Reply To: Diagnosis problems

August 12, 2014 at 1:19 am

bny806, you and I share many similarities. Last year my GP pushed me to have 3 vacinnations on the day (all were unnecessary) and triggered an autoimmune reaction in my neurological system. Weakness in legs, numbness everywhere, pain, shaky hands, lack of balance, weak jaw and face. I do not have much demyelination but have much axonal damage. I also have mild SFN but all symptoms are autonomic. I was checked for autoimmune Lambert Eaton because it, like CIDP, is often caused by vaccination or infection. A fact even less talked about than the more infamous CIDP – vacinnations link. I was of course thoroughly checked for cancer too and I am clean. My doctors are all very positive it was an autoimmune reaction to the vacinnations.

Have you tried DAP along with mestinon. It might help too. I am only on ivig. Every week. I respond well but I am far from normal. It is hard to live like a 24 year old being hooked up 2 days a week. If I stop I go down more. And because all my damages are axonal I can afford to stop the weekly infusion.