Does anyone have sensory CIDP?

Hello Kazza!:)

Welcome to the forum!
There are many different kinds of symptoms from CIDP. It depends on what nerves are infected. Some people get more or less paralyzed, some have more sensory problems and then again others have both. I don’t know what kind of tests you’ve been through, but I hope the doctors have been thorough. If you are in more pain than you can tolerate, the drug Neurontin has truly been the lifesaver of many of us. There are also other drugs that you can combine with Neurontin to enhance the effect, or others like Lyrica if you for one reason or another, cannot tolerate Neurontin.

There are many, many people here on the forum that can help you with your problems, so feel free to ask any question you want. My main issue is nerve pain, so I know a lot about that, and I was first a diagnosed CIDP so I know a little about that too, but my correct and final diagnosis you will find underneath my signature at the bottom.

Looking forward to more questions from you, but in the meantime I will recommend you to take a look around the forum, and don’t forget “On the lighter side” because that’s where all the fun is!:D

Welcome to the forum

I was diagnosed with CIDP at the beginning of last year. I have numbness and weakness in my feet and lower legs. My hand are starting to go numb. IVIG has helped stop the numbness from getting worse. Neurontin has helped some with the pain.

CIDP seems to have many different presentations. I think you will find people here are willing to help answer your questions based on their experience.

Kazza,

My CIDP started out completely sensory. My progression is slow but steady. I started out with a numb spot on my two big toes in 1989. I thought it was my back, it always bad. But they diagnosed peripheral neuropathy. They couldn’t tell me which one, the presentation was not great enough. I plugged away for 5 years, had another EMG, and Nerve Conduction test. It showed progression, but not much. By 1999 the symptoms were definitely noticeable all the time, and affecting work, pain etc. I finally got “diagnosed” in early 2000.

By then I had the feeling that I had an extra pair of socks on. In the summer of 2000 I lost feeling in two toes each foot, plus my big toes. Spots on my legs were getting less sensitive to heat, cold, and touch. I was losing the ability to feel lighter pressure, but deep contact I could feel, just slower. By the end of 2001 I was noticing fatigue somewhat. I needed to rest sooner. By 2002 the continued plantar fascitis and tendon draw, caused quite a lot of foot pain. 2003 I had more deep numbness, and surface numbness was 95%complete up to my knees. I started experiencing distinct muscle loss and strength was down. I applied for SS disability in Jan 2005. I could not walk longer than 200 yards, pain walking is severe, numbness is deep throughout both feet and deep to the knees. I still feel collisions below the knees, but you can pull hair out of my legs and I will not feel it. I could not work an 8 hour day. If I did, I was bedridden the next. I got my power chair that winter I think. I use it for longer walks, the grocery store, shopping trips, etc.

I still stand to this day, although not longer that 20 minutes at a time. The symptoms are in my hands as well, although not so bad. My feet hurt constantly. I take methadone for pain. If I took enough for moderate relief, I would be too groggy to function, so I take as much as I can to stay lucid. It does not do as well for the pain. I fatigue much more quickly, and recover so, so slowly. I have lost strength. I am fortunate to have been strong at the outset. I had more muscle mass to lose.

Kazaa, don’t think ALL CIDP is like mine. I fact most are not. Most people deal with CIDP, manage themselves and their medications, and handle things. Some cases are more severe than others. I don’t want to minimize anyone else’s CIDP, because we all live through challenges. The key is to recognize what your challenges are, and hopefully stay beneath them, and keep yourself from jeopardy.

Take care, and keep on asking questions. I am sorry I rambled on a bit.

Dick S

Kazza,

I have a variant of CIDP, the same as Allaug who posted below. But in my case it only has been sensory. It all started in 2001 and has been going downhill ever since. I have no feeling in my feet at all and it is slowly progressing up my legs. My hands are also affected and getting worse. I’ve been receicing IVIG every 4-5 weeks since 2005. It is helping some. My last IVIG was January 3 – 5. Since I am in Thailand right now, I won’t be able to get another treatment for 4 more weeks until I get back. My neurologist calls this trip an experiment. 😀

I’ve been noticing that my hands are getting more numb to the point that I cannot feel what’s in my pockets. That worries my.

My husband was diagnosed over a year (June, 2009) ago with CIDP. Many of the symptoms quoted in this thread sound quite familiar to his case. Since then, he has been on IVIg therapy every 4 weeks. We changed doctors mid-year, and he had a 1-year follow-up EMG/NCS. The new doctor proclaimed the results were “very disappointing.” He put my husband on a 3-month, 3-week regimen, changed the IVIg brand, and stated that if the “turn-around” didn’t happen, he’d send us to Dr. Harati in Houston, Baylor Med. Center (we live in Austin). Before the end of the trial, we went to Houston. Out of the brusqueness (he really was rude) of the doctor, we did hear something I’ve been trying to sort out. He said my husband’s CIDP was mostly sensory; that the IVIg was working; but that IVIg doesn’t work on sensory CIDP. OK, that doesn’t make sense, does it? If he has sensory, how can the IVIg be “working” if it “doesn’t work on sensory.” Someone please clue me in.
Since there seems to be some dialogue concerning mainly sensory vs. motor or sensorynotor, has anyone received IVIg therapy, or other therapy, that has worked? Again, it has been over a year, and my husband has steadily declined on IVIg. My research, which continues day after day, leads me to question the ability to adequately diagnose CIDP, its variants, hereditary neuropathy, etc. It also forces me to question what is the therapy for that specific disease, which BTW doesn’t seem to be able to be diagnosed? I am one frustrated wife, and the answers don’t appear to be any which way forthcoming. I enter this forum to see if any of you has knowledge of, at least, the difference between straight CIDP and the more sensory type? And, if so, what has your treatment regimen been, for how long, and what have been the results. I’ll tell you this — steriods have been strongly discouraged by all the doctors we’ve seen, because of the side-effects (both long- and short-term).
I would greatly appreciate more knowledge, and if you know of that “greatest doctor/medical facility” you’d recommend, I’d be forever grateful. My quest has just begun, although I’ve been at it for what seems a lifetime. I’ll also let you know at the outset, these are just the beginning of my questions…..
thewife

Hi Kazza,

When I first developed CIDP, I had primarily sensory problems. Numbness, not able to feel heat, pain, feeling crawly things that aren’t there (eek!). It started in my feet and legs, then hands and arms, then face and then my torso.
At this point most of my body is numb. Somewhere in there I developed alot of motor problems too. My progression sounds very similar to what Dick S. has described. IVIG has helped me, with sensory and motor symptoms.

I understand what you mean about the fatigue. It is my most difficult symptom. I have found that resting when I need to is most important in managing my disease. In my experience, CIDP is not a disease you can push yourself through. You have to respect your limits.

Best wishes to you,
ladyg

[I]Sio good to read posts from our stalwarts, Dick S and Allaug.

I seem to be stable, though it’s almost like asking for trouble to say/post so. I take neurontin/gabapentin, though the side effects I deal with are having me take Imodium about 3/week.

I’m the same as far as squishy grape toes and thigh burn goes. The gabapentin has held at bay the pinpricks in the feet and the electrical shots in the hands.

Fatigue comes and goes, mostly comes.

As far as sensory CIDP goes, I am counting my blessings. Kazza, if you can reach a similar plateau, you will be one of the fortunate folks here.

P.S. I am 3 years out from my breast cancer TODAY!![/I] 🙂

Dear, thewife

I’ll briefly answer here some, and then PM you. Maybe we can start another sensory thread and talk about issues facing CIDPers who deal with CIDP primarily this way.

Please remember that I am not a Dr. and I have my opinion which is not backed by many years of medical school.

It does seem like motor loss returns after treatments, and sensory losses are slower to return, if at all. In my case, mt neuro told me to expect my sensory loss to be permanent. And so far it has been (15 years). I have better motor days and worse motor days, but sensory stuff seems to go in one direction. Why that is, I do not know.

On the plus side, the sensory loss seems to go slower than motor losses. Those CIDPers who experience motor loss seem to lose more and lose it faster, then recover some, then repeat the cycles. IVIG seems to interrupt this cycle and make the recovery last longer and shorten the severity of the attack.

So, even though CIDP is very rare, and you probably went through a rough time just getting a diagnosis, now you are finding out that there are different sub-types within the small disease itself, fun huh?

Hnag in there. There is life among this frustrating existence. We all find a way.
Dick S

I have both. Neurontin, Cymbalta, and Alpha Lipoic Acid has helped the most with the pain. However, it’s not helping with the irritated eye thing, the itching/tingling deep inside my ears, the dizziness if I move my eyes to fast up and down or sideways. The ALA took a couple months or more to start working. It is amazing. This sensory crap bothers me a lot and I don’t know what to do. Nobody knows much about this stuff- not even the experts.

I too have had CIDP two years this month. Mine started and continues almost entirely in my bladder. Actually I am convinced it effects the lining of my chess cavity and moves around. This is why it took many doctors to determine what I had as it didn’t fit the medical book explanation taught in school. I take IVIg every 28 days and Neurotin and Tramidal and manage OK and tannkfully seem to be steady. While I was trying to get a dianosis my doctor was honest and told me if I ask 10 doctors you will get 11opinions. I think he was right.

Since you live in Texas, you might want to check out “Texas Neurology” in Dallas. I have been seeing a neurologist there who is very thorough and down-to-earth—Dr. Alan Martin. I am from Arkansas and have traveled there for doctor appointments, IVIG, and MRIs. I was originally referred from a doctor who recommended him. I am pleased with him and the clinic. The patients in the IVIG clinic love him.

Is that re-growing of those nerves is very, very slow! Just over 1/4″ a month? But there are soo many of them? Who knows where they regrow to? Especially in relation to what damages have been done.
Muscular? Well, IVIG usually does IMMEDIATELY affect good responses. For sensory tho? It takes months to show a response. That doc saying it’s not gonna happen could be off? By a bit? Mine has been mostly sensory, and I was lucky enuf to respond to it by the second round of infusions immensely. BUT, I’d not been as long from onset as your dear Norb.
I guess this is why we all seem to see several neuros before we GET our diagnosis, THEN? Finally get any good treatments!
Further…many neuro’s underdose and thus fulfill their own expectations of ‘it’s not working’.. If I were you? I’d contact the NIH to find someone who specializes in this area of research to confirm that your current neuro is on track. As best as possible.
Certainly, it can’t hurt to ASK? Maybe it could be an assertive nudge for your neuro to be more ‘agressive’ interms of treatments.
Hugs to Norb and to Kazza! You need all the help you can get!
PS? I’d mostly had sensory until over a year ago. Then I had some total muscular ‘malfunctions’! With disastrous results. So? One and all? Be careful out there!