Did anyone experience motor symptoms?
March 19, 2009 at 9:48 am
There is a variant that has motor neoropathy, I forget the acronym, maybe mmn. About other body parts besides the limbs, yes, Kevin’s back was affected and his autonomic system.
Dawn Kevies mom
AnonymousMarch 20, 2009 at 1:19 pm
Ironically, most medical descriptions of CIDP are very similar to MMN [Multifocal Motor Neuropathies]. Especially in the descriptions of how the muscles are affected. Stranger still to me is that most folks I’ve encountered who have CIDP usually have more sensory effects than muscular.
That doesn’t mean that it’s one or the other? At least not at first. Testing, testing and more testing determines the distinctions I guess.
Two points to keep in mind?
First off, treatments for both are similar – the steroids, IVIG, or plasmapherisis.
Second, once ‘injured’? A person tends to use our bodies less. Whether due to the fatigue or pain it comes with the territory. Less use? The muscles work less well. Ask for a good physical therapy program if you can…and make sure your doctor includes training on how to continue many exercises at home! While I’ve been prescribed going to PT say, 3 times a week? I can’t endure that…so With a home program, I can go twice a week, do my thing at my own pace at home and get that much longer supervision as to whether I am doing it ‘right’.
Keep this all in mind, and don’t lose hope. Regain what you can the best that you can!
AnonymousApril 1, 2009 at 1:11 pm
I had it start with my eye–they determined I had “Horner’s Syndrome”, which I didn’t even know I had–it was found during a doctor’s examination.
But I was having problems with light sensitivity, (photophobia), and later bad migraines because of that.
He then sent me to a neuro to get to the root as to what was causing it, (it had to be a neuro problem).
Later, sensory problems, being unable to feel parts of my limbs on the left side, (I was first diagnosed as CIDP, Lewis-Sumner variant).
Then motor symptoms, (trouble walking, lost strength, falling, etc.). And somewhere in-between, tingling, sunburn-feeling, electric shock type of pain in my spine area, muscle twitching and spasms, etc.
Then it hit my autonomic system.
Still sliding downward, slowly, from there. But most can be treated with the IVIG and Plasmaphereses, and steroids. There are only about 5% with CIDP that those treatment protocols don’t work, (me being in that 5%).
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