I have been treated in the last few months as though I have myasthenia gravis but do not have the antibodies to it. I am on mestinon and more recently prednisone. I was really beginning to think there is a light at the end of the tunnel but now my neuro is cutting me back on the prednisone I think to get me to an every other day dosage. But I am beginning to feel like crap again. My emotions are beginning to get a little out of hand and the weakness I feel in my chest is getting worse. I have had most of my symptoms in my eye, really bad throat issues ( hoarseness, can't sing well and at times my voice is very weak), neck and chest area. Is there anyone with similar issues that would be willing to share with me their experience and what the future holds? Any help would be greatly appreciated. I also cannot handle the hot humid weather. It makes me very ill and I just can't seem to function. Is there anyone out there that is AChR negative? I don't even show with Musk. Please help?

Hi Blondie,
I am also seronegative, in fact negative in all testing with the exception of my CT showing thymic hyperplasia (thymectomy last year). I have found the heat this summer to be unbearable. It causes me to wilt rapidly. My symptoms are generalized weakness, mainly proximal, and bulbar with swallowing and slurring being the worst.
You are not alone.

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..

Blondie, welcome to the forum!

I too am sero-negative, you'll find there are many people who are. It is more common than it once was. I've also had a normal EMG & SFEMG. The hot humid weather is the worst, I don't do so well in extreme cold either. My symptoms are generalized, with my arms and legs being weakest. Right now I take Mestinon 4 times daily and vitamins B6, B12, Folic Acid, and Vit D all under the direction of my neuro. Feel free to contact me!!

Rachel

Hi, I'm seronegative too (tested three times, plus once for MuSK and once for LEMS). My eyes are almost normal. My arms and legs and neck (on and off) are weak, and the muscles in my sides are weak so that I sometimes wobble back and forth from the waist up as I walk. Sometimes my legs get so weak that I slowly, and very gracefully, collapse to the floor. I sometimes choke on liquids. My balance is terrible.

I stopped taking the Mestinon. It really doesn't seem to do anything for me, and it makes my left eye hurt. I have been on Imuran for three months, and two neurologists think it will put me into remission, but that I won't notice any improvement until the end of the year.

I had one course of IVIG, which seemed to make me quite strong for a few weeks. Then again, I am sometimes strong for a few weeks for no apparent reason. I always crash at the end of my cycle (I'm talking about female hormones) and then get better, but never all the way.

I had three SFEMGs: the first was borderline, the second was mildly abnormal, and the third, done by a different doctor, was clear enough to get me a diagnosis.

Abby

By the way, the heat doesn't seem to bother me. Weird, huh? I also have Graves disease, and am currently hyperthyroid (waiting for the methimazole to take effect), and that's supposed to make the heat intolerable, too. You'd think I'd be a wreck--I have never liked the heat--but I'm not. I don't know why. I'm not complaining!

On the other hand, shopping at warehouse home improvement stores for a new washing machine really sets off my symptoms. Luckily, they have those nice carts available for just such a situation.

I am grateful to be diagnosed. I'm seronegative and a lot of my symptoms are atypical. It took 15 months to get a diagnosis, which, considering the circumstances, is excellent.

Abby

Blondie,
I'm also seronegative and MUSK negative. I was diagnosed with a positive tensilon test and clinical sxs, as well as some improvement with prednisone and IVIG.

I'm on Imuran currently, though having difficulty going up to a therapeutic dose without my white count dropping too low. We're giving it one more try with the Imuran, but if it drops my white count again, will probably move on to cyclosporine.

My primary sx is double vision, but I also experience both arm and leg weakness, which is sporadic. It took a long seven years to get a diagnosis. It's possible that I'm dealing with refractory MG at this point, due to the delay in treatment. I'm hoping for the best with treatment, but expect that the vision issues won't resolve and this may be the best it gets.

And, yes, the hot weather does increase my sxs, though my neurologist doesn't seem to think there is a connection.

Cate

Thanks so much to all of you who have replied to my post. I really appreciate it.

I want to thank you all for responding to my post. I have to call the Neuro today to let him know how I am doing since he has decreased the prednisone. At first I thought he was taking me off it, but I can see from the schedule he has me on that he is getting me to a every other day dose. I was only on a full dose of 15mg. at breakfast and 15mg. at lunchtime. I will end up being on 30mg every other day. Can anyone tell me how much they take and or if they feel Prednisone really helps? I was feeling pretty good on the full dose but the weakness has come back and I am feeling discouraged. Even on what seems to be a low dose even at 30mg. daily my face was getting puffy. This is an adverse effect I didn't want to see. My Neuro, I don't think is convinced I have MG or that it is another Neuro disorder. I really feel that this is what I have. I had 2 occasions of double vision several years ago and it was chocked up to medication I was on at the time. Then 2 years ago I started with the shortness of breath and weakness in the upper part of my body and right eye lid, hoarseness, voice weakness, choking. In fact, I choke several times a week and have choked on my own saliva and inhaled it into my lungs. I choke on my pills and vitamins. I try to be so careful. Especially if eating in public. I am dizzy alot too and unsteady. I was bumping into things and some days are worse than others. I have lost over 60ibs. Not sure if the Mestinon is causing it but I get very shaky at times. In fact, I am feeling that way right now. The Neuro doc gave me Anaspaz to take for that but I try not to use it. Has anyone tried this? Or had a problem with Mestinon like that? Anyway, enough for today. Please contact me if you have any other help suggestions or answers to my questions. I am trying to being as informed as possible and to know I am far from being alone is of great support to me. I am new to this and I feel the best thing is to get educated as much as possible. Thanks to all, Blondieslp

Thanks so much for your reply. I really appreciate any info. I can get. As far as the heat, it makes me feel weak, sick to my stomach and I even get panicky because I can't breathe well. What specifically are you taking for medications etc. and do you feel you are doing as well as you could?
thanks, blondieslp