Reply To: Anti-MAG fatigue for newly diagnosed.

Sunny, I had the same. No diagnosis at the time but on disability already. Have been working with a immunologist for years now. My walks had to stop because my feet weren’t working and I was tripping all over. I thought it was just tight hips and did regular PT, which didn’t help. A couple years later (with multiple auto-immune and major cognitive involvement) I had an anti-MAG test come back positive.

Fast forward 2 years I finally saw a neurologist PA for MMN specifically and he didn’t think I had it, despite the high positive results, multiple times. I didn’t “present” like MMN. Eventually movement problems and pain got me curious about CIDP. The antibody test was negative, but the EMG was positive. So his diagnosis is Atypical CIDP.

It seems like a progression to me.

One thing the Neuro PA said was the nerves themselves would not heal, but I could regain functionality. Getting IVIG infusions for this (gratefully, due to Copay assistance).

I heard about “Neurology PT” that is specifically for neuro diseases including polyneuropathies. The Neurologist PA had not heard of it at all. That surprised me. He agreed to send a referral, so I’m researching practices now.

For pain, I started Gabapentein – and that comes from a Psychiatrist.

I feel like an orphan, having all these rare diseases. None of the established protocols for any of them fit, so I can’t see a “specialist” and have an answer. My experience with PCP’s has been pathetic at best. They’re supposed to coordinate all this, but they do things that go against what the specialists would do.

Since mine is Immune based, I cannot take immune suppressants or steroids. I’m under the category “Neuro-Immune”.

To answer the original question, I had a gut feeling too. Still do. It is that these were all symptoms of some underlying process that is broken, and not diagnoses in themselves. I still have that feeling and am beyond grateful I found an Immunologist who keeps digging. It is one of his research areas, even.

“I don’t know” can be the most beautiful answer from a doctor because that means they keep looking. Most are trained to have “the” answer in that 15 minute window called an office visit.

Lost,

Courtney