I have symptoms similar to MG. No one can tell me what I have, but because I have negative "ACHR MODULATING" and negative "ACHR BLOCKING" and normal EMG and NCS tests, I've been assured it's not MG. My only symptoms (for about five weeks) is profound muscle fatigue after minimal muscle use. Sometimes only the muscle used gets fatigued, but sometimes it seems one overused muscle (as little as a minute) collapses my whole muscle systems. I look like a rag doll for hours until I seem to recover. Sometimes between spells I'm perfectly normal for an hour or two. I'm mostly on the couch all day trying to keep all muscles happy. I only had pain on the first day ... and it was substantial, primarily in my shoulders and arms. The fatigue war started after the pain left.

This happened twelve years ago and lasted about four months. I've had short spells of it here and there, but no more than a day or two.

Any thoughts?

Am I correct in reading that it only happens for a couple of days, and then you are ok for a longer period? If so it doesn't sound like MG, but MG can be very variable.

It lasted four months when I experienced it twelve years ago. I'm in the sixth week this time. In the interim twelve years, I experienced a day or two or so once or twice per year when it seems to be flaring up but resolves.

Does MG come in flares like other auto immune diseases or is it more ever-present. I've been basically clear of the symptoms for over a decade. Even in the last six weeks I had one day I felt normal, but I did more on that day and was terrible I'll the next.

I'm basically bedridden for now to keep my muscles from going in to fatigue mode. I avoid the fatigue because it becomes full-body if I'm not careful. Then I in a collapse where speaking is difficult and moving is difficult.

So, does the on-again, off-again nature of mine make it sound like something else?

Sorry for all the typos above. That was from my phone without reading glasses!!!

Hi, Lisa. Welcome.

Did you know that there is the MuSK antibody test, too? And being seronegative doesn't mean that you don't have MG.

It's not very typical for MG symptoms to come and go as you describe. Some people with congenital myasthenic syndrome can have that happen. Are there any diseases that run in your family?

If your "normal" is to be weaker than other people, and you have times when you are worse, it's possible to have a milder form of MG. MG can become worse with hormonal changes, heat, surgery, infection, lack of sleep, stress, and lots of other things such as certain drugs. Did you have anything happen during those "flares" that you can recall might've made you worse?

A Single Fiber EMG is what most MG experts will do on clinically weak muscles. A negative EMG or repetitive nerve stimulation test does not mean that you don't have MG.

Do you have double vision or droopy eyelids? Have you taken photos of your face to see if you do (same lighting, face angle, etc.)? Do you have any photos of yourself during the times you had those episodes of weakness?

If you have DV or ptosis, you could see a neuro-ophthalmologist and have them assess what's going on.

Have you had your thyroid or B12 checked? Have you been tested for celiac disease or Lymes?

I can't say if you have MG or not—only a doctor can. Maybe you should check in with your primary doctor to see if they can further evaluate the situation.

In the meantime, write all of this down, along with any symptoms you might be having. Look for any patterns.

I hope you can find someone to help you figure it out!

Annie

It might be worth googling Hyperkalemic Periodic Paralysis and Hypokalemic Periodic Paralysis.

Abby

Good point, Abby.

http://neuromuscular.wustl.edu/synmg.html

http://neuromuscular.wustl.edu/mtime/mepisodic.html

Annie

I was thinking hypokalemic PP too. I went to the lab for a blood draw today but by the time the details were worked out and I got there, I had been okay too long. I watched a youtube video of someone experiencing hypokalemic paralysis. I could tell it is way different than what I experience. My muscles all feel fatigued to the point of collapse but in not weak or paralyzed. I can choose to do whatever I need to, I just feel so bad and tired, I don't want too ... and any muscle use exacerbates an already terrible situation. Speaking, smiling, moving are all difficult. I have nothing in my eye region except that when a collapse hits, I want my eyes shut because keeping them open is tiring. I look like a rag doll from 1-3 hours or more. When it's over, I'm mostly normŕl.