Newly diagnosed - could these be MG symptoms?
 

So I got blood test back this week saying I have the anti-achr antibody, and I'm waiting on an appointment with a neurologist. I was diagnosed with chronic fatigue syndrome five years ago and I have all sorts of weird symptoms. The big question in my mind is whether I have actually had MG for five years and never had CFS, or whether I have both MG and CFS.

I've never had facial or eyelid drooping, but I do get ghosting in my vision.

The fatigue and weakness is in my whole body, particularly my arms and legs. But the main symptom that effects my day-to-day life is brain fog, which I guess is derivative of the general fatigue. When I get really exhausted my mind just stops, I have no control over my thoughts and no reasoning capacity. When it's less bad I just get slow, forget words and can't link concepts with each other. Can MG sufferers get brain fog to this extent? The thing is it's a worse symptom for me than the bodily weakness, but that might be because I work in academia.

I'm also intolerant to alcohol and hypersensitive to caffeine. Could this somehow be as a result of MG? I can't see how it could be, but I'm new to this.

I also have asthma, but guess MG could be affecting my breathing. My lungs are very strong most of the time (on that test where you breathe into a tube), but then gets really bad and I have to use my inhaler a couple of times a day, which isn't the usual way asthma works.

It could all be MG, or not.

CFS, is (in my opinion) a catch all non-diagnosis, when doctors are too lazy to find the real cause. Yes you could have had MG for the last five years.

Ghosting... double vision, is that binocular or monocular. If you cover one eye, does it go away?

Brain fog, I get occasionally, when I am more than usually tired. But not as bad as you describe.

Hypersensitive to caffeine? How does it affect you? Caffeine has similar properties to Mestinon, which is used to reduce the effects of MG.

MG can be variable from day to day and person to person, but at least if you have a positive antibody test, you will hopefully be getting the right care and treatment from now on.

With your positive antibody results, your neuro will undoubtedly feel comfortable treating your MG. Whether you have more going on than 'just' MG remains to be determined. I agree with Julie that CFS can be a catch-all dx...are you taking anything for it?

I ask because before I got my MG dx, a very 'helpful' rheumatologist couldn't come up with a definitive dx for me and said, 'You probably have CFS - would you like a script for Lyrica?" I declined and never saw her again!!

You may want to do some homework before your neuro appointment. My neuro put me on Mestinon, but also offered a course of Prednisone to try to put me in remission. Mestinon is not curative...while Pred may successfully allow your immune response to reset (lots of opinions - pro and con - on this).

For me, it was a 'no thank you' to the Pred. My MG was not 'that bad' and I wanted to wait on the heavy hitting drugs until I got a lot worse (if I ever did). Pred can become a nasty little beast and I am grateful that I've not needed to take it.

Good luck with your appointment - let us know how it goes!

Thanks for the replies :)

It's binocular double vision, both on objects I'm focusing on that are close up, and objects I'm not focusing on.

Caffeine makes me really jittery, both physically and mentally. Basically makes me twitch and gives me brain fog. Even a small amount of alcohol makes me throw up for hours on end and feel intensely nauseous.

I've never taken anything for the CFS.

I have some knowledge of the treatment options because my dad has MG. His condition was really bad and he was put on prednisone, so I know the potential benefits and the side-effects. Guess the problem is I won't know how bad my MG is (i.e. whether CFS is also contributing to my weakness) until I've been treated for it (assuming the treatment helps).

If anyone's heard of alcohol intolerance being a thing with MG, please let me know! As far as I'm aware it's so rare outside of people who have CFS that if it isn't associated with MG, it seems pretty sure that I have both conditions.

Alcohol can worsen the MG symptoms. In excess, it can be compromising at least and dangerous to lethal at most. The trick is what constitutes excess. On a good day, I might be able to handle a glass of wine over an hour or so with food. On a bad day, I wouldn't touch wine. Hard liquor is out of the question for me at any time.

Thanks. I've looked it up as much as I can (though finding very limited information on the internet) and the reaction of throwing up and nausea (alcohol poisoning, basically) isn't a normal reaction for someone with MG, so it's probably MG and CFS.