[ttmmkk001]

Hi everyone!


I am 35 years old male, just diagnosed with MG. i have been having eyelid drooping for 2 months. And that is pretty much the only symptom i have right now. So worry and scare now as i know that other symptoms are on their way.


I have been dealing with eye problems since 2006. It all started in 2006 when i had double vision for a month. I did not even go to see doctor. The double vision and and eye drooping are off and on for the last 10 years without seeing the doctor until recently. The reason i went to see the doctor was because this time the eye drooping last longer than the previous times. As a result, i end up having MG. I do not even know if i just have MG recently or i have been with it for the last 10 years. Initially, can the eye symptoms such as double vision or eyelid drooping go away on its own without treatment. My eye symptoms for the last 10 years are off and on on their own. Do not know what to expect right now. Anyway, i just want to share my story. I wish everyone the best!

[Snoel]

Welcome aboard, this forum has very good advice and moral support it has helped me a lot...

I've been diagnosed back in 2008 I had a lot twitching in both eyes and left was drooping quite a bit but never had double vision after a while it went dormant and seemed to be under control, kept seeing my Neuro every 6 months and everything seemed fine, I refused to take any meds...

In Feb 2015 I thought I had a bad cold so I went to see my GP and as usual they prescribe you antibiotics, he knew I had Myasthenia and I wasn't aware to be very careful about prescribing certain antibiotics and ended up taking one that I wasn't suppose to and started me in a crisis!!! but as time went by I never suspected I was in a CRISIS...as time kept on going by I was getting worse so he kept giving other types of antibiotics... It got so bad I couldn't speak anymore nor eat or swallow, had a hard time holding up my head and very soar neck and started having a hard time breathing!!!

In mid April it got so bad I could barely breath, eat or swallow all I was eating is jello I couldn't drink water without choking I started losing weight...my breathing got so bad that is when I decided to admit myself to ER, my wife had to drive me in...I couldn't speak anymore and barely breath she had to do all the talking for me nor could I stand up she had to wheelchair me in...I stayed in the hospital for 8weeks and was off work for 10 months, I'm back to work now part time, I'm getting better weekly.

I'm not trying to scare you but don't do the same error I did...don't take this lightly and tell yourself it'll be OK! Get yourself a good Neuro and listen to him or her, get a list of MEDS to avoid taking and make sure your GP is up to par with your condition and take it day by day...

I'm now stable and have gained back my weight, strenght and eating is better than before being ill...I'm still medicated and doing a plasma exchange weekly.

I must say that I'm feeling as good as before, I still have some facial numbness and speach slur when I get tired or push myself a little to much, you have to reprogram yourself and change your habits and life style...in other words CHILL, LOTS of rest will make you feel a lot better.

Don't worry and listen to your body you'll be fine, I wish you all the best, don't let my story scare you theres no 2 cases the same, just don't do what I did and tell yourself I'll be OK and wait to the point that your over your head deep in a crisis, now that I got to know my body I listen to it!!!

I wish all the best

[ttmmkk001]

Originally Posted by Snoel

Welcome aboard, this forum has very good advice and moral support it has helped me a lot...

I've been diagnosed back in 2008 I had a lot twitching in both eyes and left was drooping quite a bit but never had double vision after a while it went dormant and seemed to be under control, kept seeing my Neuro every 6 months and everything seemed fine, I refused to take any meds...

In Feb 2015 I thought I had a bad cold so I went to see my GP and as usual they prescribe you antibiotics, he knew I had Myasthenia and I wasn't aware to be very careful about prescribing certain antibiotics and ended up taking one that I wasn't suppose to and started me in a crisis!!! but as time went by I never suspected I was in a CRISIS...as time kept on going by I was getting worse so he kept giving other types of antibiotics... It got so bad I couldn't speak anymore nor eat or swallow, had a hard time holding up my head and very soar neck and started having a hard time breathing!!!

In mid April it got so bad I could barely breath, eat or swallow all I was eating is jello I couldn't drink water without choking I started losing weight...my breathing got so bad that is when I decided to admit myself to ER, my wife had to drive me in...I couldn't speak anymore and barely breath she had to do all the talking for me nor could I stand up she had to wheelchair me in...I stayed in the hospital for 8weeks and was off work for 10 months, I'm back to work now part time, I'm getting better weekly.

I'm not trying to scare you but don't do the same error I did...don't take this lightly and tell yourself it'll be OK! Get yourself a good Neuro and listen to him or her, get a list of MEDS to avoid taking and make sure your GP is up to par with your condition and take it day by day...

I'm now stable and have gained back my weight, strenght and eating is better than before being ill...I'm still medicated and doing a plasma exchange weekly.

I must say that I'm feeling as good as before, I still have some facial numbness and speach slur when I get tired or push myself a little to much, you have to reprogram yourself and change your habits and life style...in other words CHILL, LOTS of rest will make you feel a lot better.

Don't worry and listen to your body you'll be fine, I wish you all the best, don't let my story scare you theres no 2 cases the same, just don't do what I did and tell yourself I'll be OK and wait to the point that your over your head deep in a crisis, now that I got to know my body I listen to it!!!

I wish all the best

Thanks for the reply!
you were diagnosed in 2008, and 7 years laters you have genralized symptoms?
All this time i thought if one can get through 5 years without generalized symptoms, then it is unlikely to generalize.
Now i am scare! I have thinning bone. I probably cannot handle prednisone.

[Snoel]

No one has the same symptoms, Doctors think what triggered my case into a generalized Myasthenia is the antibiotics I took that threw my immune system out of whack...

I was on the same page as you as far as being diagnosed as Ocular after all this time had gone by that's why just be careful as for what meds you take and don't overdue things, I was working 60 plus hours a week and living the life for over 25 years and I guess it caught up with me.

[Marijke]

Some stories you read here will scare the you know what out of you, don't read all of them. Not all MG is the same and you are very likely to have a mild form of the disease.

[FREDH]

I was not diagnosed until 2012, but from around 2010 until then, I knew something was not right. My symptoms started with chewing problems, then speech problems, (If I talked very long at one time). I was finally diagnosed in 2012 because I went to the eye doctor, and he said "I think you have MG". He sent to a neuro who did the blood test and confirmed it.
The mestinon took all my symptoms away, and I thought that mine must be mild. However, 3 years later that changed very rudely, and I had 2 crises spells in 3 months.
So, be careful, take you medicine, and listen to these people on this thread. They know what they are talking about.
Best of luck -let us know.
FREDH

[AnnieB3]

Welcome to the forum!

MG can be mild for someone for a few years, and then be worse, and then be better! The one thing that neurologists say about MG is that the only thing predictable about it is its unpredictability!

I wouldn't call anyone's bad experience a "horror story." Becoming worse is just a reality that some people with MG have. It's important to know that, so that a person can avoid pushing their body too far.

It's not about being scared. There's no point in that! It's about knowing as much as you can about MG and being prepared for anything—good or bad or somewhere in between!

Have you checked with an endocrinologist as to why you have thinning bones? It could be some underlying parathyroid issue.

No, Pred would not be a good choice for you! But there are other treatments, which your neuro should go over with you. You are in charge of your health, along with your doctor. You have to trust your instincts when deciding on any treatment plan.

So many things can make MG worse: infections, stress, hot/cold weather, lack of sleep, certain drugs (see Home for a list), doing too much of anything in a sustained or repetitive way, and many other things such as surgery. Get to know what there is about MG so that you can stay as mild as you can!

Drugs are helpful. But MG is ultimately managed with common sense and rest. Even those on drugs can become worse. It's such a guessing game! Don't let that alarm you though! A person gets used to their "normal" after having MG for a while.

I won't sugarcoat it, however. MG can put people into a MG crisis, where they can't either swallow well, move well, or breathe well (or all of the above). That's the time to dial 911. One can't predict how severe a crisis will become, or how quickly.

Not everyone who goes into the woods encounters a bear, but I sure would like to know what I'd need to do if I did!!! It's the same with MG. This info isn't meant to scare anyone, but to prepare them for what might happen.

Even if you don't have breathing issues right now, you might want to see a pulmonologist for baseline breathing tests. Then they will have something to compare to if your breathing were to become worse.

Set your MG up for success! If you get overheated, cool down and rest right away. If you have a cold or lung infection, watch for increasing difficulty breathing (and don't take a contraindicated antibiotic!).

My life isn't the same as it was, but I have a good life. No, I can't work. But I can't take drugs other than Mestinon. Some people work and are just fine. It's hard to say what course your MG will take.

Take some time to get to know MG. The people here are great! They can offer info and support. And it helps to read examples of what others have been through.

Anything else you need help with?

Annie

[ttmmkk001]

Thank you very much for every single comment here. My family is depending heavily on my income now. I can not imagine what will happen if i can't work. It really sucks. But it is life, and there is no "if" in life. I just have to live with it like all of you do here. I hope that my MG will not generalize too soon, so i still have some more time.

[patrick123]

Hi ttmmkk001, and welcome to the community. You will find many knowledgeable, and caring people here. I suggest that you have your Vit. D level checked. Many with autoimmune diseases have been found to have low levels of Vit D in their system. There is evidence that keeping Vit. D level in 40-60 ng/ml range is good for the general population. It appears as though those with AI disease should maintain AT LEAST this level. Currently, my level is at 67.7 ng/ml. Assuming no problems with calcemia, or calciuria, I intend to bring this up to about 90 ng/ml. This in the hope that Vit. D at this level in my system will stave off any worsening of my condition and keep it at its typically indolent state. Due diligence: Please study/research all you can about MG, including such info as is contained in this very post! Knowledge will demystify MG for you and will better enable you to make decisions regarding your treatment. ....MG appears to be particularly perplexing to doctors. As you read more here you will see that. Without a very good understanding of MG, we may not realize when we are not getting proper treatment. This is very important. Become an expert in MG!! Best Wishes, patrick123

[ttmmkk001]

Originally Posted by patrick123

Hi ttmmkk001, and welcome to the community. You will find many knowledgeable, and caring people here. I suggest that you have your Vit. D level checked. Many with autoimmune diseases have been found to have low levels of Vit D in their system. There is evidence that keeping Vit. D level in 40-60 ng/ml range is good for the general population. It appears as though those with AI disease should maintain AT LEAST this level. Currently, my level is at 67.7 ng/ml. Assuming no problems with calcemia, or calciuria, I intend to bring this up to about 90 ng/ml. This in the hope that Vit. D at this level in my system will stave off any worsening of my condition and keep it at its typically indolent state. Due diligence: Please study/research all you can about MG, including such info as is contained in this very post! Knowledge will demystify MG for you and will better enable you to make decisions regarding your treatment. One last thing, MG appears to be particularly perplexing to doctors. As you read more here you will see that. Without a very good understanding of MG, we may not realize when we are not getting proper treatment. This is very important. Become an expert in MG!! Best Wishes, patrick123

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?