Hiya everyone. It's been a bit, but I'm finding I'm having a rough go of it as of late. In April, I finally got to see another Neurologist, and started the process over for getting treatment with my MG. Went though the tests again, and surprise, nothing came back saying I had it. The EMG was inconclusive, and blood work wasn't abnormal. So the Dr decided it best to not treat, like the first one. So yay for that. I called the insurance company again, got a new one, and got an appointment for a month or so ago.

I went, taking my test results with me, as I didn't want to go through the pain of an EMG again. He said he wanted to treat this aggressively, and gave me a thing for mestinon and prednisone. I told him that I wasn't sure how the prednisone would treat me, but I wanted to give it a try again. Well that probably was my first mistake. I had a fear it would mess me up again, and it did. Between the throwing up, the dizziness, blurred vision, and what seemed like a lack of coordination all together, I made it almost 2 weeks on it, before I couldn't do anymore. It didn't make me feel any stronger, and all it did was tear me apart from the inside out. The mestinon didn't help me at all either, even after two dosage increases. Sadly the second increase started making me a bit dazed and lightheaded, and double visioned at times, so he told me to stop taking it.

I went back to him two weeks ago, and he doesn't know what else he can do for me. He claims that unless it is a crisis situation, IVIG is out of the question, and he said if I can't tolerate the prednisone, he doubts I could handle something stronger. He said he was sorry, but honestly, I feel like I should be the one who is sorry. It seems like there is no hope for me with this, and honestly it has me down.

As of last weekend I have returned to myself, and I'm managing again without meds, but I'm still weak most of the time. I'm so frustrated with my life right now. It isn't for a lack of trying on my part, but I feel defeated. I can say I'm pretty used to being this weak, and I have learned how to modify things, and handle my body and all that pretty decently without medication. But I'm still not strong enough to work, nor can I function like that everyday.

There are days that it is just a challenge to watch tv, or use the computer. Then there are other days where I'm semi-normal, able to walk distances, bowl, or do other semi-light activity without any issue. I just don't know what else I can do. I sadly am a bit worried about doing stronger medications, like some of the stuff you guys are on, due to how I react to medications. But I would be willing to try it on the hope that it could let me work again, and try to live a more normal life. But if the doctor is concerned, I probably should be too right?

I know this is probably a lot to read, and I'm sorry, I just needed to get it out. The last week or two, I just haven't been myself. I've been kind of depressed over it, and the only thing that has made me happy was a outing to a nightclub last Saturday with friends. I had another sparkle night as you guys call them, and it felt amazing to let go, and just dance my troubles away. But afterwards, there is always a price to pay, and I guess in that instance, I was happy to pay it.

So if you guys have any advice that you could give me, I'd be very grateful. I get the feeling there isn't much else I can do at this point but deal with it, but I guess I need reassurance that I'm doing the right thing here. I know the sadness will fade over time, and once I get back into my normal routine, I will hopefully return to my optimistic self, but right now I'm just sad, and sadly, no one but you guys can understand. Thank you as always for listening, and being such a wonderful group.