I am still in the very beginning stage (actually not officially dx yet)… been having ptosis and my Opthamologist referred me to ocuplastic surgeon for eval. He did a thorough preliminary exam and when I was telling him how the ptosis changes throughout course of day and feels heavy/aches and prevents me from
reading at times as I get headache trying to strain to focus - he told me he wanted to do the ice pack test on
My eye (initially implied very unlikely to be myasthenia gravis especially… read more
Thank you both. Leslie I’m looking into flying to Duke… could you share with me the drs. You see (always like to have names before I contact).
LT- my labs have been sero-negative, although they did recommend another lab lRP4. Both my Opthamologist and ocuplastic Opthamologist dx as ocular mg…. My Opthamologist wrote me prescriptions for both SF EMG and Chest CT to check thymus…..
I have been able to identify more symptoms, but finding a specialist for the single fiber EMG is beyond difficult.
I had 2 assessments completed that confirmed my MG diagnosis:
1) Blood test for acetylcholine receptor antibody test (80-90% of patients have thiis antibody)
2) Chest x/ray for Thymoma (thymus glands)
These two postive results were done in Canada where I live, so I’m not sure if they are available to you in the US. Good luck!
Thank you so much. Unfortunately there are only two hospitals in FL that perform single fiber EMG…. While both are about 2-3 hour drive, that is not as much of a concern for me. My issue is they don’t have any appointments before September. I’m really looking for both referral locations and specific physicians…. I’ve had the worst time getting any suggestions.
I chose to go to the leading teaching/research hospital nearby, which unfortunately means an hour 40 minute drive each way for me but has definitely been worth the drive I go to Duke University Hospital here in NC which is a top research hospital nationwide for MG and turned out to have had a dedicated MG clinic since 1980 so I'm Blessed! However any of your research hospitals or lead or larger hospitals in your area are a great place to turn to see whom has the most experience with MG That's not to say smaller local hospitals/ clinics and physicians don't Many people say the newer trained physicians within those tend to have and have been educated using the most current info about MG so if a local hospital or clinic for MG or local Neurology clinic that includes those physicians whom have been trained about MG too (Most are) then they r definitely worth a try! Of course I'm still rather a newbie to all this but that's been my experience nearby that I've met at Duke's MG Clinic and have read here and other places where people further along in this process have found help Be Blessed!
Any specific hospitals or teams anyone has utilized?