April 18, 2011 at 3:56 pm

I have CIDP dx in Oct. 09. Have been only on IVIG since. I am going to a neuromuscular specialized neurologist. But he referred me to the MDA clinic in California in Sept. 2010; so they can manage my IVIG therapy. The MDA doctor examined me, took down history & physical & did another Nerve conduction/EMG test.The clinic really haven’t done anything different than my regular neurologist. In fact, the MDA doctor wanted to lower my IVIG from 0.4g/kg to 0.3 gm/kg. I was doing pretty good strength wise. I was getting 25 grams (am getting a little more than the 0.4 gms/kg) every 10 days. She wanted to decrease me to 16 gms (0.3gm/kg) every 10 days. I thought about it and called the clinic back stating that was too much of a drop in dosage!! They never called me back to discuss my lowered dosage & I don’t think they even called my regular neuro doctor to discuss my clinic visit. In the meantime, my regular neurologist had decided to change my IVIG to 25 gms every 2 weeks.
So, I’m thinking, why am I going to this MDA clinic for? They’re not doing anything different. I don’t think they have “specialized powers” compared to my regular MD. I am not impressed with them.