Quote:
Originally Posted by AnnieB3
Hi, Dechi! I believe you are posting exactly where you should! 
ME/CFS does not cause fatigable muscle weakness. Only MG, LEMS, and a CMS do (which are all neuromuscular junction disorders).
From what you are saying, you need to see a neurologist immediately. If you can't get in to see one, a primary doctor can run the Acetylcholine Antibody Tests (binding and modulating antibodies). AND do a clinical exam to determine how weak you are and if your muscles are fatigable.
2016 EMGs are not 2018 EMGS!!! Things change over time, and you obviously need new tests done.
What you are describing by your eyes being shut more is ptosis/droopy eyelids! And the vision issues could very well be double vision. A neuro-ophthalmologist can figure that out. Let doctors figure out what is going on! Don't say you don't have something if you don't know for sure.
If you hold your pointer finger out about a foot in front of your eyes and then bring the finger to your face and back again, how many fingers do you see? One or two? If two, then close one eye and see if the double vision (creating those two fingers out of one) goes away. That's a typical sign of MG double vision.
If you are so bad that your muscles are fatiguing that quickly, you really need to be in an emergency room. Do you mind saying where you live? Someone might be able to point you in the direction of a good neuro/MG expert.
Get yourself some help immediately. I truly suggest a hospital's ER. If you have MG, you can become so bad that you have trouble breathing. Don't be scared about that, just know that you shouldn't wait until you are that bad off.
I don't know if you have MG, but, in your current condition, I do know that you need help NOW! Please let us know how you are doing.
Annie |
Thank you for replying Annie. I know you’re trying to help but you’re really scaring me ! I have asked other ME patients and muscle weakness/fatigue seems to be a common symptom. I thought me ME was just getting worse, which is why I didn’t think too much of it until recently.
I have been diagnosed by Dr Hyde, a really good ME specialist and have tested positive on classic ME tests, like brain hypoperfusion and enterovirus infection. Recently I started to think there was something else going on, which is why I am here.
I did the finger test and yes, I do see two fingers, more so if I don’t try to focus on the finger and just look directly in front of me. If I try to focus on the finger, it also becomes double, but it takes a little bit longer and it kind of makes my brain sensitive to focus. It becomes 1 finger if I close one eye. I’m not sure if I’m doing this correctly though. What if it’s only cause by the fact that my glasses are adjusted for me to see up close ?
I will certainly take your advice into account. I already have difficulty breathing when I bend or move around, on and off. This, too, is an ME symptom. Aggravated by chronic asthma in my case. I did a COPD test recently and think it was not 100% normal, but not alarming.
I will call to get a doctor’s appointment tomorrow. I should get it within 1 week. If I have trouble breathing, I will go to the ER. I am in Quebec, Canada, near Montreal. If I go to the ER, there will be a 12-15 hours wait at least, maybe 18. Unless you’re practically dying, which is not my case. In my condition, this is not something you want.
Can you describe to me what breathing problems that need a visit to the ER look like with MG ?
Thank your so much for your help. I really appreciate it.