Myasthenia Gravis

[bobbo37110]

I am trying to locate a neuro-muscular neurologist preferrably in the Nashville, TN area but willing to go somewhere else. I feel my sister is not getting the correct treatments she needs. She seems to keep going down hill.

[amm34]

I would try first going to a major hospital with a developed neuromuscular department and hope for a good doctor. I did that and saw 3 neuromuscular docs there, who all said the same thing, and I ultimately chose the one that was most compatible with my personality to treat me. They all were ready to jump in w/ immunosuppression and mestinon based on a clinical diagnosis and a few bedside tests on my first visit. I think that is where experience is really important- they know the disease and rely less on 'definitive tests.' If you are unsure, you can always contact the MGFA. I looked and it doesn't look like they have a chapter in TN, but if you contact them they may be able to direct you to a good doctor.

[bobbo37110]

Thanks so much (again). I really appreciate all of your assistance.

I have contacted MGFA and they said they did not have any listings. They just recommended seeing a neurologist within a University Medical Center. The largest such establishment here is Vanderbilt University Medical Center. She saw a neurology team while in ICU there, but not one particular doctor. I have been hesitant at contacting them because that is where my sister spent weeks without getting a positive diagnosis for MG although that is what they treated her for. However, I will begin with Vanderbilt and see what I can find.

Every journey begins with one small step!

[amm34]

Having spent time in hospitals as a med student, I can say that the ICU is a completely different focus from the perspective of many doctors. It is a team mentality, often in flux based on the attending, etc... the focus is really on stabilization. Diagnosis is obviously a goal, but the immediate is stabilizing her respiration. I think you may be surprised when you sit w/ a doctor 1-on-1. It can work to your advantage b/c they will have all the data already. Her response to plasmapheresis is suggestive of MG, but many disorders can be tx that way. While it seems likely she has MG, there are other potentials that need to be explored and explained. Having 1 doctor in charge of care can provide consistency and will be a source for explanations. Challenge the doctor to give you a differential and his plan to reach a diagnosis in a timely manner. Most importantly, see what his/her interests are and experience is. Personally, I feel the best doctors are ones that are actively involved research, etc... they tend to be more flexible with treatments and can see beyond the "gold standards," something very helpful for me (I have not really done much w/ gold standards until recently). Usually university hospitals are good for this. One other option is doing an internet consult b/t a doctor in TN and a specialist at another hospital. I know that Brigham and Women's in Boston offers internet consults and they have an awesome neuromuscular team and sub-specialists for tons of diff neuro conditions (check out their website). Good luck. Take care. You will get an answer just be persistent and be your own advocate!!!

[bobbo37110]

This is fantastic information. I did find two doctors at Vanderbilt via the internet that said their specialty was neuro-muscular with Myasthenia Gravis listed specifically.

I will look at the two sites you suggested and see if I can contact them via internet.

Again, thanks so much.