Thread: Atypical MG ?
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Old 03-16-2018, 12:56 AM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Heart

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
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