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

Hi Abby,

I was tested a few times too. I wish something concrete would show up but I know how I feel. For a while, I really tried to convince myself it was in my head because I thought maybe that the Neuro thought it could be but I KNOW it is not. The EMG I had was a waste of time and money because they didn't test the muscles where I feel the most weakness. But I trusted that the docs etc. knew what they were doing. IVIG would not be an option because I do not want any type of blood product from someone else. And I understand that its only a temporary help. I am curious about the Imuran. Did you try Prednisone or is the Imuran a better choice? Will wait to hear from you. Thanks so much again, Hope you have a good day.
Blondieslp

Hi Rachel,
Thanks for contacting me. I really appreciate it. The cold has affected me greatly too over the years but with hypothyroidism that has made it worse. It was just suggested yesterday that I start taking Folic Acid so will get some of that. I am already taking the other vitamins you mention. Can I ask, which medications you take for the MG and what works best for you? Are you just on Mestinon. That alone would not be enough. I really started to feel better with the Prednisone but my face was starting to get puffy. Now he is cutting me back to 30mg. every other day. Again, any suggestions or help is so welcomed. Have a good day. Blondieslp

Blondie,

I'm only taking Mestinon right now, I was started on 30mg 3x daily and then increased to 60mg 4x daily. It seems to be working pretty well. My neuro wants to hold off on steroids as long as possible. I'm all for that! I wasn't tested for MuSk, my insurance company denied the request, they felt there wasn't any clinical reason at the time. My neuro dx'd me based on symptoms and some improvement from Mestinon. I also have a B12 absorption problem which caused a host of their own neurological issues and might have caused MG to rear it's ugly head!

Have a good one!
Rachel

I'm still on my diagnosis journey...if everything is negative, how did the doctor decide it was still MG? I get the feeling that my doctors (and I've seen 3 neuros who all keep bouncing me around) don't have a clue why I would have symptoms and not test positive. I am an epidemiologist and and I understand the numbers and percentages; I'm not sure how much they put credence into someone's symptoms without some kind of medical sign. It makes me feel like I'm crazy, but why would someone fake increasing weakness/fatigue? I like to run! I like to be active! Why on earth would someone fake this? And how? I'm looking to hear from someone who may have been through something similar. I need some support.