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.
Posted by MY3BOYS (Member # 17830) on :
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.
Posted by 22dreams (Member # 17846) on :
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.
Posted by lou (Member # 81) on :
I think lyme is one of the things that can cause this.
Posted by Neville (Member # 5890) on :
MY3BOYS,
A nerve conductivity test on my legs has been the
only test on which the neurologist has based the
diagnosis. All my bloodwork was normal. He has
suggested a lumbar puncture, but hasn't insisted
on it yet.
I know how you feel. Mine seems to be getting
worse too. Had hoped the ldn would stave it off,
but at least in the short-term is making
everything act up more. This is my 3rd week
trying it.
With something like this you are in the awful
position of not knowing if this is just Lyme,
precipitated by Lyme, or independent of Lyme.
And of course being very confused about what
treatment would be best. For instance, the first
thing they always want to try is prednisone.
Assuming I still have Lyme this could be a very
bad idea. Still waiting for word from my LLMD as
to his opinion on IVIG.
Thanks for the replies.
Posted by 22dreams (Member # 17846) on :
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.