Myasthenia Gravis Support Group

Unfortunately, it sounds like MG. I am a 57 year old male who has been diagnosed with this disorder for three years. In the beginning, Mestinon worked great for me. Recently however, I seem to be regressing. I will be going on a new treatment, Imuran, shortly. More side effects but hopefully it will reverse this recent trend. Good luck with you diagnosis. MG is not the end of the world, you just have to adjust.

Ok, I am getting very frustrated. The blood test came back neg. Today is a very bad day health wise. no strength in arms or legs and my jaws feel like I have been eating non stop. I go back to the nuero tomorrow.

So sorry to hear about the test results (I think ? as that is supposed to be good news). I assume they will move on to the muscle response test. Are you on Mestinon and it's just not doing anything? (When my daughter's disease was rapidly progressing, it didn't seem to do much.) Must be so hard to have to be the one responsible for taking the steps you need to get a diagnosis when you have no energy. Did you talk to the AZ MG association guy, yet? He seemed well connected. Good luck. Sarah

Hi,

I have the same symptoms plus double vision. The double vision came a few months after the leg and arms weakness, dizziness, jaw fatigue. So they tested me for MS and I do not have it. Then, when the double vision came, they said MG. The blood test is negative and so I understand how frustrating this can be since all this started about 9 months ago and I still have no answer. Anyway, I am scheduled for a SFEMG at Duke tommorow and I hope they will have an answer for me after that. I had to wait in line 3 months for this test.
So, I know it is easier said than done but hang in there!
Laura

Just had to say that 3 months is ridiculous. And at such a well known medical facility. Hope they do a good job and you get an answer. Good luck. Sarah

i know the feeling! all tests were neg but 2 drs including neuroopthma agree it's mg. when i was in waiting room after 1st emg[done to eye area and told right then neg] i mety a woman who also was neg in all tests but 2 drs confirmed mg. it was later explained that in view of symptoms and positive response to mestinon-i have mg. i hope this helps and am sure many others were test neg but dr confirmed for mg.

Time for another update:
Tuesday evening I went to the ER with arm and jaw pain. They thought I was having a heart attack. They did every test under the sun
and a heart cath. everything was clear. they are now going to check and see if my hietle (sp) hernia has gotten bigger and is the cause. As far as MG is concerned they are still checking me out. The weakness seems to be getting more prevalent. The anti bodies test came back at .30. they say that was a negative result. The neurologist is sending me for Athena testing to test for MUSK antibodies. I am also having an MRI of the lower spine just for fun. Has any one out there had a MUSK anti bodies test? I have ordered some mastinon (sp) to see if it relieves my symptoms. The next step is Mayo Clinic. My insurance won't cover it all but at this point I am getting quite desperate. Do any of you have any other suggestions????

Have you had your glucose levels checked? I have MG and was put on steroids,,they have set me into drug induced diabetes. Mine isn't a typical dx but you should have yours checked because the dizziness could possibly be low blood sugar. My sister had that and she would become very weak then have dizzy spells. It became so bad she would just pass out. I hope that isn't your problem but I would have them check that if you haven't already. Your symptoms sound like MG but there are so many conditions and diseases that have those same symptoms. Like RA,,I'd have that checked too. There is a HUGE list of autoimmune diseases that can cause what you are experiencing. I'm sure there alot of conditions that are non autoimmune that do that too. I've had sleep studies and have been put on a bipap machine,,I have slight apnea and some serious RLS but the bipap is for my weak chest wall muscles. I have such difficulty breathing, I was lucky to get 2-3 hours a night. Now I can get about 6 successfully. Check out the sleep doctor too because sleep deprivation can cause alot of what you are going through. I don't mean to sound like a broken record. Best of luck and God bless! Keep us posted.

I just had a sleep study on Saturday so maybe that will tell me something. Let's hope.

i hope this week finds you feeling stronger! it takes such a long time to get the answers sometimes but i would rather get the real answer than a quick oh it is such and such and end up being treated for the wrong disease! so stay as strong as you can and look for other drs if you feel no rapport with the one you have[unless he/she is your area's expert]