Oct 25, 2009
I saw the neruomuscular doctor after the EMG/NCS last Thursday and am very disappointed with the evaluation. They were behind schedule and I wasx the last patinet, not getting out of there until after 6 pm and hope that fact didn't have anything to do with his hurried evaluation.
I was referred to this doctor by my pulmonologist who was concerned that there was a neuromuscular component to my breathing problems and significantly decreased lung functions over the past few years. We also talked about how my legs would get this extreme burning pain and weakness when I climb stair, hills, or otherwise exert myself more than just the normal walking, which I still have pain but to a much lesser degree.
So, he did a couple of tests looking for myethenia gravis and sojournes syndrome and guess what? They were negative. So, since they were negative and my emg was ok, borderline, but on the nomal side, then he was done. He said he thought these symptoms caused by MS. That was the only conclusion he could come up with. My MS neuro looked at my lung function results just 2 days earlier and was certain this wasn't caused by MS. I didn't bother to mention that to this doctor. I did tell him tell him that I asked other MS patients if they have the sudden burning pain in their legs and no one else was having that symptoms so how could he say this was MS related. His response was to suggest I take neurontin. I told him I was on neurontin. He forgot that we'd had that conversation already a week earlier.
I think this guy could have done more to try to help me, but for whatever reason he chose not to. I hate to think that once he heard about the MS diagnosis that he stopped there and hung his hat on that. I have no answers and throwing more drugs at the problem while not fully knowing the underlying cause to me seems unacceptable. It is too bad this guy took the lazy way out and I feel I am the one who will pay for it in the end.
It is always hard to walk away without answers. I know these symptoms are not due to MS and my MS neuro agrees. I'll go back to the lung doctor and see what she wants to do to figure this out since her neuromuscular referral didn't pan out. As far as the leg symtpoms, I guess I just have to learn to live with it like everything else.
However, despite this experience, I am hopeful that eventually figure this out somehow some way because I am not a person to give up easliy.