April 22, 2010 at 1:25 am

Sharon, According to the Dr’s autoimmune issue are not hereditary but you (or a group such as a family) can be predisposed to them. If they ever need proof of this they can look at my family. Of 7 women only 1 shows no signs of any autoimmune problems. We have 2 with lupus, 2 with Sjogren’s, 2 with Reynaulds, 1 with CIDP, and me as of now undiagnosed…I know those numbers do not add up- 2 of them have more than one issue. My sister was diagnosed by Dr Dyke at Mayo and she has been on IVIG now for about 4 years and is finally starting to show some slight improvement(tiny bit of reflexes have returned and very slight improvement in strength). She was told that she had the largest, most scarred nerves they had ever seen, not the kind of notoriety one would want! They also told her that she is one of the toughest cases they have as it progresses so slowly that the diseases has the time to thoroughly destroy the nerves so the only real hope for her is to stop the progression and not to expect to regain much if any of what she has lost. As a matter of fact she just saw him today and showed him my current EMG, he agreed to see me if I can get the referral from the army to Mayo. Thank god my family is all in Minnesota so if i can get the Army to sign off I will actually be able to go there as I will have a place to stay. I am following her course of progression exactly even down to the misdiagnosis. It is so frustrating being 90% sure that this can be stopped but I cant get anyone to listen so in the mean time I watch my energy level and strength decrease, i have random numb spots showing up and all I can do is hope that I have a good day tomorrow and that the spots will not stay numb forever!

I am grateful for anyone that takes the time to read my posts and respond as at this point any and all suggestions to help me get someone other than my pain management guy to listen are very welcome. I am really not trying to complain about my situation as I know there are many in much,much worse shape….I am very thankful that if what I have going on is CIDP that it progresses so slowly…at least it gives me time to attempt to get the correct diagnosis the first time(LOL)!!!