posted
My mother has had CIDP for the past 25+ years. As I understand it, that sort of damage isn't necessarily repairable; however, it certainly hasn't ended her independence. While she can't go on those 20 mile hikes she still works, walks, and gardens. It is different for everyone, though, so you will just have to have faith and be patient.
There are a breadth of treatments available to treat CIDP, including acupuncture, IVIG, chemo, and steroids. To prevent further damage you will want some sort of treatment. If you have any specific questions PM me and I can direct them to my Mom and get back to you.
Posts: 36 | From Corvallis, OR | Registered: Jul 2008
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What testing was done to that to be diagnosed? Asking because my neuro. Has gotten progressivly worse over last yr and neuropsych testing show WAY abnormal changes in brain for IQ, cognative prosessing,etc.
Had emg on arms last yr. When neuro stuff started. Drs never did legs, was told would be abnormal since mri shows back trouble and explains neuropathy to legs
I am getting worried about neuro keeps getting worse.
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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I am trying to get to a lyme-friendly neurologist because CIDP fits me pretty much to a T (numbness in arms legs, difficulty grasping/holding, walking/odd gait, et al).
I met 2 people last weekend with CIDP along with their lyme diagnoses. One of whom was bedridden until starting IVIg and now can walk to the end of her street.
IVIg, I hear, does not provide as marked improvements for everyone.
My insurance requires that conventional treatment (Steriods) be used FIRST.
*for lyme px, I don't think so*
Steroids --- before IVIg is resorted to. and they use the term "Severe" case to be considered for Tx.
Px diagnosed with CVIDS also use IVIg. I don't know what else.
but with a CIDP diagnosis, IVIg is worth the try.
Note, my insurance will NOT cover IVIg for "Radiculoneuritis, Lyme".
So, if my neurological testing shows demyleinating polyneuropathy, I have to make certain that the official diagnosis doesn't contain "lyme" anywhere in it.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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This is anecdotal, as they would say. But quite obviously people here have CIDP.
When talking in a group of 4 people last week after a UOS screening, all 4 had neurolyme, CIDP, at least 2 thyroid disease(didn't ask other 2, but could h/b all 4), at least 2 with dystonia and dysautonomia (thusfar).
What's the likelihood, y'know?
Coincidental or not, given the history of lyme, if there is a way around the prednisone, worth your while to try to find it.
Once we have lyme we aren't ever allowed to donate blood to the Red Cross so special considerations should be given before Rxing steriods to anyone who has "had" it. But since chronic lyme doesn't exist, you know the story.........
RE: a lumbar puncture. Finding elevated proteins in the CSF is helpful in the diagnosis of CIDP. Although I remember (and my memory isn't great) reading that 30% of CIDP px show the elevation (could have been the reverse).
So, if you don't have elevated proteins, it doesn't mean that demyelination isn't going on. It's more like a LP supports the clinical findings and results of the EMG and nerve conduction velocity testing. It may depend on the individual neurologist though.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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