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Old 03-14-2018, 09:43 AM #1
Dechi Dechi is offline
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Default Atypical MG ?

I hope I’m posting in the right section, if not, please move my post.

I’ve been diagnosed with ME/CFS in 2016. It started slowly in 2013, with muscle weakness being my main symptom. I had to stop biking because my legs didn’t have the power to push and the endurance to last. Now I basically can’t do any form of exercise, except very short ones (15 seconds before my muscles can’t go anymore).

Since then the weakness has increased, particularly in the last months. I had a fee days where my neck felt shaky from holding my head. Strange and scary feeling. All of my muscles, any muscle, will get tired after only a few seconds of use. Writing, chewing, holding a pot of coffee or even holding my arm in the air gets too much after 10-15 seconds or even less with repeated use.

I have seen a neurologist in 2015-2016 and he did 2 EMGs on me. One standard and the other one with muscle contractions. All normal.

I don’t have droopy eyelids, at least not one in particular. I feel both my eyes look a little more shut than they should be, always. I don’t have double vision, but I do have troubled vision in both eyes I think, occasionnally when the fatigue increases.

Could this be atypical MG ? I’m wondering if I should ask to be tested some more or just let it rest. If MG, some kind of treatment could help me. ME is untreatable and nobody tries to do anything about this. I’m getting scared. I live alone and must care for myself, which is getting harder.

Thank you !
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Old 03-14-2018, 05:17 PM #2
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Hi, Dechi! I believe you are posting exactly where you should!

ME/CFS does not cause fatigable muscle weakness. Only MG, LEMS, and a CMS do (which are all neuromuscular junction disorders).

From what you are saying, you need to see a neurologist immediately. If you can't get in to see one, a primary doctor can run the Acetylcholine Antibody Tests (binding and modulating antibodies). AND do a clinical exam to determine how weak you are and if your muscles are fatigable.

2016 EMGs are not 2018 EMGS!!! Things change over time, and you obviously need new tests done.

What you are describing by your eyes being shut more is ptosis/droopy eyelids! And the vision issues could very well be double vision. A neuro-ophthalmologist can figure that out. Let doctors figure out what is going on! Don't say you don't have something if you don't know for sure.

If you hold your pointer finger out about a foot in front of your eyes and then bring the finger to your face and back again, how many fingers do you see? One or two? If two, then close one eye and see if the double vision (creating those two fingers out of one) goes away. That's a typical sign of MG double vision.

If you are so bad that your muscles are fatiguing that quickly, you really need to be in an emergency room. Do you mind saying where you live? Someone might be able to point you in the direction of a good neuro/MG expert.

Get yourself some help immediately. I truly suggest a hospital's ER. If you have MG, you can become so bad that you have trouble breathing. Don't be scared about that, just know that you shouldn't wait until you are that bad off.

I don't know if you have MG, but, in your current condition, I do know that you need help NOW! Please let us know how you are doing.

Annie
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Old 03-14-2018, 07:33 PM #3
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Quote:
Originally Posted by AnnieB3 View Post
Hi, Dechi! I believe you are posting exactly where you should!

ME/CFS does not cause fatigable muscle weakness. Only MG, LEMS, and a CMS do (which are all neuromuscular junction disorders).

From what you are saying, you need to see a neurologist immediately. If you can't get in to see one, a primary doctor can run the Acetylcholine Antibody Tests (binding and modulating antibodies). AND do a clinical exam to determine how weak you are and if your muscles are fatigable.

2016 EMGs are not 2018 EMGS!!! Things change over time, and you obviously need new tests done.

What you are describing by your eyes being shut more is ptosis/droopy eyelids! And the vision issues could very well be double vision. A neuro-ophthalmologist can figure that out. Let doctors figure out what is going on! Don't say you don't have something if you don't know for sure.

If you hold your pointer finger out about a foot in front of your eyes and then bring the finger to your face and back again, how many fingers do you see? One or two? If two, then close one eye and see if the double vision (creating those two fingers out of one) goes away. That's a typical sign of MG double vision.

If you are so bad that your muscles are fatiguing that quickly, you really need to be in an emergency room. Do you mind saying where you live? Someone might be able to point you in the direction of a good neuro/MG expert.

Get yourself some help immediately. I truly suggest a hospital's ER. If you have MG, you can become so bad that you have trouble breathing. Don't be scared about that, just know that you shouldn't wait until you are that bad off.

I don't know if you have MG, but, in your current condition, I do know that you need help NOW! Please let us know how you are doing.

Annie

Thank you for replying Annie. I know you’re trying to help but you’re really scaring me ! I have asked other ME patients and muscle weakness/fatigue seems to be a common symptom. I thought me ME was just getting worse, which is why I didn’t think too much of it until recently.

I have been diagnosed by Dr Hyde, a really good ME specialist and have tested positive on classic ME tests, like brain hypoperfusion and enterovirus infection. Recently I started to think there was something else going on, which is why I am here.

I did the finger test and yes, I do see two fingers, more so if I don’t try to focus on the finger and just look directly in front of me. If I try to focus on the finger, it also becomes double, but it takes a little bit longer and it kind of makes my brain sensitive to focus. It becomes 1 finger if I close one eye. I’m not sure if I’m doing this correctly though. What if it’s only cause by the fact that my glasses are adjusted for me to see up close ?

I will certainly take your advice into account. I already have difficulty breathing when I bend or move around, on and off. This, too, is an ME symptom. Aggravated by chronic asthma in my case. I did a COPD test recently and think it was not 100% normal, but not alarming.

I will call to get a doctor’s appointment tomorrow. I should get it within 1 week. If I have trouble breathing, I will go to the ER. I am in Quebec, Canada, near Montreal. If I go to the ER, there will be a 12-15 hours wait at least, maybe 18. Unless you’re practically dying, which is not my case. In my condition, this is not something you want.

Can you describe to me what breathing problems that need a visit to the ER look like with MG ?

Thank your so much for your help. I really appreciate it.
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Old 03-15-2018, 12:08 AM #4
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The reason I posted the truth about MG is so that you won't be scared! There are ways to treat MG so that you don't go into a crisis. The important thing is to make sure you seek out help right away.

I've been in a crisis and I'm still here! So are a lot of others.

Sure, some of the symptoms can be ME. However, fatigable weakness, which is what you are describing IS NOT a symptom of ME or CFS. In MG, the more we do, the weaker we become. We are relatively better with rest (and drugs).

I don't think any patient should assume that new symptoms are from something they already have. Many of us have more than one disease. In my life, for example, I have had MG, celiac disease, B12 deficiency, and asthma from Mestinon (a drug for MG). Other common issues are both a B12 and D deficiency, thyroid issues, metabolic issues, and other common ones such as anemia.

Patients with breathing issues should also see a cardiologist. And been evaluated for apnea by a pulmonologist/sleep doctor.

The two tests for MG that show neuromuscular weakness are MIP (maximum expiratory pressure) and MEP (maximum expiratory pressure). That is how they can differentiate between ME and MG. Do you have a pulmonologist?

When someone can't take a breath in or a breath out well, that is the time to go to the ER. Also, MGers can have swallowing issues and generalized weakness. Those too are reasons to go in. Any one of those three should prompt a trip in (or a call to a neuro when you have one).

Could you have autonomic issues? That's possible. But the fact that you have ptosis and double vision makes me think MG.

I had blurry vision for a long time, thinking that was only my astigmatism. Nope. I was misdiagnosed at age 10 with lazy eye/amblyopia. I've had MG my entire life, and just adapted to any situation.

People can have anywhere from mild to severe MG. The point is to find help and be tested as soon as possible. There's also the MuSK antibody test, and LRP4. So don't let a doctor dismiss you if an antibody test is negative. A good clinical exam, a RNS/EMG/SFEMG, and a Tensilon test can be done.

Anyone know of a good neuro in Canada? I know there are some really good ones there.

Yikes, I would not want to wait that long in an ER. That could kill someone! Does it help if you go by ambulance? If so, do that if you need to!

Some other tests they can do for breathing are an O2 (oximetry), arterial blood gas, and other breathing tests/pulmonary function tests (PFTs). I own an oximeter so that I can gauge how I am doing. I know what my normal is and can compare that when I go out and become worse.

Here's another "test" you can do at home. Take a photo of your face in the morning. Then do what is called an "upward gaze test." Without moving your head, look up with your eyes for about 15 - 20 seconds. Then take another photo. If your eyelids are droopier, that is fatigable muscle weakness. While this is only anecdotal, this is good basic evidence to show a doctor.

Keep a journal of all of your symptoms. Don't try to fit them into categories! Let the doctor do that.

I'm sorry you are alone. That is a scary feeling. But there are people out there, who can help. Social workers, for example. Definitely doctors right away.

Please, don't be scared! There are so many treatment options, and help is a phone call away. But you need to be your best patient advocate and try to figure out what is going on here.

I meditate. That helps so much with staying calm and relaxing muscles. Sleep is the best thing you can do right now (and naps). Extremes of heat and cold can make MG (and some other nerve/muscle diseases) worse. Stress is bad for us too. I'm sure everything will be okay!!! Just make sure your doctors don't leave any stone left unturned! Your instincts are telling you that something else is going on. Trust them!


Annie
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Old 03-15-2018, 07:49 AM #5
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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 !
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Old 03-15-2018, 11:25 AM #6
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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.
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Old 03-15-2018, 08:16 PM #7
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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
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Old 03-15-2018, 10:04 PM #8
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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 !
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Old 03-15-2018, 10:41 PM #9
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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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Atypical MG ?-237d7bc9-027c-4eb1-b10f-e7d4aa759845-jpg  
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Old 03-16-2018, 12:56 AM #10
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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
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