We’ve waited several months for an appointment to see the Neuromuscular Specialist at UAB, and I finally saw him Friday. We had spent the better part of a week going from doctor to doctor collecting every medical record we could to either FAX to them or bring with us. I had updated all my own medical history information that I keep on my computer and took that with me, too. All the paperwork made a stack over an inch high.
The doctor was very pleasant, but his English was difficult to understand, and at times I think he was having difficulty understanding me. He asked a lot of questions, did a very brief test of muscle strength, walking, and balance abilities. He gave me a prescription for Lyrica, which he said would help with the muscle weakness and fatigue. And he ordered an EMG. That’s the test where they put needles in your legs and measure the electrical signal between the needles to see if the muscles are working properly. I’ve had that test done twice – one was abnormal and one was normal – but that was some years ago. He also mentioned I might need a muscle biopsy.
And that was it.
We left feeling like nothing had been accomplished. I have to wait on them to mail me the appointment time for the EMG, so I don’t know how long it will be before that’s done. And the doctor’s office won’t decide when to see me again until the EMG has been analyzed, so that’s up in the air, too.
And now I’m taking the Lyrica, which is leaving me so looped that you would think I was drunk! I’ll give it a few more days to see if these initial side effects wear off, but there’s no way I can take it if this continues. It’s an anti-seizure medicine, just as my Primidone was, but I’m not having the Myoclonic jerks any more. I told the doctor that several times, but each time he would say that it would help with the weakness and fatigue.
I wish I could say I had confidence in him at this time, but I don’t right now. Very frustrating, as I’m sure he’s a top notch doctor – he wouldn’t be at UAB if he weren’t. It’s the language situation that makes me feel doubtful.
So I continue to walk slowly and awkwardly, and now I’m drunk to boot! LOL!! And disappointed, although I knew they would want to do more tests – they always do. It’s just been a long year of doctor visits and tests and more tests, and we’re no closer to finding out what’s going on with me than we were back in April.