Puzzling question: Better here, worse there?
AnonymousJune 17, 2007 at 11:00 am
This has been puzzling me for some time and I wonder if any of you have had similar experiences. I’ve been on IVIG for almost two years now. This year it seems to slow down progression in my lower extremities. I can actually walk around the house short distances without losing my balance. Outside I still use a rollator. My feet are numb for sure but I don’t feel anything.
But at the same time the numbness in my hands has been getting worse at an frightening rate for about a year. Now I constantly have the feeling of wearing tight leather gloves. I can hardly manage to screw the cap back on a tube with medicine, I no longer can feel what’s in my pockets, my ring finger and especially the little finger have taken on a life of their own. They stick up seperately and when I reach into my pocket, they stay out without me knowing it right away. When I grab the handle of the rollator the little finger isn’t on it with the rest of them. (these two fingers are on separate nerve circuits from the other three)
My question: Is it possible for CIDP to progress at significantly different rates in the lower extremities as compared to the upper ones.
AnonymousJune 18, 2007 at 2:06 am
other than to suggest to your docs get and check your auto-i blood #s again?
Maybe after all the other stuff you’ve had happen, some extra inflammations is rearing it’s ugly head.. Yes! I realize you are not jumping with excitement about a possible other spinal…but raise the issue to your docs… USUALLY
IVIG should stabilize things for quite a while….unless something else changes in your systems.
I recently had both the metabolic and chemical CBP [complete metabolic panel and complete blood panels with some extras to boot…I expect more for other issues in the future…One thing to keep in mind is that the thyroid/endocrine systems are put to a LOT of work with auto-i issues…tho it’s mostly a womens’ issue, it is a worse issue in men[cause nobody thinks of it]. I would suggest you get to a competent endocrinologist, if you haven’t yet…just to see how that all is chugging along. If it’s ‘chugging’ Great! If not, good endos, simply are straight forward and practical…Sputters in this system are either easily [and usually] treated thru meds, or sometimes surgery [THAT is another kettle of whatever entirely tho]
Really, sounds like time for more tests, if the whole progression thing is getting ‘agressive’! That is only because this ounce of prevention could avoid lots of un-necessary cures?
Not to mention the whole concept of ‘progression’ is one that put’s the fear of FEAR in any CIDP’er!
Super good thoughts for tests and resolutions – with a couple of pain free/fear free segments inbetween.
AnonymousJune 18, 2007 at 6:46 am
I have CIDP and my lower legs and face seemed to have been the worst affected. Though, the last few months my hands have started to burn (like my feet have for years) and my fingers are starting to feel numbish and stiff – again just like my lower legs. I have been having trouble lately trying to find things in my handbag, eg: feeling for my keys, etc. I have actually bought a shallow handbag so I can ”see” clearly into it – without feeling for things like I have always done in the past. I know you probably won’t have this problem but I can understand what you are describing – my sense of touch seems to be going. My daughter is quite happy though, she has just gained my old handbag collection!
Anyway Norb, in my case I think it could be starting in my hands after years of affecting my lower legs – I’m going to tell my Neuro next time I see him.
AnonymousJune 18, 2007 at 12:14 pm
Thanks for all your answers and suggestions. The day after tomorrow I am going to see a new neuro here locally. I will definitely bring up the issue.
In the meantime, I’ve come up with my own theory. My immune system has been attacking and destroying the myelin in my feet and partially the legs for many years. There probably isn’t much myelin left in the feet since they are 100% numb. Now it is “looking” for new targets, my hands. It would make sense that I now notice the most changes there. And the feet might actually get a little better for a while after each IVIG.
[B]Kazza[/B], no, I don’t have a handbag 😀 but I am thinking about getting one of those pouches you can strap around the waist. I can look at what’s inside and don’t have to fiddle with getting my wallet out of the back pocket or – worse yet – trying to put it back in.
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