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Old 06-19-2017, 10:46 PM #1
Hope4Me Hope4Me is offline
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Hope4Me Hope4Me is offline
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Default New to Group, Not new to Symptoms, Have Questions

Hello, I have been having muscle weakness and fatigue for probably 5 years or more. I am 50 years old. I did not go to my doctor very often because when I would tell him about my muscles hurting or how tired I was, he would blame it getting older and being over weight. So I would just suffer and think to myself, if I feel like this at 50, I don't want to see myself at 60. My 76 year old father could get around better than me without moaning and groaning.

Well, as time has gone by and now I am hurting pretty regularly and can notice much more weakness happening. Can't hold my arms up, my head feels like it weighs a 100 lbs which cause lots of pain in my neck and shoulders. (I thought that part was part of tension). My legs have also gotten worse. I have to go down steps backwards because they don't feel strong enough to go forward. Going up is even more difficult because along with muscle weakness I have arthritis under my Knee caps. I also have noticed double vision at times when my eyes seem really tired.

I have a couple questions:

Do your muscles feel sore more times than not? If I do any activity, which could just be going to the grocery store, a little while later I feel like I played a tackle football game.

I read on some threads that people mentioned about heat being intolerable, I was wondering if that is from MG or from the medicines? I am constantly hot and sweaty as soon as I start moving.

Does anyone have problems with their back muscles hurting and being sore?

I ended up going to a different doctor finally..... and she mentioned for me to see a neurologist to be checked for MG. Now after researching, I feel like I definitely have MG. I do not have an appointment with neuro until the end of this July, then I am assuming the wait will start for results.

Isn't it terrible that I'm hoping for a positive MG diagnosis so I can know that I'm not crazy, I can stop feeling guilty for being "lazy" at times, and hopefully help my attendance at work which has been getting very bad. And last but not least, I want to know if it's just me getting old cranky.

I just want some relief!

Thanks in advance!
Hope4Me
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AnnieB3 (06-20-2017), Skeezyks (06-20-2017)

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Old 06-20-2017, 12:02 AM #2
AnnieB3 AnnieB3 is offline
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Hi, Hope4Me. Yes, there is always hope!

You don't have to wait until July to have the AChR antibody tests (binding and modulating) done (send to Mayo). Any internist or PCP can run that test.

Pain can be a secondary symptom of MG, not primary though. When muscles become weak, they can cramp, twitch, and spasm. But MG is all about fatigable muscle weakness that is worse with exertion and relatively better with rest.

If you are sweating quickly, I would suggest consulting with an endocrinologist. MG doesn't cause sweating, but an endocrine disorder can. So can being overweight. If you have MG and your body becomes hot, that will make MG worse.

MG causes antibody destruction of the muscle receptors in the neuromuscular junction. Not enough acetylcholine can get through those reduced number of muscle receptors to get to the muscle. So, acetylcholine (uh-seat-ill-co-lean) makes muscles strong. Acetylcholinesterase (AChE) is an enzyme that comes along to "mop up" the ACh when it is done doing its job.

Heat increases AChE in the body. Therefore, there is even less ACh getting to the muscles, which makes MGers weaker. Does that make sense? That's why extremes of heat (and cold) makes MGers weaker. Heat seems to be particularly dangerous for us.

Think of MG problems as supply and demand. As the demand increases for ACh (after an activity), the supply goes down. The more we do, the less "muscle gas" we have. When we get super weak, we can go into what is called a MG crisis, where we need emergency intervention! Whether someone is very short of breath, cannot swallow, or cannot move well (i.e., squeeze their hands even), or all of the above, that is the time to dial 911. Whether or not you have a diagnosis doesn't matter at that point.

Why do so many women think they're crazy when they are having symptoms of an illness? Normal people don't have to struggle with walking up stairs or drying their hair or petting their dog or keeping their head up! Normal people can do pretty much what they want to—and all day long!

Have you noticed if you have ptosis (droopy eyelids)? Have you taken photos to see if they change throughout the day? Try this for your double vision. Hold your pointer finger in front of your face about 14 inches. Without turning your head, move your finger to the left and the right moving only your eyes. Do you see one or two fingers? If you see two, does that go away after closing your eyes?

That is typical of MG double vision (binocular DV).

Have you had other tests to rule out other conditions? Sometimes you can. have more than one issue at a time. Have they checked your RA factor or is your arthritis that of older age? What about your thyroid, B12 and D, CBC, metabolic panel, celiac disease (if you have symptoms), or any other testing?

I was very relieved once I had a diagnosis. That meant that I could finally have a treatment. If you are diagnosed, please find a MG expert! You need to carefully think about the treatment options and what affect they might have on you. Everyone is different. If a doctor throws Prednisone at you right away, please say that you need to think about all of the options. Pred can cause so many other health issues, including increased infections, water weight gain or edema, brittle bones, Pred-induced diabetes, etc.

Being overweight does not cause fatigable muscle weakness. Neither does aging or crankiness! Any good neuro can easily tell during a thorough clinical exam if you have signs of that. There is also the MuSK antibody test.

If you say what area you are in, someone may be able to recommend a MG expert (if you are diagnosed with MG). They can mean all the difference in the world when you have MG! You can also go to www.myasthenia.org or Muscular Dystrophy Association for more information.

In the meantime, take extra good care of yourself. Do not get overheated. If you do, cool down the entire body immediately. And then rest or nap. If you become worse, don't be shy about dialing 911. Please!

Annie
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Old 06-20-2017, 02:10 PM #3
Skeezyks Skeezyks is offline
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Hello Hope4Me: Welcome to NeuroTalk! There's nothing I can offer with regard to your particular concerns. I simply wanted to leave a note letting you know I read your post & I wish you well...
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Old 06-20-2017, 05:47 PM #4
Hope4Me Hope4Me is offline
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Thank you for your response. I am located in Maryland. I was tested for thyroid and vitamin D. Vitamin D was very low and they said thyroid was okay. I thought a couple numbers were on the low side.... I am taking prescription vitamin D now. I have not had any test for my arthritis. I know I have it under my knee caps because of an x-ray.

Thanks again, I appreciate it.
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