Connie, They could start by reading this.

http://www.alsa.org/patient/opinion.cfm

What this man needs is a specialist. I cannot believe he is still in ICU. Are they giving him any MG treatments, just in case?

It's almost like he needs BOTH an MG specialist and an ALS specialist. Then they should discuss it all between them. In some ALS patients, it isn't obvious right away if it's ALS. Some people progress more quickly and it's more obvious. There is not a definitive test for ALS, while there are more definitive ones for MG. Experts will be able to tell the difference.

I still think they should do plasmapheresis. If he gets better, it's MG. If not, it's ALS. That is usually what they do for someone with seronegative MG who has gotten worse and is still not more than clinically diagnosed (after having tried Mestinon). Mestinon can work in the short-term for ALS but not in the long-term.

It's doctoring like this that makes me so angry. If you don't know what to do, make a patient wait for MONTHS for help? Dear doctors: Get up off of your behinds, do what you have sworn to do and help this patient no matter what it takes!!!!

I hope he can get answers soon. Without answers, how can he get the appropriate treatment?!

Thanks for checking back on this man, Connie.

Annie