After waiting FOUR long MONTHS for my referral to a new neurologist, I finally got a call yesterday afternoon, telling me I had an appointment TODAY at 11 a.m. I was thrilled to finally get the referral---but on such short notice? Luckily, I was off today (Phew!) and able to go in.
The Spruce Multispecialty Group was the name of the office. I believe I counted six doctors in the partnership, but I don't know what other specialties they shared besides neurology for my new doc.
The Spruce Multispecialty Group was the name of the office. I believe I counted six doctors in the partnership, but I don't know what other specialties they shared besides neurology for my new doc.
It was crazy inside. You can see the line of people waiting to be helped. There was always someone coming or going. Fortunately I only had to wait about 15 minutes (after spending 20 filling out forms) before I was seen.
My doctor, Dr. Birnbaum (I stole this photo from online. Shhh!), was interesting. He was one of those people who are very cerebral and doesn't have a great bedside manner or people skills. He took copious notes, looked through the labs and notes from my primary doctor. But he also spent time with me and actually listened to me. But I think (hope) he figured my problem out in just that one visit. He literally muttered, "This looks like a case of C.I.D.P. Next patient, please."
C.I.D.P. stands for Chronic Inflammatory Demyelinating Polyneuropathy. Myelin is the thing that the electrical impulses in nerve cells move up and down on. Demyelinating is a removal of the myelin, which hinders the communication between the brain and whatever it is controlling (in my case, my legs). This is kind of what happens (on a more extreme scale) with Multiple Sclerosis, Guillain-Barre Syndrome and/or Transverse Myelitis. Polyneuropathy is the damaging or breaking down of many (poly) nerves outside of the brain, hindering/halting function.
He asked about nerve conduction testing and I told him I had had it done twice---both times with no unusual findings. He then asked if I had ever had a needle EMG (ElectroMyoGraph). No, I haven't. He wants to try that. It is a test in which they actually stick needles into my muscles to monitor how the electrical activity reacts within them...sort of like internal electrodes. It will be like getting a lot of SHOTS all over my legs. OUCH!
If the tests come out as he thinks they will, I'll have to undergo IVIG (Intravenous Immunoglobulin) treatment. IVIG is plasma taken from healthy donors. We use it all of the time at work for patients with Guillain-Barre Syndrome or Transverse Myelitis. In fact, just this morning in the shower, I was hoping he'd figure me out. I am pretty sure it some weird autoimmune thing and I was wondering if I could just get a few treatments of IVIG or have plasmapheresis (similar to IVIG, but your blood plasma is removed and replaced with donor plasma---we also do this at work often).
It's also weird that this really started kicking in to gear while I was in nursing school, when Guillain-Barre Syndrome was the bizarre-O thing that most scared me. I had never heard of it before---and now I've seen several cases of it since becoming a nurse. Guillain-Barre starts off at the feet and quickly rises up the legs and into the body, paralyzing you as it goes. If it is not caught and treated right away, it could cause paralysis of your diaphragm and you'd suffocate. It eventually recedes---but it's a slow process and the victims do not always get full use of their muscles again. Transverse Myelitis is similar, except it strikes the along the spinal cord at some random area. You could have use of your legs but not your arms. It's crazy and scary...and it just hits at random. No one knows what causes these things.
Thank goodness my problem is (hopefully) C.I.D.P. and NOT Guillain-Barre or Transverse Myelitis (or Multiple Sclerosis! Jinkies--that's scary) as I'd probably be dead by now. I have trouble but I can still function.
Anyway, they called to schedule the needle EMG. It is scheduled September 20---two months from now. I'm not thrilled about that---but what can I do? That was the earliest they could see me for this (and better than the four months I had to wait for my initial appointment). I'd rather have this whole mess over with---but all good things come to those who wait. Just a little longer to go....
I'll keep you posted.
CHEERS!
The next leg update is HERE.
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...Mikey