Woo hoo! I am so surprised. The doctor in Boston did a SFEMG on my face. On the right side, even though I told him my only symptoms were on the left side. This was a different sort of SFEMG--instead of having me tighten the muscles, he sent pulses of electricity to stimulate the nerves.

Well, I have hardly any facial symptoms, just a little pulling in my left eye. So I wasn't thrilled that he was going to test the right side of my face, when the SFEMGs on my legs and arms (where I do have symptoms!) came back only mildly abnormal. But he said the results are clear. Puh-LENT-y of jitter, evidently.

He said he has seen 800 MG patients in his career, and not one of them walks like I do. I can't find a YouTube video of anyone with my gait, either. My upper body swings from side to side as I walk. He has never seen that before. I am also sero-negative, and don't have the typical eye symptoms. Nevertheless, he found weakness in my arms and legs, and he said my eyes move in a way that he has only seen among myasthenics. So he is "very comfortable" with a clinical diagnosis of MG. And he is going to recommend Imuran for me.

Well, for a seronegative patient with such an atypical presentation, I feel like 14 months between onset and diagnosis is not so bad! And now I have some hope of a successful treatment. I am totally thrilled. I'm going to go throw a party or something.

Thanks for all your help and support here. You guys have been just terrific.

Abby

Abby, What an incredible relief, sort of. With all you have gone through, I am so "happy" for you that you found solid answers. I can only imagine how great you feel. It has a LOT to do with your tenacity and grit, you know. Give yourself a major pat on the back. Way to go to the doctor too!



Annie

Make sure they do the TPMT test BEFORE you start Imuran!!

Congrats Abby! I know how hard you worked to get a diagnosis. Good job hanging in there and speaking up for yourself too...I am so happy you can get the treatment you need and deserve.

debra

Abby so happy for you. It is good to know that there are docs out there that will go the extra mile, get creative, think outside the box to get a person diagnosed.

Annie59

Abby, It seems strange to congratulate a person who can say they have MG!!
I'm so glad you have an official diagnosis. All of your hard work has finally paid off!
Wishing you all the best as you begin your new treatment!

Rachel

Congrats on the diagnosis. It is a dance worthy moment, if you have it in you... There has to be a dance with side to side sway, right??

Fantastic !! And what a relief to have found the right doctor! Congrats!

congratulations, it sucks to be congratulating someone on being ill, but you battled for a diagnosis, so well done.

Onwards and upwards

Rach

Thanks, everyone. I know there are a lot of people here who have been fighting for a diagnosis for a long time. I thought I had come to the end of the line--that my doctor was just giving up--a few months ago.

I am thinking of the forum members who are still struggling to get diagnosed, and I hope you can find a way not to lose heart.

Abby

Abby, my feelings exactly....I'd started with a huge exacerbation of symptoms in '06 when I arrived in Tn after 5 trips back & forth from NJ with truck & trailer...after multitudinous specialists & testing, neuros were uncomfortable cuz I'm seronegative...but finally in Nov. the SFEMG in memphis proved positive...a relief, but still an incapacitating disease to deal with...neuro activated nerves in left ocular region, & I don't have bulbar signs that are evident, tho lately my eyes get so tired so quickly when I read or type...my limbs are severely affected & walking any distance is my downfall.....the changes in amplitude of the action potentials were evident even to me & the tech stated that the pictures were "beautiful & classical"..

I also hope that those members will find help with a neuro who has some empathy & will fight for them....

Please everyone, have a good holiday season & hang in there...

Dottie