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Old 01-16-2010, 11:40 PM #11
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Joanmarie,

I thought at first that I had overworked my muscles, but instead of getting less pain as the days went by, they hurt more and more and then I developed unrelated muscle pains in my chest/head/neck. Then I started getting nervous feelings that I relate to too much Mestinon.

I do think the initial sore muscles were from working like Alice said.

Maybe after I worked I was exposed to something else...chemicals, dust, virus, a plant, etc...and it caused the chest/head/neck pains and extra stiffness. Maybe I was exposed to something that reacts like Mestinon, like a pesticide?

Taking less Mestinon definitely minimized my symptoms immediately, and even now when I take this small dose of Mestinon I get stiff neck/chest muscles and I can't relax my shoulders completely...I think even now I am taking slightly too much.

I hope you and everyone are feeling good. MG is so unpredictable.

I feel guilty complaining about my problems, but it is scary to have something new, I am worried that my MG will be worse after whatever happened to me is over.
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Old 01-17-2010, 12:08 AM #12
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PMCPMC

Blood pressure. I don't have a home blood pressure monitor but it should be easy to check it somewhere and a good idea! I have never had high blood pressure that I know of, but new things are happening to me this year.

I can feel my heart beating harder than it usually does. I probably have high blood pressure. What might be causing it? I will get it checked before I call my doctor on Monday.

I am not taking Pred and have been happy that I respond well to Mestinon. I think your decision not to take Pred is a good one.

Stress makes my MG worse, in fact I am sure that stress was one reason I got MG in the first place. I have not had any big stresses this week.

One good effect of whatever is happening to me is that it has made me feel warm! I have been so cold all the time since winter started, but now I am warm and it does feel good.

Thank you for your input.

Interesting that there are others with this head/neck/shoulder/chest feeling that I am experiencing. It is new for me. If it is high blood pressure causing it, then I wonder what is causing high blood pressure?

Are you taking Mestinon or other medicine for your MG?

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Old 01-17-2010, 01:58 PM #13
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I have been doing one new thing these last two weeks that could be causing this, but I really doubt it. I have been trying to get a small amount of sunshine. I decided that the benefits outweigh any risks for me.

Ah-ha!!! Good ole Vitamin D!!!
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Old 01-17-2010, 04:04 PM #14
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Default No meds for mg

I had enough with the side effects
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Old 01-17-2010, 10:34 PM #15
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Desert,

Sometimes I get palpitations, not really pains, but feelings like I'm falling, or suddenly going down the high sloped drop on a roller coaster when I have mestinon time-release, so I'm pretty sure that I'm having overdose sx (that one is released into the blood-stream at unpredictable, differing levels, so sometimes you can get too much). I get blurry vision, sweating, twitching, and so on. It makes me very nervous (like I'm going to have a heart attack), so I get really physically tense too...Unfortunately, my muscles work very well when this happens at times, so it sucks that overdosing is what I need to make my muscles work...lol

But anyway, I really have this gut feeling that you might be getting better and therefore might be overdosing on the mestinon. I'm curious what your doctor will find tomorrow. I hope that this is the reason, and I wish you lots of luck in your appointment.


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Old 01-24-2010, 04:16 PM #16
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Desert,

Sometimes I get palpitations, not really pains, but feelings like I'm falling, or suddenly going down the high sloped drop on a roller coaster when I have mestinon time-release, so I'm pretty sure that I'm having overdose sx (that one is released into the blood-stream at unpredictable, differing levels, so sometimes you can get too much). I get blurry vision, sweating, twitching, and so on. It makes me very nervous (like I'm going to have a heart attack), so I get really physically tense too...Unfortunately, my muscles work very well when this happens at times, so it sucks that overdosing is what I need to make my muscles work...lol

But anyway, I really have this gut feeling that you might be getting better and therefore might be overdosing on the mestinon. I'm curious what your doctor will find tomorrow. I hope that this is the reason, and I wish you lots of luck in your appointment.


Nicky
Nicky,

These are generally my overdose symptoms too...but I have noticed that they vary a lot. Thanks for thinking of me. My appointment is on Thursday with my neuro.
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Old 01-24-2010, 04:31 PM #17
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This has been a strange and new experience for me, I suppose MG will always surprise us with some new thing.

I have something like bronchitus, I didn't go to the doctor since it wasn't that bad. I didn't even know what it was until I lowered my Mestinon dosage. When I lowered my Mestinon dosage I started coughing up mucus (yuck). I don't even have a runny nose or sore throat, but I did get a low fever that came and went.

When I took my regular Mestinon amount, my chest got so tight it was hard to breath so I really thought it was a Mestinon overdose at first.

Now that I am feeling mostly better...still trying to cough this stuff out...and my need for the previous dose of Mestinon has returned, the funny thing is...I don't have double vision at all! No more trouble eating or drooping face! I don't know what happened.

This week, when I get weakness, it is only in my arms and legs and nothing like it was before, only a weak feeling that doesn't stop me from doing most things.

Maybe it is the sunshine so I am sticking to this new routine of about 30-60 minutes of sunshine twice a week.

And you would think I would be happy, but I have sunk into some depression that I can't get out of...its terrible...I feel like the world is over...and I know it isn't true, but I feel so sad. I actually feel like something is causing me to feel this way because I can think logically of so many reasons for not feeling bad....I spend about 6 hours in bed crying this morning knowing I felt good enough to do some of the things I have been wanting to do since I got MG, and I didn't want to do any of the things I liked. What is wrong with me? Something is not quite right and I don't know what it is.

I am still sick with whatever I have so I do need to take it easy.

I hope everyone the best
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Old 01-25-2010, 07:01 AM #18
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Default mestinon - too much?

Desert,
I wish I had some words of wisdom that would make you feel better but I don't. Just know that you are in my thoughts and prayers. I can tell you that I understand how you feel. This disease is so incredibly depressing in itself but when you get sick on top of it it can be overwhelming. When I got sick at New Years I remember crying alot too. I felt like if this was the best life was going to be for me why do I keep fighting. Once I got better my depression got better also. However I did make some decisions to change parts of my life. I have applied for disability and have forced myself to slow down. I am scared I will get denied on the disability but I am giving it a shot. I just can't work like I used to and I finally had to face that realization as difficult as it was. Try to rest and take care of yourself and hopefully once you kick the bronchitis you will start feeling better again. If you don't feel better soon you probably ought to call your Dr to see if he thinks you need an antibiotic. I have found it is so much harder to recover from things with the MG.
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Old 01-25-2010, 10:54 AM #19
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Hi Susan,

I hope you start feeling better soon. If not, I agree you should see your doctor, you may need an antibiotic. This disease is always full of surprises and sometimes it can be a little more than we can handle. I couldn't possible tell you how many times over the past 11 years, I've gone into a mild depression, had a good cry and pulled myself back out of it. A good cry can often do wonders! I hope this is the case with you too. It seems just when you think you have your meds just right, something messes it up, but it will get better. Just be sure you're not fighting an infection. Thanks for sharing and I'll be keeping good thoughts. Feel better and keep us posted.

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Old 01-25-2010, 01:24 PM #20
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Desert,
However I did make some decisions to change parts of my life. I have applied for disability and have forced myself to slow down. I am scared I will get denied on the disability but I am giving it a shot. I just can't work like I used to and I finally had to face that realization as difficult as it was.
Kendra
Kendra,

Thank you for the reminder about disability. I guess I need to apply even though my doctor said my MG isn't bad enough for me to get it. He isn't here with me every day to see how much I have to rest just to be the "normal" person he thinks I can be.
I keep asking myself "what kind of job can I do with MG?" and trying to figure out a new career for myself and I just can't think of anything that works. What company wants to take a chance on a new employee knowing (or else I hide the fact and I know) that I have to take random days off work to rest?
How is the easiest way to apply for disability? My mom suggested finding an attorney who does this for a living, she said that they take a percentage of the first check and don't charge if you don't get disability. I have such limited energy that this may be the best thing. Did you apply for yourself? I am wondering how much work it will be if I do it myself...I see that you can apply online.

Thanks for thinking of me.
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