Quote:
Originally Posted by pollyest
Hi everyone,
I am a 28y.o female currently undergoing investigations for MG. I have one last test to do tomorrow (single fibre EMG) which will confirm whether or not I have MG. All the other tests I'm done so far have been inconclusive. For example I had a positive reaction to the tensilon but I also responded to the placebo for some strange reason. If it comes back that I don't have MG then my neurologist wont do anything more for me. He seems to think waiting it out is the best thing for me and that my symptoms will just go away by themselves. I tend to disagree!
I thought that by sharing my symptoms with you all, someone might be able to shed some light on my situation. I know you're not drs but from my experiences over the past month drs DON'T have all the answers.
symptoms to date:
-eye spasms resulting in complete closure of my right eye fr almost 3 weeks. I could open each eye independently but together they'd only stay open for seconds. now they're open  but when i wake up in the morning one eye opens first and the other follows within minutes.
-foot and leg spasms for a day resulting in weakness in my legs (predominantly right). The more I use my legs the weaker they become. I start off walking fine but then my right leg stiffens and I'm unable to bend it as I walk. When I'm not walking my leg plants itself on the ground and I'm unable to lift it up.
-weakness in my shoulders. I cant lift them above my head. each time i try to raise them i can lift them less and less.When I rest them for a few seconds then try lifting them again the exact same thing happens -strength declines with each attempt to lift them.
-fingers stick together, unable to separate them on demand
does anyone have any idea about whether or not my symptoms sound like MG? |
My mg was confirmed by my family doctor by blood tests for the antibodies within a week and confirmed by second blood test after second week
There are many reasons I am at the stage I am at now mostlyto do with communication between the neuro and myself.
I believe I am in overdose at the moment on pred because the neuro applies what worked before with others and has not tested all the levels of dosage of pred on the way up.
Part of the reason it took six weeks for the benefits of the steroid pred to give advantages.
Unfortunately all the disadvantages of steroid pred started straight away.
Infections each week drugs then don't work until the infection clears.
insomnia as you more than likely are in overdose.
Mestinon is the only thing giving you benefit at these early stages .
If as I did you self dose oe self diagnose you can get significant weaker by overdose of mestinon
You get breathing difficulties.
You get muscle spasms
you get eye spasms.
you get leg cramps.
you get speech problems.
Other things I did before diagnosis
I drank too much b12 and other vitamins gone
I suffered extreme stress levels hidden from daughter
(burnt out adrenial gland)
I ate fast food.
The disorder is typified by poor strength on repeatability
of muscles.
It is an autoimmune disorder.
your body is attacking itself.
Generalisation everybody can be treated this way by some steroid.
Mestinon is used to help get the brain to nerve to muscle message thru.
This is an oversimplication.
initially this is what you need to understand.
I believe my neuro went to fast.