[tysondouglass]

I'm just getting very frustrated. I'm
sitting here in bed not able to excersize, and you all know that kills me. But my specialist says my weakness is not from the mg. So, I conquered mg, and was able to ski, but now this heart problem had
me sitting back down.

I guess I'm just confused at what this new problem is. The cardio said the abnormal heartbeat is not deathly or anything, which is nice? Yet what is it. I'm not living with the chest pains and weakness for the rest of my life. But he said he doesn't know what it is. So. How to deal? I'm
not sure.

I'm laying in bed waiting for them to come get me for the echocardiogram, and if that looks ok I'm going home...so I don't know what to do then. But will cross that bridge as it comes



Hope your all well.

[AnnieB3]

Tyson, You post as much as you need to. I have gone through more than most people should ever have to with medical stuff. It is frustrating, scary and most of the time you feel alone. I'm grateful I had so much support from my family and friends. Support is invaluable and you need it.

Second opinions are always a good thing. A fresh set of eyes to look at everything. You are in a hospital setting right now and they do things differently than a doctor in a clinic. Their objective there is to "move patients" in and out quickly, to get the most important medical problem taken care of. They are not the "regular" doctors - they are the emergency doctors. There is a huge difference. You may actually get better care if you see a few doctors in their clinic, and probably have more tests done.

I don't know which MG expert you are referring to but I would want to make sure that the "expert" has years of experience which qualifies them to be called an expert.

The heart is not the only circulatory organ. You have arteries all over your body. And your head too! I'm surprised no one has done an MRI, including your neuros, due to the head pain. And has anyone looked at your lungs or done a d-dimer to rule out a clot? Or any clotting disorders like APS (antiphospholipid syndrome)? Chem panels? Arterial blood gas?

http://www.aafp.org/afp/980215ap/morgan.html

Don't let that article freak you out. It's simply a differential of dyspnea (shortness of breath). I know you like to read. The possibilities of what is going on is fairly finite, so I'm sure they will figure it out.

You have to do something like set a reasonable goal. Give yourself SIX MONTHS of not exercising. I know that sounds ridiculous but what is really ridiculous is ending up in the hospital over and over again. You need to take a break from anything physical until you've figured all this out. Just accept it. It will be easier if you make a mental shift in your "perception" of your life right now.

I hope these docs can figure things out. Think about it. They see you as a relatively fit young man. Are they even considering another autoimmune issue? They could have a prejudice that is getting in the way of them seeing the big picture or all possibilities. Doctors themselves even write about how their prejudices can get in the way of them seeing everything. I'm sure they don't even want to think that a young man could have more than one thing wrong. But there you are, sitting on one of those uncomfortable gurneys, in a gown and not being able to walk around the ward. Something is going on.

Take it easy and have faith that it will be figured out. We've got your back, so don't worry about coming here and posting over and over. All of us, including me (though some people think I'm made of steel), need support.


Annie

[Stellatum]

I just want to say--don't ever worry about posting "too much"! We are your fellow mg-ers, and we understand what you're going through.

Abby

[Joanmarie63]

Oh Tyson, please don't ever feel you are posting to much.

We are all here to support each other, don't you forget that! You are young and confused {heck even I am still confused and I am 46}

As for your heart, I replied on your other post. I too get frustrated when the Dr. says, nothing is wrong, but your body is telling you something else.

Just listen to yourself, and remember, you have a lot of support here.

[DesertFlower]

Originally Posted by tysondouglass

I'm just getting very frustrated. I'm
sitting here in bed not able to excersize, and you all know that kills me. But my specialist says my weakness is not from the mg. So, I conquered mg, and was able to ski, but now this heart problem had
me sitting back down.

I guess I'm just confused at what this new problem is. The cardio said the abnormal heartbeat is not deathly or anything, which is nice? Yet what is it. I'm not living with the chest pains and weakness for the rest of my life. But he said he doesn't know what it is. So. How to deal? I'm
not sure.

I'm laying in bed waiting for them to come get me for the echocardiogram, and if that looks ok I'm going home...so I don't know what to do then. But will cross that bridge as it comes



Hope your all well.

Tyson, never feel bad about posting too much. That is what this place is for. This place is here for us to help each other deal with MG related problems - and sometimes that means posting a lot.

I also am having a hard time dealing with the limitations of MG. If I take it easy I feel pretty good but as soon as I try doing the things I love I often crash.

I also get minor breathing problems and my heart beats fast and hard for many days after I push myself. I haven't had a "crisis" but I have been close and almost ready to go to the ER a few times. Luckily I don't have breathing problems on a daily basis, but only after I push myself.

I am learning to rarely push myself and to know that if I do I will be doing nothing for at least 3 days and sometimes even up to a week.

With MG (for me), every activity has to be followed by a rest time.

Tyson, maybe if you limit your activities and stop before you feel tired, you will be able to do the things you love. I have had to schedule my activities and limit the total to 12 to 18 hrs a week - that is me pushing my new MG self to the limit. Any more than that causes misery for me. Maybe you can do something like this for yourself - of course AFTER you rest and figure out what is causing your current problems so you can prevent it in the future. For now I think you should rest as much as possible.

I feel bad complaining about my limitations since I have "mild" MG while taking Mestinon, which doesn't feel mild to me unless I don't do much (which is miserable).

I hope you are feeling good.

[Pat 110]

Tyson, we are always here for you and we all have your back. So post away kiddo! We all want nothing but the best for you. I hope you get some answers soon. We're all pulling you!

Big Hugs,
Pat

[Maxwell'sMom]

Tyson honey, we've all been where you are now, and we understand. Hang in there. It's good that they're checking every possibility. Unfortunately for you, your symptoms can be just about anything. And one by one, they're eliminating things until they find out what it is.
I do know what you mean, sometimes it seems like when I finally get one thing behaving, something else acts up.
Wish I could do it for you. Asking questions, is a good thing. You post until your hearts content.
Love Lizzie

[Nicknerd]

I don't think that you post too much, Tyson! Don't ever worry about such a thing...The site's for support, and we can't give/get support unless we ask..


Nicky