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Old 09-05-2016, 09:19 AM #11
Snoel Snoel is offline
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Hi Patrick,

Yes you can take D3 no problems, I'm taking a massive amount weekly 40.000
ui get them prescribed by your Doctor they're not expensive and you can get them in 5000,10000 and 500000 ui

I take 10000 every second day and it has helped me a lot since I live in a northern part of the country I don't get much sun exposure and since I've been diagnosed with Myasthenia I don't tolerate the sun and heat very well...
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Old 09-05-2016, 06:01 PM #12
patrick123 patrick123 is offline
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Default Dear ttmmkk001....Your Vit. D level is seriously low...

Quote:
Originally Posted by ttmmkk001 View Post
Thanks, Patrick123
My vitamin D level is indeed really low. I think it was about 9 or something. Does it have any thing to do with MG. Can a person with MG take D3 supplement everyday?
Didn't your neuro recommend Vit. D supplements? For many D3 is more effective than D2. ..**Please read, and read again the info in the link provided. Friend, you must learn about MG, or you will not know when you are not getting optimal treatment advice. ...Vitamin D3

Last edited by Chemar; 09-05-2016 at 06:59 PM. Reason: ** NeuroTalk Guidelines
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Old 09-05-2016, 06:17 PM #13
AnnieB3 AnnieB3 is offline
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ttmmkk001, Vitamin D3 supplements are very important, especially when your D level is so low. I personally take 10 - 15k of it daily.

In your case, you should see an endocrinologist to assess the bone issue and D at once. I would also recommend that you have your vitamin B12 tested, since that's a common deficiency as well. Research endocrinologists and find a good one. Some of us with MG also have thyroid issues.

If MG becomes worse, you can always go on Social Security Disability Insurance. It can take up to two or so years to be approved, so consider that going forward. It's not as much as you would get while working, but it's better than nothing.

I hope you will give yourself some time for this all to sink in. It's hard to adjust to the idea that you're sick! And any family or friends need to adjust as well. You do not have to inform an employer about your illness, however! How or when or if you do that is up to you.

Annie
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Old 09-09-2016, 03:13 PM #14
ttmmkk001 ttmmkk001 is offline
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for the last 5 days, i've been having tightness jaw, breathing difficulty, and stiff neck. I guess these are the generalized MG symptoms. My question is how long does it take for the symptom to get to the stage that i am unable to work?
Will the treatment prevent them from getting worse?
Thanks all
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Old 09-09-2016, 04:31 PM #15
AnnieB3 AnnieB3 is offline
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No one can predict what the course of MG will be for each person. I'm sorry, but there is no way to tell if you will be able to work in the future or not! Try not to worry about that, okay? Stress makes MG worse.

If you are having real trouble breathing, you should call your neurologist AND go to the ER (dial 911).

The risk for a MG crisis is high when someone is newly diagnosed. They either don't know how to manage the disease or don't have the right treatments yet. PLEASE call your neurologist right away!!!

You can deal with the other questions later! But, yes, there are treatments that can make you better.

I hope you'll be okay.

Annie
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Old 09-09-2016, 04:51 PM #16
ttmmkk001 ttmmkk001 is offline
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Quote:
Originally Posted by AnnieB3 View Post
No one can predict what the course of MG will be for each person. I'm sorry, but there is no way to tell if you will be able to work in the future or not! Try not to worry about that, okay? Stress makes MG worse.

If you are having real trouble breathing, you should call your neurologist AND go to the ER (dial 911).

The risk for a MG crisis is high when someone is newly diagnosed. They either don't know how to manage the disease or don't have the right treatments yet. PLEASE call your neurologist right away!!!

You can deal with the other questions later! But, yes, there are treatments that can make you better.

I hope you'll be okay.

Annie
Thanks Annie!
I have app with my neurologist on september 15. I only have breathing problem when i lay down. I have one more question. Have u ever have dental care during your MG years? I have a big tooth's infection right now. My dentist suggested to have it extracted. If i do the extraction, it will make my MG worse. If i leave it there, the infection would make it worse also. Do not know which direction should i take. Annie, can i find u on facebook?
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Old 09-09-2016, 05:34 PM #17
AnnieB3 AnnieB3 is offline
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I don't know what to say about the dental care. They might try to put it off by doing an antibiotic first. There are antibiotics that can make MG worse, so go to Home to check into that.

You don't want a dental infection becoming worse, either. How have you done with Novacaine or other "caines" in the past? I personally do better on Xylocaine. But any of the numbing agents can make MG worse.

No, I'm not on Facebook. I don't do the social media stuff. Sorry.

I can't tell you what to do. Only you and your doctors can. I still suggest you call a neuro and discuss this, or at least with a nurse from a neuro's office. You don't want to do anything right now that would send you into a MG crisis!

I've had a tooth out. It's pretty quick and easy. If you can handle pain, they could always use a smaller dose of the numbing agent. And then take Acetaminophen for the pain.

I hope that helps.

Annie
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Old 09-09-2016, 08:01 PM #18
Snoel Snoel is offline
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ttmmkk001

Please don't wait to long if you have breathing problems, I'm talking from experience I started like you did having breathing problems over a 3 month +/- to the point that I couldn't talk...then it kept on creeping up that any type of movement or exertion would put me in a breathing frenzy I'd start chocking and throwing up!!!

My GP thought I had cardio problems, I had irregular heart beat and palpitations...when I was admited to ICU my red blood cell count got as high as 195!

Doctor's couldn't believe it all this caused by my breathing problems lack of oxygen, I couldn't talk without chocking it was an awful and scary feeling so please don't fool around and get help immediately...breathing has to be the worse symthoms for MG patients, get help right away believe me it'll make things a lot easier for you to get back on track, I waited to long as Annie mentioned I didn't know what were the signs of a beginning of a crisis now I know... This is why please take our advise.

Last edited by Snoel; 09-09-2016 at 08:43 PM.
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Old 09-10-2016, 12:08 PM #19
ttmmkk001 ttmmkk001 is offline
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Quote:
Originally Posted by Snoel View Post
ttmmkk001

Please don't wait to long if you have breathing problems, I'm talking from experience I started like you did having breathing problems over a 3 month +/- to the point that I couldn't talk...then it kept on creeping up that any type of movement or exertion would put me in a breathing frenzy I'd start chocking and throwing up!!!

My GP thought I had cardio problems, I had irregular heart beat and palpitations...when I was admited to ICU my red blood cell count got as high as 195!

Doctor's couldn't believe it all this caused by my breathing problems lack of oxygen, I couldn't talk without chocking it was an awful and scary feeling so please don't fool around and get help immediately...breathing has to be the worse symthoms for MG patients, get help right away believe me it'll make things a lot easier for you to get back on track, I waited to long as Annie mentioned I didn't know what were the signs of a beginning of a crisis now I know... This is why please take our advise.
Thanks Snoel, how did your breathing problem feel like?
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Old 09-10-2016, 12:16 PM #20
AnnieB3 AnnieB3 is offline
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Let a doctor tell you how you are doing, instead of guessing!

Poor breathing in MG can feel as though you can't take a deep breath in or a deep breath out or both. Chest wall muscles can become so weak that they spasm or cramp up.

O2 saturation can tank late in the game. Even in the low 90s, it can mean that MG is about to tank.

The deceptive part about MG is that a person can become weak so slowly that they don't even realize how weak muscles have become.

You can do a check of your muscles. How long can you hold out your arms for? How long can you hold your breath? How long can you sit up straight? How long can you stand for? Can you grip an object well?

There are many ways to check to see how MG is doing. But the best way when your instincts KNOW that you are worse, is to see a doctor in the ER!!!

Don't wait. This is one unpredictable disease and you don't want to mess with it!

I hope you'll be ok.

Annie
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