Scared Stiff
 

Hello everyone! I am brand new to this site, but I really am having a tough time. I was diagnosed three years ago after my 24th birthday...The diagnosis came as a relief considering nobody could figure out what was wrong with me for months, but I did get to wear an eye patch!!
I had a thymectomy 10.31.2008, i havebeen forced to change careers, and now I am absolutely terrified to do ANYTHING that may push me over the edge and right back into the all-too-familiar ICU.
I know I am being silly, but it's gotten to the point where I don't even feel comfortable telling someone when I am not doing well....I feel like a burden to those closest to me...They were all there in the waiting room during my surgery and all helped take care of me afterward...I think it was just as hard on them, if not more!
I have resorted to turning my phone off and shutting myself in my apartment with my dog until I feel my energy creeping back. I don't have health insurance and my medical bills are up to six figures now, but I haven't been to a neurologist since my surgery! I would love any advice, words of wisdom, and any variation...Thank you, and I apologize for being whiny!

:p

chefginny,
Welcome to the site! You will soon realize that this site is full of wonderful, supportive and caring people. You are not whining .... you are survivinng.

I am so sorry that you are having financial troubles with your medical bills, I can only imagine that it adds to your stress. I am from Ontario so we have a government health care system, so I am lucky in that sense.

I am really concerned that you have not seen a neurologist since your surgery. Are you on meds? Are you able to cope on your own?

I know what you mean about not wanting to burden your family. I was there when I was first diagnosed. I quickly learned that I would continue going downhill without there help. It is something that you must do for your health, to have a good support system.

I look forward to talking to you more. Take care ~ Melanie

Hi! Thank you for your kind words! It worries me just as much that I have not seen a neurologist...I called the doctor that originally diagnosed me, but he is not working until the 6th of January! As far as meds, I can't afford them, so I haven't taken them in months...I am lucky I haven't had a crisis!!! When I feel the right side of my face start to get heavy or feel short of breath, I go to bed and do not move until I have to. It's really not ideal, I know. My muscle weakness is increasing considerably...I was folding laundry last night and I couldn't lift my arms...You know that kind of hollow feeling you have when you are weak? When your arm feels more like a straw than an actual limb?? I had to lay on my stomach and fold clothes...I do not mind making adjustments, it just feels a little....ummmm....unnecessary, I guess...

Ginny

Hi and welcome,

I'm sorry for all your worries and troubles.

You should try calling your nearest MDA office (muscular dystrophy association). My understanding is that they will arrange for you to see an MDA doctor for free not just once but as long as you need it. The only trouble is that you may not be near enough to one to be able to get there, but it's worth a try. Well, the other trouble might be that the MDA doctor may not be very knowledgeable about mg (I haven't had much luck but then my case may not be as clear cut as yours) But it's worth a try.

I don't know if they can help you with the cost of your meds, but it's worth asking about. Believe it or not, and please I don't mean to sound insensitive, you're in a better position in that you have an official diagnosis and your symptoms are classic symptoms which match the diagnosis. It should be pretty clear at this point which drugs you need, etc.

I hope they can help you.

Ally

Welcome to the place place for support. I too was in my 20s when I was DXed and was so happy to have an answer {I went years being told I was crazy}

The next time you are weak where you can't lift your arms, go to the E.R. I see you live in the U.S. so you know they have emergency medicaid. If you have to quit your job and go on S.S. Disability than so be it {I did for a few years}

Take heart, some of us do go into remission, be it with medication {or in my case without meds} I had 2 small boys at the time and my MG was so bad I couldn't hold my babies bottle but I did survive and I am sure you will too!

Now 19 years later I am back on my medication and not working but I have learned when to slow down and when I can't do something I don't, I am sure you know NOT to push yourself, the more you push the weaker you get.

So PLEASE go to the E.R. tell them you have MG but no insurance and you need emergency medicaid. You may be surprised at the help you can recieve.

Good luck and please keep us posted, again, welcome to our family.