in perspective. Best always

Hi Kathi, The nerve biopsy and skin biopsy are totally different. One, like Dawn mentioned is the sural nerve-nerve biopsy-they look for the nerve appearence-bulb etc. The skin biopsy is alot simpler-its a punch biopsy taken only from the skin-only I think 1 mm deep. It is to see how the nerves in the skin-small fiber nerves-look-if they are plentiful and healthy looking. I saw a pic of two samples today-there really is a big difference and I am really glad I had it done. I won’t get my results back until next week. The procedure is simple-at least for me it was since I can’t feel much. It was more nerve racking for my nurse then it was for me:D I think it only took about 20 mins for the whole procedure if that. A couple injections of lido for comfort and a couple seconds later the bandaids went on and I was done. The samples are taken from the leg, at the hip and at the calf. This was done in my drs office, where a nerve biopsy I do believe is performed in a hospital setting. I’ve had absolutely no problems with either location, no bleeding, no infection and no pain. This type of procedure is mainly for those who have sensory involvement, as it won’t tell anything about the appearence of motor nerves, the onion bulb effect or anything like that.

Dawn, No Worries Hun!!:)

kathy,

I had a sural nerve biopsy. It was the final diagnostic tool for me. It showed demyelination and remyelination in both sensory and muscular aspects. Combined with the other test results, it gave me a final diagnosis.

In the beginning, none of my test results were way out of line. 10% above normal here and there, 15% here, 5% there. Just enough to keep looking, but no BIG RED FLAGS. Homeagain in on the right track, there is no single test for CIDP. Kind of process of elimination. I hope they are able to eliminate CIDP, I would certainly rather have something else.

I also agree that KNOWING is so much better that tests, tests, and more tests with no clarity. I went for five or six years without a diagnosis. Wondering what was happening to my body and how I could combat what I didn’t understand.

Keep after your neuro. Get your test results from him, and his office notes. read what he is saying and try to understand where he is going. Nothing beats knowledge, nothing.

Good luck

Dick S

sorry no info

Kathy,

Hopeful answers

1.) motor and sensory… Your nervous system supplies nerve signals to muscles so they contract when called upon to do so. CIDP sometimes affects the neuromuscular only. Fatigue, weakness, cramps, muscle soreness, sometimes cmplete muscle dysfunction. Your nervous system also supplies the information regarding touch etc, the sensory stuff. Sometimes CIDP affects mainly sensory nerves. Remember that each nerve pathway is its own transmision line there is no other signal on that line. Kind of like you have your very own road to work, nobody else gets on. Since the sensory stuff goes all the way to the fingers and toes, that nerve has greater exposure to the immune cells that destroy myelin, and therefore greater chance of degradation.
2.)MMN- Multi focal Motor Neuropathy, Ken is so much better able to explain this variant, because he has it. Multifocal means more than one place Motor means movement (muscles). I believe it is not necessarily symmetrical (same on both sides) but I am not sure.

3.)Cramps/Spasms/ and the like at night. I think all of us deal with these guys at night and during the day. It is just so commonplace that we have all found ways to deal with them. Do a search at the top of the CIDP forum for cramps and spasms and you can get some great advice on handling these
4.)I know exactly what you are talking about with your feet. If I stand still 5 minutes I am in BAD pain. I need to sit. After I rest, I can get back up for a little bit. If I overextend my standing time, I need the wheelchair for hours.

5.) I have had people ask me if I am all right or need help when I am just walking point to point.

6.) Ask your Dr. for a Handicap sticker/plate. If you can’t walk 200 ft, or need assistance, or need a wheelchair, etc. they will fill out the form. In NC it is $5.00 per placard, I got 2 one for each car.
7.) like Dawn Kevie’s Mom said, if you need it, get it. There is no need to punish yourself.

Good Luck

Hi Tom, I had GBS 25 years ago and the tingling has come and gone over the years. I had tingling and numbness in my fingers and toes (mostly in the toes) for 4 years straight after the GBS. Then it came and went. It has hit again in the last 2-3 years with a vengeance. The nerves are damaged and for some of us this will be a life long process. It can be annoying for me at times. If it gets really bad, that tells me I need to rest. I put my feet up for awhile, sometimes literally:D , and take a day to just veg. It seems to help a lot.

Glad to hear you are doing the gym. Just be careful to not overdo it. Remember it takes the nerves up to 5 years to repair and if you over tax them, it can cause some of what you are experiencing. Exercies is good…in moderation!

My hubby was dx in June 07. He was in the hospital 10 days, recieved plasma, and did physical therapy for about 2 weeks after he got out of the hospital. The drs were amazed at his recovery rate(although he never was completely paralized). He is a pro athlete and was back on the field within 2 months. In dec., he started having symptoms (tingling, numbness, weakness, achiness) again. We called the nuero and he suggested that he was just not fully recovered and needed to rest. Symptoms went away after about a month. The end of May he started with the same symptoms. The symptoms are finally on the way out. Both times he was physically working out to the point of exhaustion. At first we had thought maybe he was having a relapse, but after reading posts we figured it was probably all the extra workouts he was doing. Like you we had thought he was fully recovered and life could go on as before. Boy were we mistaken. I think you have to learn your limits. I can say that my hubby will definitely pay closer attention to his body now. It has only taken him two flare ups to get there. This forum has been very helpful.

Just a quick note to both of you….and not intended to burst your bubble, but as far as I am concerned there is no such thing as a full recovery. I was told I was fully healed but the reality is, even though life has gone on for me and I have lead an active and full life, there have always been little things lurking in the background that I can attribute to GBS. If I could go back and do anything over, it would be to rest more often. I would also have made sure I kept better records of any tests. I am having to go back to a neurologist now and I have no documents of where I was at when I left hospital. I have tried to get copies but the dr’s and hospital records are purged after 10 years so we have no way of knowing what my nerves and muscles were doing back then. I suggest you get and keep copies for yourself as you never know what the future will bring. I did not expect to have residuals starting 20-25 years later. The new thought around here is that we may have something similar to post polio syndrome.

Take care and rest!!! It is so important to long term well being!

You didn’t burst my bubble! that happened in June 07 when we were told he had gbs instead of ms or brain tumor as initially thought. Talk about rude awakening!

I hear you!