Reply To: Hello, I'm new here and looking for a little help

March 3, 2013 at 11:52 pm

Not “tests,” “treatments.” Will your soon-to-start IvIg be your first treatment for CIDP? When was it diagnosed?

Some of your symptoms are consistent with CIDP, but your neurologist must evaluate all of your symptoms and consider all the pissibilities. The spinal fluid test is an important indicator. Weakness from demyelination is typically bilaterally symmetric, and progressive from the lower extremities upward, but there can be variation from the typical pattern. Even if you do have CIDP, you can have symptoms which are unrelated to it. Only your doctors can sort it out.

My case of CIDP is considerably different, in being relatively acute (and severe) in presentation, and then going into remission and allowing recovery. I have had no signs of relapse two years out.

Standard treatments for CIDP are IvIg, steroids and other drugs, and plasma exchange. I have had all of these, and currently am treated only with an immunosuppresant drug, mycophenolate mofetil. I also take two supplements on my own (actually my daughter’s) initiative: alpha-lipoic acid and vitanib B12. The ALA is an antioxidant, and B12 is supposed to enhance nerve healing. My use of them is entirely speculative. I make no claims that they have made a difference, as it is impossible to determine.

Because your diagnosis is a slowly progressi e relapsing/remitting form, my experience does not really fit your case, and my treatments would not necessarily apply. Every case is different. IvIg did not do much for me, for example, and I discontinued its use early. For others, it is the key treatment.