Oct 20, 2009
I saw my MS neuro today. I don't know why I was worried about this appointment because his nurse told me that he would be ok with me seeing another doctor at the MDA clinic for a neruromuscular eval. And, she was right. He said that the two academic hospital neruo clinics are not that egotistical that they want to impede a patient getting the best care possible and even collaborate on a patient like me when needed. He was happy I was getting my eval by this particular doctor as well. He was concerned about my diminishing lung function tests and wanted copies of what I brought to show him. He also wants an update from the MDA neuro and I will certainly give the permission to have the results sent to him. He said that the decreased lung funtions were not likely related to MS per se as I don't have a brainstem lesion. So, that was good to let him know what we were doing and his being on board with it.
He even sat with me to fill out the paperwork for a disability placard. I had a temp for 6 months but let it lapse in hopes that my mobility would get better. That was very nice of him.
We talked about the oral drug coming out and he mentioned that having a low lymphocyte seems to be one of the side effects. I told him about my chronic lypmphopenia and he said he would like to see my previous results. Said that I may not be a candidate for this drug if my lymph count is not good. He also wondered how I could have an autoimmune problem with a low count. Perplexing.
We aslo talked about the H1N1 flu vaccine. He said he wants his patients to wait 4-6 weeks so we can see if there are any significant side effects. He said he was around in the 70s when the vaccine caused neurological side effects. Whatever, I don't think I will have access to the vaccine in that period of time anyway, so waiting is not a big issue. He did say that the annual flu shot is not an issue and said to get it.
So, that is over and now all I have on my plate this week is the EMG/NCV. Yikes.