ltr said:
Hi Conrad,
I hope your appointment today goes well. I am thinking of you. Let us know what the doc has to say. Leslie
It has been a terrible week. I was examined by one of the top Neurologist at the Cleveland Clinic, rated the 3rd best hospital and 5th best Neurology hospital in the US. Just walking from the 3rd floor parking, then on to two elevators, to the office, exhausted me. I can't drive anymore, so I had a parent drive me.
He just asked me a lot of questions about how I felt, like if I could drive anymore, if I could still take a shower, and so on. I told him that driving was out of the question, taking a shower was getting harder every week, I have to be careful not to cut myself when shaving, because my hands are so weak, that I was having trouble swallowing, that I have twitches in my feet, legs, shoulders, back and hands (both types of twitches, the ones that make your body move, and the ones where you can see it under the skin). He then had me stand up from a chair, without using my hands, which I was able to do, but it feels like I am lifting 300 pounds, and I only weight 139 pounds (I've lost a lot of muscle mass, and my weight when this all started 9 months ago was 160 pounds). My voice is very nasal sounding, and I showed him how hard it is for me to swallow (it sometimes is just hard to swallow, and when I do, my throat jerks my head back). Then he checked my reflexes, and they were abnormally high. He had me sit on the floor, and try and get up without using my hands. I wasn't able to. Then he had me do it again, by gripping my hands, and when he pulled me, I was able to get to my feet. He had me walk down the hallway, and he could see how slow and out of balance I am.
It felt like I was getting nowhere with him, so I told him that I don't know what I have, but I do know my body, and I won't ever be able to do any of the things I like to do, because this weakness is progressive. He said that he didn't feel that I had a NMD, but he did schedule an EMG for April 6th. He said he would do some blood work (here we go again, I feel like I am going to need a transfusion, with all the blood tests I've had). We talked about Stiff Person Syndrome, but he felt that I should have a blood level much higher than 10.3U/mL, like in the 1000's. But Leslie's research found a person with Stiff Person Syndrome that had a reading of 62U/mL, not over 1000U/mL. Can you believe that the first Neurologist was going to put me right into the hospital, for intravenous immunoglobulin treatments for 5 days, on the very day that the blood work came back?
I have a bad feeling about this doctor, almost like I am some kind of joke. You wonder why? When the doctor was out of the room, I looked at his computer screen, and it had information about me, from the first Neurologist, and when he came back, he had my blood results from him too. They must be friends, and doesn't that break the doctor/patient confidentiality?
One last thing. A few days after my appointment, I got a call from the Cleveland Clinic, and the secretary said that the EMG would take 2 hours. Has anyone ever had a EMG that took 2 hours? The two I have had so far only took about 15 to 20 minutes. I'll let you all know how my 3rd EMG turns out. Sorry for the rambling post.
Conrad