Stephanie, it's interesting that you saw a GBS expert, because he would know the difference between MG and CIDP, which is a chronic form of GBS.
I was in your position for a while. My doctor recommended a neurologist but I couldn't get an appointment for three months. Meanwhile I went to the ER during an especially weak time in the hopes that the resident neurologist could speed things up. It didn't work for me, but it might work for you. The reason it didn't help me is that my symptoms at the time were not typical of MG and no one so far had even suggested I might have MG. The neurologist at the hospital checked me for brain lesions, saw I wasn't in any immediate danger, tested my blood for whatever she could think of, and sent me home to wait for my neurologist appointment.
At one point I was already a patient of my current neurologist, and he was unable to diagnose me (I am seronegative and my SFEMG's weren't conclusive). He was planning to just keep seeing me every six months. I made an earlier appointment just to tell him: I'm getting worse. I can't live my normal life. We have to do something, and we have to do it immediately.
He responded very well to that. He sent me to another neurologist, in a different city, with a reputation for being able to diagnose difficult neuromuscular diseases, and that's how I got my diagnosis.
I don't know if a similar strategy would help you, but I'm telling you my story so you can consider your options. I'm so sorry you're in this position.
Abby
Quote:
Originally Posted by StephC
This is my first post sorry so long but I find it very hard to focus my thoughts and write (which is especially concerning as my occupation depends on that skill).
I had a very severe case of Guillain Barre Syndrome (GBS) in 1984. I was paralyzed from neck down for about 4 months (no plasmapherisis) and although I had problems over the years they were not disabling but the problems were getting very bad this year. I assumed my problems were related to the GBS so I did some research and found chief of the neurology department at USF in Tampa (about 250+ miles away from me) who was highly recommended for his knowledge of GBS. I saw him on July 19 and he told me he thought I had MG and sent me on my way saying someone would be in touch to schedule tests. Last week they sent me email they scheduled EMG for September 6, nearly 2 months away.
I have previously been diagnosed with Hashimoto's and have been on Synthroid and Cytomel since 1/2007.
My recent blood tests were negative for Acetycholine Receptor Binding/Blocking/Modulating antibodies, negative for Lyme but Epstein Barr AB positive > 5 and although on 7/5/12 ANA was negative, on 7/21/12 ANA IFA Screen was positive wth nucleolar pattern and 1:40 H titer????).
In the meantime I did lots of reading about MG and thankfully found this website. I now realize I have many symptons of MG some of which I didnt even realize were actual symptons.
I have always been very active and had a "suck it up" mentality but my condition is getting worse every single day and I am not able to really do anything at all now. I am a family lawyer with my own practice but I havent been able to work much in the last 3-4 weeks and if I cant work, I cant pay bills or my $1200.00 monthly health insurance premium. Today I had to cancel a deposition and a court hearing tomorrow (which is something I have never once done in 13 years of practicing).
I have tried reaching out to USF doctor but he was out of the office last week and although I sent him emails advising him how condition has worsened I havent heard from him yet today. I am disheartened by the casual way in which he mentioned he thought I had MG and then sent me on my way with followup so far out.
Of course, he did say if you are having trouble breathing go an emergency room. Saturday night my breathing was very difficult but after reading how most medical profesionals dont know/understand MG I was afraid to go to local emergency room. I learned when breathing gets difficult I can manage it if I lay down, dont talk and do nothing. That is not something I wish to do for the next 2 months though.
I have done some more research and found that the University of Miami Medical School (which is only about 30 miles away) has a very large neurology department.
It seems to me if this is something that can be diagnosed why am I laying around doing nothing when I could start getting treatment? I can understand dont treat until we know but then why not immediately do the tests? Keep in mind I have had worsening identifiable MG symptoms for a minimum of 6 months but the last 4-6 weeks I have been getting worse daily.
I am interested to know if anyone on this forum goes to UM dr. or can give me an opinion about what I should do now/today. Am I being unreasonable expecting some additional testing/treatment right away? Perhaps I should go to emergency room where UM neurologists are on staff?
Thanks in advance for your time and insight.
Stephanie
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