Quote:
Originally Posted by tysondouglass
Blonde-
I am also seronegative including Musk antibodies. I have been tested since Jan. 09, maybe 6 times and I still find myself negative. I have had several neuroloists (MG specialists) and they all agree I have MG through SFEMGs.
At first they tried mestinon for me, but it never did anything so i still to this day do not take it. I had my thymus out 2 months after diagnosis in september 09- after my surgery I got much weaker and there seemed like there was going to be no end to this weakness I experienced. I too had diaphram weakness, trouble swallowing, etc. I was on cellcept for 9 months, and have been on prednisone since november 09'. My dose of prendisone has been upwards of 80mg for the most part, though now tapering down and am on 40mg a day.
When I switched from Duke to Johns Hopkins for doctoring they switched me to Imuran and it seems to do be doing wonders. Though it is not at its full potential, yet.
By summer of '10 I was somewhat better..then went to college. (College + Immunosuppression doesnt work well). I was always sick due to living so close with everyone else, and I hope soon that can change because I miss going to school more than anything....
You need to find something that you can do to calm you down when the emotions start flowing...because even for myself (a guy who doesnt like showing emotion very much) it gets to be a little much...
It is very important to make sure you take care of yourself as you know. The heat is very dangerous to some people with MG, and taking naps frequently can help with this if you live somewhere hot. I lived in North Carolina when I was diagnosed but have been residing in Maine- Still usually have to take a nap everyday but the weakness is nowhere near what it was in North Carolina...
I do understand what you mean about the emotions going wild, and theres not much that helps that except for feeling the emotions and letting yourself know that they are acceptable for wht you are going through.
I am also on IVIG every month over 3 days. I hope to get rid of this as time goes on but right now my body doesnt want to because it has gotten used to how good it feels after.
Please feel free to contact me if you wanna, or need some questions answered. Although Im only 18 ive got quite the grasp on this disease..
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Hi Tyson,
Not sure when you replied to my email but just got notice today. I appreciate your reply and just wanted to say that I was on prednisone for about 3 months but had to many adverse reactions. And when it caused my stomach to burn Dr. T. told me I had to get off it because it could cause ulcers. I did feel better as far as the MG was concerned but the repercussions not worth it. I have started now to not feel as well but I really think my Dr. thinks its all in my head or from the stress in my life. He was very instrumental in
field of MG. So you kind of think he knows whats going on enough to correctly diagnose someone but he also told me that the heat does not affect MG, which I disagree with. He is in his 80's (I think) now. He tends to forget things. I have felt I may need a second opinion but I don't know who to go to. Sometimes I feel maybe he's right about my diagnosis but why do I not have the energy to function, why does my chest bother me, and now that I am off Prednisone I have much increased Fibromyalgia pain. Also my mid back has been really painful. Burning, sometimes shooting pain and aching.
I have not had this much FM pain for some time. I really think my immune system is turning on itself in so many ways. Anyway, I've gone on enough but wanted to mention
I was just in Maine last week. I was born there and most of my family lives there. In Farmington. I also, have family in the Portland area. Are you near by? I live in Ma. now for the last 15 yrs. I lived in N.H. for most of my first marriage and miss the Wolfeboro area. Anyway, if you can get back to me with any further suggestions I appreciate it. Hope things are alright, as best as they can, be for you. Blondie