Thanks Annie ! I will definitely pursue this. I have managed to get a doctor’s appointment this morning. Unknown doctor but still, I hope he can help.

In the last 3 years, I have been tested for just abput everything known to man. I have seen countless doctors and specialists, including a neurologist, cardiologist, endocrinologist, internist, ENT specialist, ophtalmologist and probably others I forget. I don’t have a pulmologist but as I said, I was recently tested for COPD. I have an appointment for a sleep apnea test in 2019 to then be referred to a sleep specialist, since I have unrefreshing sleep. I do not appear to have sleep apnea.

I have low blood pressure, chronic sinusitis, chronic asthma, chronotropic incompetence, neurally mediated hypotension, some breathing problems, ME, fibromyalgia and surely some I forget. I did a 2 day CPET test and breathing/cardiac problems showed up. I am considered clinically severe for ME but I am not bedbound, « just » mostly housebound.

I’ve also been writing a journal of my symptoms for 3 years.

I’ll let you know what the doc says after my appointment this morning.

Have a great day !

I’ve just got back from the doctor.

Since I had the flu for 3-4 weeks about a month ago, they think it might have aggravated my ME symptoms. Apparently the flu is very harsh this year and people easily take 1-2 months to get over it.

They are sending me for basic blood tests, they suggested we wait 2 months to see how the muscular weakness evolves. Then, if I still feel the same, they will refer me to a neurologist who will do the appropriate testing.

They did a basic neuro evaluation and everything is normal. Oxygen saturation is 99%.

I think it’s very much possible that the flu has affected me. I’m surprised I didn’t think of it. I kind of had forgotten about it.

I will also see an eye doc, about the slight deformation on the exterior side of my left eye. I noticed it this morning when I was in yhe waiting room. Don’t know how long this has been occurring.

Wow, that is just nonsense.

If you do have MG, waiting is dangerous. And O2 saturation says absolutely nothing about whether someone has MG!!! That's ignorance showing itself.

Do you know that it takes an average of 1 year for a man to be diagnosed with MG. But it takes an average of 7 years for a woman to be? Yeah, disgusting.

I have no idea if you have MG. But what I do know that waiting—in case you do have MG— is something that a MG expert would not do. They would run the Acetylcholine antibody tests right away.

You have had these symptoms "in the last months," correct? Then the "flu theory" is not in keeping with reality.

If you don't have copies of your records, such as the breathing tests, get copies. There are things that doctors don't tell patients.

Let me try to explain what is meant by fatiguing muscles. Fatiguing, in this instance, means that muscles become weaker. That has nothing to do with sleepiness. Muscles that become weaker and droop means that there is something wrong in the neuromuscular junction. Sure, someone could have static drooping of eyelids, meaning that they don't go up and down. But weakness that fluctuates with activity (repetitive or sustained) is the hallmark of MG.

I hope you will be okay. If not, well, I've given what advice I can. Please know that not all doctors (or even neurologists) "get" MG. They are taught 2 pages about MG in medical school. This is a complex disease and can be easily missed.

Annie

I’ve had the muscular symptoms aggravated in the last month. Feeling that my head was too heavy for my neck is a new symptom that I had never felt.

But having muscular weakness is not a new symptom. It was my first symptom in 2013 and it just got a little worse every year, and again in the last month. Which is why they think it’s related to getting the flu.

I asked for the acetylcholine antibody test as you suggested, and the young doctor (a resident) looked like she was going to do it, but her supervisor probably talked out of it because when she came back from talking to her, they had decided not to, because her neuro exam was normal and because they thought I probably already had the acetycholine antibody test with the neurologist in 2015. She said it’s basic and surely someone must have done it.

If you can tell me what this test looks like, I can check in my file if I see it.

I was disappointed she wouldn’t do it. I see my regular doctor (a resident) in the beginning of may and I will make sure she does the test for me.

Meanwhile, I will stay alert and go to the emergency clinic if necessary. By the way we don’t get treated faster if we go by ambulance. It depends on what priority the triage nurse gives you.

Do you think it could be MG even though the neuro exam she did on me was perfectly normal ?

Oh, and yes, I have copies of all my records, including the breathing test. I am waiting for my specialist to interpret it for me. My regular (doctor) said they were normal, although some numbers weren’t, but she said those are not looked at !

Here’s my breathing test, I don’t know if you can tell anything by looking at it. This was done just before the holidays, after I told my specialist I had more trouble breath8ng than usual. Asthma makes sound when you breathe out, but this breathing problem makes sound when I breathe in.

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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.