Some of this I just don’t understand!
AnonymousSeptember 17, 2006 at 12:22 am
The saga continues!
I have had new nerve testing from 2 different neuros over the last month. They also have done a ton of bloodwork even testing for Lyme (sp?) Disease.
Both have said the same thing. Everything is normal except that I do have a bunch of nerve damage, and I have no active demylination. They both have said that they think most likely I will not get any better due to the nerve damage and that this explains the continuing tinglning, numbness, and severe fatigue.
The doc in Seattle is now battling my insurance for several months of IVIG, after which he says he is ready to certify me totally disabled.
My question is, if there is no active demylination, and the symptoms are due to the permanent nerve damage, how will the IVIG help?
AnonymousSeptember 17, 2006 at 2:33 am
Hutch, you don’t seem to have a diagnosis, am I right that ‘no active demyelination’ means no demyelination, in which case you do not have a demyelinating neuropathy but one due to some other cause. Without a diagnosis I cannot suggest any specific treatment and IVIG is really for auto-immune disorders. Keep pressing the neurologist to establish if possible, a diagnosis. Bear in mind that a large proportion of people with proven neuropathy have no cause found so treatment becomes empirical ie; guessork. DocDavid
AnonymousSeptember 17, 2006 at 11:30 am
Sorry for the confusion, but I do have a diagnosis. It is CIDP. I do have elevated protein in my spinal fluid and all of the symptoms associated with CIDP. The confusion is the lack of current demylination. Apparently there is none.
I guess that is good because the CIDP is not progressing at this point. My symptoms have not gotton any better however, which the doctors seem to think is due to the permanent nerve damage.
If this is true, it doesn’t make much sense to me that the IVIG will help any at all. Am I wrong on this?
AnonymousSeptember 17, 2006 at 9:59 pm
These are only guesses, but they fit with my observations about the symptoms I experience. Still, your best course is to ask your neurologist what he means by “active demyelination”.
When I was first diagnosed, my NCV studies were classic for CIDP. A year later, the demyelination was significantly decreased, although I still had some. That is, I had more nerves myelinated than the previous year. In that sense, I did not have “active demyelination.” My guess is that this is what your neurologist meant.
However, I still have symptoms, responsive to treatment, but with relatively rapid relapse. So while overall I have more myelin than a year ago, the only reason that I do is that the treatments worked. Even if we ever get to the point where the NCV studies look normal, I doubt that I will ever be without some sort of treatment. What specifically about your NCV studies leads them to believe that your nerves are irreversibly damaged?
As another guess, just because you have damaged nerves, that does not mean that you won’t continue to have demyelination of the remaining decent nerves. I suspect the extra IVIg is to help keep your remaining decent nerves from getting further damaged. If I am right, then I hope the doctor is not planning on dropping the treatments once you are declared disabled.
As a final guess, I suspect NCV studies are not particularly subtle. The entire nerve bundle is stimulated, and the velocity down some relatively large fraction of the aggregate is measured. I could be wrong about this, but if a few individual nerves are demyelinated while the majority are not, then the NCV might look normal even with some demyelination. I don’t know if that would be enough to cause symptoms, though.
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