Question about CIDP

[QUOTE=MallardDrake]I was diagnosed and treated for GBS starting on 1/3/2010 and I am having a somewhat fast recovery, but wanted some information about CIDP. About 5 years ago, I began having numb toes on [U]both[/U] feet. Starting with the big toe and spreading to the top of my feet and to the adjacent toes over the next year. After blood tests, MRI, and visits to the neurologist I was told that the reason for the numbness could possibly be from a couple of bulging discs but not sure. I was told to live with it and come back if it got any worse. The symptoms never resolved and were easy to live with and caused me no discomfort. I am now wondering if this numbness 5 years ago that stayed with me is somehow related to my GBS? Any opinions?[/QUOTE]

[I]oh boy, yes, indeed opinions! I walk about with 5 squishy grapes attached to each foot. This is CIDP. If that’s all there was, that’d be nice, but not quite the case. However, those toes of yours are a dead give-away.[/I]

Has the numbness spread past the tops of your feet in five years? Is there any other numbness or tingling or pain? Do you have diabetes? (peripheral neuropathy) I too have back issues, two herniated discs and degenerative arthritis in the cocyx. I get numbness and tingling in the front of my thigh if I am doing too much. I do not have cidp my son does. So if you have not had any advancement of the incident 5 years ago that was steady leading up to this recent state of events, it is possible that it is the discs. In my simple minded opinion I would say if there was a gradual increase upward, perhaps this last attack was in fact cidp. It can take a while to progress, although 5 years at one juncture does seem odd, but this disease is odd!! Did youi get ivig or pp for the gbs? If so, the pain or numbness in your feet would have improved somewhat, to what level I do not know. Did it help anything else, what other things occured with this lates attack. If you did have treatment, and you are getting better, the ultimate test will be to see if there is once again a resurgance of symptoms. That would be indicative of cidp, in my small opinion. The ivig would essentially be the tool of the dx because you know it helped and now without it, the symptoms are back. Keep us posted!

If the conditioned appeared 5-years ago and did not progress further than you described, I would hesitate to describe it as CIDP. I think that situation and your current GBS are not related.

Your recall of When which problems started to happen are key to diagnosis. And as many here will agree, getting a diagnosis is far harder than it should be?
When you were tested for diabetes, did you do the 3, 5 or 7 hour test?
Those who have pre-diabetes will show up in the longer tests.
Also get copies of all your test results, if you can?, and go look up what they might ‘mean’ on the web. Not necessarily do they point in any clear directions? But such things as a full metabolic panel showing deficiencies in say, Vite B12 could be useful and an aspect you can help yourself with. Other blood tests? I always ask for and get a copy of the results. But I also get a copy of what tests were ordered! I’ve often found that not always are all the rite tests done. And, knowing the tests, I can look ’em up and see what the docs mite be looking for and understand what they see!
I once teased a doc about test results? Asking, DO you pay attention ONLY to the ASTERISKS? [*] on the test results? Or do you look at the ‘near problem’ #’s… Got him to thinking, as it should be.
Next? I must ask, what sort of spinal tests have you had? Yes, it could be one or the other? Or could be both? Depends on those slew of pesky test results. Even then Count your blessings? It’s not travelling FAST [as was my case-scary as heck to boot?] so you have time to keep on doing the testing merry-go-round. It takes that ride to get any answer IF there is an answer to be found. Please keep us all updated, as most of us have been thru this. But promise me? Don’t put off any more tests? Get answers or sort-of answers, WHY? because you’ll be mad sad and angry later if you don’t and things go worse. YOU know your body and what it is telling you…don’t ignore it’s signals. And, don’t take no from docs! That is what second opinions are for! Keep faith in yourself and hope.

It could be CIDP, it could be bulging discs (they have done that to me) it could be trapped peroneal nerves, it could be diabetes, it could be your shoes are too tight (my husband did that to himself), it could be that you cross your legs and press on the peroneal nerves…

It could be that having nerve damage at some point in our lives makes us more vulnerable to things like GBS and CIDP which is what I think happened to me. I had a similar start to yours though only one sided at first… the top of my foot went numb and my orthopedist noted what he thought was a cyst, turned out to be scar tissue, it was removed in surgery and the numbness immediately started progressing up my leg, about 3 months later I had surgery again to remove scar tissue that had formed where the peroneal nerve cuts past your knee… the numbness popped over to the other side and 4 months after that I was 90% paralyzed in the hospital with CIDP.

I just don’t think they know enough about all the factors that go into a person’s particular version of CIDP. There no longer seems to be a “text book” definition of CIDP, we defy the odds and descriptions given when our doctors plowed through medical school. My doctor has told me many times that some patients take years to progress from just their toes being numb to the tops of their feet… that it can start out one-sided, that in relapsing/remitting versions you can go years without any progression of symptoms only to have a relapse or a sudden worsening of symptoms. That’s what happened to me – from numb feet to numb all the way up to my thighs took about 4 months for me, then to go from there to in the hospital only able to move my left fingers took only 2 weeks. My doc says CIDP can have acute phases that are as severe as GBS, it’s just not as common.

I think its good that you are questioning the source of those numb toes, it’s important to know what is going on with your body and you are the best source of data collection for yourself. Keep asking questions and get your feet checked for shoe size. You’d be surprised how many adults don’t realize their feet keep growing and/or flatten out making it necessary to check your shoe size now and then. It might sound like one of those DUH, WHAT AN IDIOT things but honestly my feet have gone from size 7 to 8 to 9 back to 8 up to 9.5 and now back to 9 again from the time I was 20 until now 20-something years later.

Good luck with your search for answers. 🙂

If you haven’t already, you should/could have an EMG done, which will definitively determine whether or not it’s caused by a disc.

When I recently had my EMG performed, the doctor told me that they specifically test your upper legs and buttocks for this reason. If nerve involvement is detected in those areas, it’s likely a disc. He said the neuropathic damage, or damage from CIDP/GBS “rarely” involves the upper legs/buttocks.

As someone who also has a lot of disc problems, I find it unusual that it would be “symmetrical” as you describe. I’ve also been told by orthopedic surgeons that nerve damage from disc herniation almost always effects one side more than the other, as the disc, unless it’s REALLY bad, will bulge one way or the other, and not impinge on both branches. It can happen, but it’s rare. The other consideration would be that, in my case, my disc problems come and go with aggravation…they’re not typically constant, especially for five years.

But, that’s just my opinion.

Elmo

[I]MRI of the spine and EMG and go from there.

Too much input can be overwhelming. Start with these two tests. It’s rule out/rule in. A neurosurgeon if it’s the spine. A neurologist if it’s not.[/I]

[QUOTE=MallardDrake]Been there and done that. As I stated the Dr. would not give me a Dx. Only a wait and see if it gets any worse. I guess my question could be restated to ascertain if anyone has heard of a mild case of CIDP settling only in the feet and becomming chronic and stable to that area.:confused:[/QUOTE]

[I]I would have said that was possible. Would have. For me all seemed to be feet, deadened shins and a “burn” in quadriceps. Zaps from thumb and on up the arm and pinpricks of the feet seem to be handled by gabapentin.

Now I notice greatly lessened strength in arms and some discomfort.

I am, no doubt, in the slowly progressive camp.

But there are folks who stabilize at a given point. Some members here can fill you in on that. Most often, unless they correct me on this point, stabilized after a course of treatment and are not now on continuing treatment.

I’d be interested in responses as well. We read little from the folks who’ve stabilized.[/I]