Did they give you a reason for a COPD diagnosis? I mean, did they say what might be causing that to occur?

http://internal.medicine.ufl.edu/fil...tion-Tests.pdf

I think you need to go to a pulmonologist. Ask them for the MIP and MEP, in addition to figuring out why you have COPD.

This is crazy doctoring. You should probably see a cardiologist. Why? What if you have pulmonary hypertension? That is not the same as regular blood pressure hypertension. Do you have any generalized edema, such as in your hands or legs? Has anyone done a pressure point check of those areas (pressing their finger into the flesh over the bones)?

Did you know that MG gets worse with an infection, such as the flu? Sure, some other autoimmune diseases can. But with MG, things become noticeably worse.

This is the info on MG and the testing.

MGA1 - Clinical: Myasthenia Gravis (MG) Evaluation, Adult

An interesting thing about MG is that the majority of patients have the first symptoms in the head/neck area. MG is considered a head and down disease, whereas Guillain-Barre is considered a foot and up disease. That's the pattern of the diseases revealing themselves. These are details that regular doctors just do not know.

There's also something called "enhanced ptosis." If the dominant droopy eyelid is pulled up on for ten seconds, then the less droopy one will go down while the droopier one goes up. That can go on for seconds.

You need a MG expert to fully evaluate you.

How much have you read about ME/CFS?

Diagnosis | ME Association

Chronic fatigue syndrome - Diagnosis and treatment - Mayo Clinic

Since apnea can be associated with the condition, it is very important to rule that out. You can't know if you have apnea without testing. Apnea can lead to other conditions, AFib and dementia for example. I don't think you should wait for that testing.

I'm not doubting the ME/CFS diagnosis. But it feels as though some things are being missed here. I really hope you can find a neurologist who is an expert in MG. Here.

MG Society of Canada

http://www.muscle.ca/about-muscular-...thenia-gravis/

https://myastheniagravis.ca

https://expertfile.com/experts/drvera.bril

Calling around can help to find someone!

I'm just sorry you are doing so poorly. And my gut is saying that you don't yet. have all the answers you need. Maybe you'll at least find some support along your journey to the truth!!! You sure need that.


Annie

Hello Annie and thanks for caring !

Noone has told me that I have COPD. My ME specialist who ordered it didn’t call me back, so I assumed it was normal. My regular doctor said if was normal. I’m the one thinking it’s not. At the end of april, I see my specialist and will ask him about that and also talk about the possibility of MG. He is pretty fast to refer his patients so I’m sure he will if he thinks it’s even a remote possibility.

I don’t have any oedema on my body. Muscular soreness, yes. I get massotherapy and the last months, I started not being able to tolerate touch. I figured this was the fibro part coming out.

ME/CFS I’m very knowledgeable about. I’m part of multiple support groups and try to be aware of all clinicial research and discoveries. I’m a little bit like am « ME Annie », lol !

Although I think my diagnosis is right, I always had some doubt in the back of my mind that there might be something else going on, because of the constant muscular weakness.

I won’t give up, I’m used to that. It took me a while to get diagnosed for ME and I owe it all to my persistance. These things take time, unfortunately, but it will happen. Maybe I don’t have MG and it’s just my ME and fibro flaring up, but at least I’ll know for sure.

I will update this thread when I have any development.