AnonymousDecember 4, 2009 at 12:02 am
[FONT=”Comic Sans MS”]I have been diagnosed with CIDP and my nuerologist has led me to believe that my mylan sheath will not grow back or heal. He has reccomended that I go to a Balance Center for therapy. Have any of you ever been to a Balance Center? Was it successful? I’m on IVIG therapy six hours one day a month. Thanks for your input.[/FONT]
AnonymousDecember 4, 2009 at 12:37 am
for the last few years I have had many bouts of BPPV or possitional vertigo. my doctor sent me to a balance center. they taught me “epleys maneuver” and other balencing exercises. I dont know how a balance center would help CIDP but anything is worth a try I guess. Is it the one on pecos and wigwam?
AnonymousDecember 4, 2009 at 2:33 am
I have CIDP and attended balances classes a couple of years ago. It was at a day rehabilitation hospital and I did ‘one on one sessions’ with a physio’ once a week for about two months.
I found those classes really helpful. Before those classes it was difficult to walk without looking constantly at the ground – I couldn’t walk if I looked straight ahead (couldn’t see the ground) as I felt I would fall over. We did all sorts of balance exercises – though importantly, ones that didn’t exacerbate my weakness.
So, they certainly helped me. 🙂
AnonymousDecember 4, 2009 at 2:28 pm
I have been through balance sessions here in SLC. I highly recommend IHC’s Center for Balance and Hearing. I had to use them when I was diagnosed with Meniere’s Disease several years ago. Vertigo and dizziness can effect SO many aspects of life and make you miserable if not addressed.
AnonymousDecember 4, 2009 at 7:27 pm
Myelin does grow back. Schwann cells repair the myelin…slowly, but it does get repaired.
It’s the axons that do not get repaired.
The theory with CIDP is that there are bad antibodies that cause inflammation on the myelin. That inflammation basically eats through the myelin, interrupting the signal from the nerve to the brain & then destroys the nerve. Once the nerve is destroyed the inflammation starts damaging the axons. There is not yet a way to repair damaged axons but scientists are making progress every day.
Hope that helps,
AnonymousDecember 4, 2009 at 9:50 pm
Emily’s mom is spot on. Schwann cells will regrow myelin.
Balance therapy can be helpful, it depends on how much difficulty you have. Anything you can learn to help assist your mobility may not help too much right now, but later on it might be more applicable.
AnonymousDecember 5, 2009 at 12:05 am
[FONT=”Comic Sans MS”]Thanks to everyone for all of the wonderful and helpful input. Kelly, how do you know if the inflamation has damaged the axons to the point of no repair? Would that be thru an EMG test or some other test? Thank you for your patience, I have so much to learn. [/FONT]
AnonymousDecember 5, 2009 at 12:55 am
I’m not Kelly, but am responding to your question about axon damage. My husband who has CIDP has axonal damage which is manifested by atrophy of the thenar plane of his hand and atrophy of his forearm–he has no strength or grip in that hand and the arm is weak as well. His hand and arm appear to be shrunken. There is no repairing that damage according to his neuro. He was misdiagnosed and was without any treatment for two years resulting in irreversible damage.
AnonymousDecember 5, 2009 at 1:54 am
I’m sorry your husband has had such unfortunate medical attention, it is stories like yours that make me realize that I really am one of the lucky ones with this disease (as far as a diagnosis). It took me a while to realized something serious was going on with me. I diagnosed myself on the internet. I got as far as nuropathy and learned that I needed to see a neurologist. After many tests the neurologist diagnosed this disease with in a month. I have probably had it for about 5 years (I can say that now that I know what to look for and I know the symptoms). The symptoms came on very slowly and with months, weeks and many days in between the tingling, burning,numbing and tripping. I am not one to jump at a chance to go to the doctor. Long story short I was diagnosed in July and I have so much to learn. Thank you for sharing your story, I’m grasping all the information I can get my hands on.
AnonymousDecember 5, 2009 at 7:52 am
The dr would be able to tell if the axons were damaged by an EMG. Also, as Laurel mentioned with her husband, if the axons are damaged then you lose the ability to use that area. There is no feeling.
If you are trying to learn as much as possible then I highly recommend that you start Google’ing. When you have a question just type it in & read as much as you can.
I Googled “Axonal loss & CIDP” and got the following link, if you want to research it:
AnonymousDecember 5, 2009 at 8:32 pm
When we have these autoimmune ‘attacks’ or ‘cascades’? Nerves, miles of teeny tiny ones, die in seconds! When nerves regrow? It’s slow, about a ‘1/2inch’ a month. So SLOW is the word! When new nerves grow? So little is known about ‘healing’ that it’s frightening. Once some nerves are stong enough or connected enough? They send out zings, just as if there are nerves dying, but this time they need ‘programming’!
Physical therapy if not overdone? Is a way that has helped me immensly. But, it’s also got to be tied into exercises you can do at home to maintain some strength and get and keep muscle tone. Surprisingly, during my last round of PT? [Not this one yet tho] I found that my brain and my muscles were ‘remembering’ how to do things RIGHT! They remember, they just need additional guidance. Given a diagnosis of CIDP? You might have ‘limits’ as to the number of PT sessions you can have-insurance wise. So, go to each PT center offering services [or have a friend or family do it] and ‘interview’ them over the phone as to IF they are familiar with GBS/CIDP issues and how their program might be best. You have to make every session count! Work hard! Nap afterwards and ask/demand a home program. Better yet when you ask the neuro for PT orders? Be sure to ask HIM for that ‘home program’. It’s surprising how much you can do w/simple exercises…safely at home that can build strength and stamina and get you going a bit better than before!
Keep faith and hope always.
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