This has been a very interesting post of thoughts and experiences from fellow MG'ers. I have been living with MG and Stiff Person Syndrone for two years and am unable to take Mestinon. When I had my first episode of sever spasms a week or two after my thymetomy, they immedicately started me on Mestinon. Thank God my husband had stayed with me throughout the night because it wasn't long before my lungs stopped functioning and I started drowning in my own saliva. He was suctioning my mouth while the doctors were standing around not knowing what to do. I ended up in ICU on an inubator and about seven IV's for a week, almost had heart failure but survived. My neulogist specializes in ALS patients, he happened to be on call when I ended up in ICU and took over my treatment from there. I was at a teaching hospital so I had several different neulogist seeing me during my stay in hospital.

I have tried IVIG at least 5 times and one treatment of plasmaphreses with no response. So I'm left with living on drugs that in my thoughts simply dumb me down so that I don't get too upset or can go to a restaurant without becoming so stiff from the noise level that I can't walk.

Just before Christmas I realized that one of my prescriptions (valium) was going to run out so I tried to start the process to get his office to approve the renewal. In my opinion they were not very responsive to my request and finally I became upset about the situation while talking to one lady in his office. I apologized to her for my reaction but it is hard to get someone to understand that if I don't take my medicine the results can be devistating to me. I just sound like a drug addict which is what I have become. I know my neuro was on vacation during this time but because I was upset my husband sent him an email asking for his help. Of course his email returned a message that he was out of touch for a week.

Well, I had my three month appointment the second week of January and my neuro's attitude was quite cool. He pulled his chair close to me and for the first time said that there was nothing that he could do to make me better and cure me (something I'd already figured out). He also said that maybe I needed to find a professional to talk to because I'm angry, upset about my life change, etc. Well DUH! This is something that we'd talked about for two years but because I caused a fuss about my prescription during his vacation I feel that he is dismissing me as a patient.

Sorry for such a long post, but it has been such a frustrating experience for me and now my neuro is throwing up his hands and making me feel like I just need to go away because he has real sick patients with ALS and a chance to help them since he's been approved to use the stem cell treatment.

For the past two years he has been a cheerleader for me, always seems amazed that I survived the Mestinon drama. Not anymore.

Southern Bell