Status
Not open for further replies.
G

Guest

Guest
Hi,
I am new to this site but reading the posts has helped me feel like I am not alone.
My journey started in Aug 2009. I had generic symptoms, starting with swelling in my hands and fatigue. I have been to several specialists each time a "new" symptom would appear and every test would come back normal....started to feel like a hypochondriac, doctors can be that way.... I saw a neurologist in Feb 2010 and was diagnosed with chronic fatigue syndrome. with only a CT of the brain, no neuro testing, no blood work,ect.

In Oct of 2011 I began to have muscle cramps, mostly in my lower legs and single muscle twitches . My primary put me on Magnesium, took it for two months and it made everything worse so I stopped. I then made an appointment with USF Neurologist thinking they might be able to find something. Well, I am still waiting on my ACHR/MUSk test but I had a EMG and Single Fiber EMG, oh, guess what? I have a Neuro disease! They think its MG but they cannot be sure yet.

My question is does MG cause increasing muscle twitching and cramping? The twitching has moved to all parts of my body it seems to have taken a liking to the muscles around my eyes the last few days. Thank God, there has been no pain associated with any of my symptoms.

The doctor cannot/will not see me for 5 weeks. I feel that the last week or so my symptoms have continued to become worse and I am still working a physically demanding job, not very well I might add. I know I cannot get treatment until I am diagnosed, why does it seem to take so long even when they know there is a problem?
I have also tried and am still on Mestinon. I cut the dose back to 15mg every 3-4hrs because It made me very sleepy. I did not notice an improvement so I started taking 60mg again 3 days ago. I had to leave work today because I started having visual changes, changes in perception ( hard to describe) but I came home, took a nap. I am still feeling like my vision is not back to normal but it is better. Meds or disease? I think I will cut it back again. I was thinking I may not have been feeling better because I was taking a low dose. Still not feeling better with higher dose. Anyone else have visual changes with Mestinon? I notice visual changes are listed with side effects but its not clear what the visual changes are.

Thanks for letting me vent here. It seems when I speak to people around me, it makes them very uncomfortable to discuss my medical issues. It is nice to have a place to just let it all out...
 
G

Guest

Guest
Re: frustrated....

My neuro is the head neuro of myasthenia gravis he was even on mystery diagnosis. Single fiber emg is the way to go, but they still do the bloodwork. If your local neuros cannot decide if you have mg ask to be referred to unc chapel hill neurology.
 
Status
Not open for further replies.
Top