[pchristopherbell]

well on monday I will be flying to Mayo clinic in Florida to see one of their experts on MG. No one here is willing to say i have it but I think its all leaning that way. I do not have the eyelid issue, but I have had severe problems swallowing to the point of putting in a G tube. I had issues with it off and on for 10 years, lasting only few weeks at a time. Every doctor passed it off as all in my head and gave me xanax. Last august it turned on and didn't turn off. Right now I am at the point where when i first get up I can ear fairly decent and that gets to be less and less as the day goes by. I also suffer from terrible "I feel tired/fatigue", but a daily dose of prednison 5mg and tramadol 50mg every 4 hours prn really helps that, almost instantly. I was given mestinon to try 30mg BID x 3 days then 30mg TID. Funny thing is the pharmacy got mixed up and wrote on the lable to take 30ml BID instead of mg. I was at the worse in my swallowing so i could only take half of the mistake dose which was 15 ml BID so tech i was taking 120mg 3 times a day..........and I didnt have any side effects after a week and prior to that it was only my stomach seemed active. I failed the Electrical study they did in office but not enough for them to be comfortable saying I had it and my antibody test came back negative.

I know it sounds stupid but I really hope this is what i have, since I know i have something wrong I would prefer it to be this and not something worse or something they can not explain. I look forward to be being part of the community here if I get the diagnosis next week. So much to learn from the group here bout the practical side of day to day living.

P Christopher Bell, RN

[Stellatum]

Hi, Christopher. I'll be following your story with interest! I also failed the SFEMG but not badly enough to confirm the diagnosis, and I also tested negative for the antibodies. I also take a lot of Mestinon (60 mg every three hours) without side effects. My neurologist doesn't want to treat me with anything but Mestinon, since he doesn't think there's enough evidence I have MG. My only option at this point is to insist on a trip to Mayo.

My symptoms: weak side muscles so that it's sometimes hard to hold my upper body upright, noticeable but mild weakness in my arms, legs, and neck, occasionally achey eyes and occasional very mild swallowing trouble.

Anyway, I sure understand when you say you're hoping to be diagnosed with MG! We _all_ understand that. Everyone knows MG is horrible, but having the symptoms without a diagnosis (or treatment!) certainly is worse. So, I hope you get some answers. Please do post about your experience!

Abby

[Christy]

This might be of interest :

Concentric-needle single-fiber electromyography for the diagnosis of myasthenia gravis.
Benatar M, Hammad M, Doss-Riney H.
Department of Neurology, Emory University School of Medicine, 1365A Clifton Road NE, Atlanta, Georgia 30322, USA.
Abstract
The goal of this study was to estimate the accuracy of concentric-needle single-fiber electromyography (CN-SFEMG) for the diagnosis of myasthenia gravis (MG). A consecutive series of patients referred for CN-SFEMG was evaluated by an investigator blinded to the results of CN-SFEMG in order to determine the presence or absence of MG using an independent reference standard. Sensitivity, specificity, predictive values, and likelihood ratios were calculated. The study population included 51 patients (21 with MG). CN-SFEMG was normal in 34 patients (67%) and abnormal in 17 (33%). The sensitivity of CN-SFEMG for the diagnosis of MG was 0.67 and the specificity was 0.96. The positive likelihood ratio was 16.8 and the negative likelihood ratio was 0.34. The positive and negative predictive values were 0.93 and 0.76, respectively. These results indicate that CN-SFEMG showing abnormal jiggle is extremely useful for confirming the diagnosis of MG, but that CN-SFEMG showing normal jiggle has limited utility in excluding the diagnosis.

Also

This week from
Neurology® Podcast there is a podcast on MuSK antibodies of interest.


“…………………. In the next part of the podcast Dr. Beau Bruce interviews Dr. Donald Sanders about MuSK antibodies ………………………………..........”

It starts about ½ way into the Podcast.

www.aan.com/rss/?event=feed&channel=1


Hope this helps.
Christy,

[catie]

Christopher,
I wish you the best with your upcoming evaluation at Mayo. Not having a diagnosis, when clearly there is something going on is not good for the mind, body, and soul.

I traveled to Mayo earlier this year and was pleased with my evaluation. My antibody tests have been negative, as well as my SFEMG. However, my Tensilon test was positive. I was told that ocular MG has a lower rate of positive tests, including SFEMG. What a relief for me to hear that! I had totally been dismissed in the past by a neuroophthalmologist b/c of my neg SFEMG, altho he admitted that clinically it looked like MG.

Keep us posted.

Cate

[Tbarney]

I hadn't heard of tramadol being prescribed for MG, although I guess you have not been DXd yet. I thought tramadol was a pain killer. I tried it for bad headaches and it made me terribly sick.
Good luck at Mayo.