Myasthenia gravis. I got the results of my SFMEG today. They were abnormal. So I can say I have a definitive diagnosis now of MG. I have an appointment next week with the neuro-optomologist. I am going to try to get a referral to the neuro who did the sfemg. I really liked his manner. I feel somewhat validated and relieved that we can progress in treatment now. The neuro mentioned options such as cellcept, IVIG, plasmaphoresis and thymus surgery. I hope I am a candidate for thymus surgery. I feel it is my best chance for a full remission.

I told my daughter. She took it ok but I am sure she has not had the time to research it on the internet. I sure she will come back with more questions and concerns.

kathie

Well, that's progress! Congratulations, not on the disease, but on finally getting it identified.

I think it's a good idea to get a referral to the doctor who did the SFEMG. That's how I got my neuro, too. Not every neurologist can do them, so the fact that he performed the test means he's an expert in neuromuscular diseases. At least I think that's right.

Congrats too on having told your daughter. If she has questions you can't answer, encourage her to post here!

Abby

Congratulations on getting the diagnosis! Not that having MG is ideal, but I'm sure it's a relief to have the diagnosis so you can begin treatment.

At least you know now. I'm glad. It is good that it is not something worse too. Best of luck on getting a good treatment plan.

Sorry.....

And

Congratulations......

I read about the positive words of the practitioner but wanted to respond to the official announcement!

Really glad you can move forwards together with a great neuro instead of round and round in circles by yourself

Your at last going to get the medical support now that your diagnosed
Even thou you have known for some time that's why we're very happy
For you.
And having a good Neuro who listens is wonderful
Your body became weak but you became stronger
Alan

Yeah, it's good to get a diagnosis & bad having a disease. At least you have an answer & can now move forward. I have an appointment with the Cleveland Clinic so maybe I can hopefully get a diagnosis. I don't think my 1st Neurologist had much experience with Myasthenia Gravis. I'll have a long talk with the Cleveland Clinic's Neurologist explaining all my symptoms, tests done, tests not done & if they were done correctly.
Good luck, Bob

Kathie, I can't really say that I'm surprised, given how pathetically weak you've been! I'm glad you have proof now. Do you know what you're going to do next? Are you stable enough for surgery? I hope you can get the doctor who did your SFEMG test but sometimes they only do the SFEMG.

I'll bet you're really relieved, sort of. Give yourself some time to get used to this reality. I'll bet your daughter will be of great help to you in that.

Annie

Annie, thanks as always for your support. I am very relieved so we can proceed with treating the disease and not just the symptoms. The mestinon is working but I can feel a slow progressive downward trend. My lows are getting lower and my good periods are not as good. I spoke with the neuro-op and he is going to get me in with the neuromuscular specialist that did the sfemg. They are colleagues at sister hospitals so he has an "in".

The neuro-opt has increased my mestinon so I take 90 mg every 4 hrs.

The neuromuscular specialist and I talked during the SFEMG. He was recommending more aggressive treatment such as possible thymectomy, cellcept, plex and IVIG. I did say I wished for a thymectomy if I was a candidate. I feel it is my best chance for a full remission. I feel I owe it to my daughter to try and give her as normal a life as possible. If she was out on her own already, I might be more conservative.

I do not think I am in good enough shape for surgery. My legs on several occasions have given out on me and I have occasional shortness of breath. I think they will have to do PLEX to get me more stable first.

i think the injury from the last fall has aggrevated the MG. I am still doing PT and I noticed that I cannot do as many reps as when I started a month ago. It only takes 4 reps on the quadraceps for the fatigue to start and by the 12th rep, I can barely lift my leg a couple of inches. I keep going because it has improved the joint injury. Having weak muscle and a weak knee joint makes the stairs even harder to do then before.

They do the endoscopic thymectomy at Jefferson hospital. Has anyone had this done and if so, how long were you out of work?

I think I may need one of the chair/stair lifts. I cannot rely on my legs for the stairs. Some nights I literally have to rely on pulling myself up by my arm on the ballasters. I cannot carry anything up or down stairs. I need both my arms to manuever the stairs. I need to rely on my daughter to carry everything up and down the stair. She does not complain that much about it.

thanks
kathie

If you are seronegative, and do not have a thymoma, then a thymectomy is likely to be of no real benefit. I was "seronegative" when I had my thymectomy, and it didn't do a thing to help me. Three years later I found out I had MuSK MG. I was on Cellcept, Pred and IVIG and the test was still positive.

I did have the thorascopic thymectomy. It was a non-event, which is good since it was useless. I was part of a 10 year study that tracked the results between seronegatives and seropositives. Now I just wish I had my thymus back, because I believe it does serve a purpose for most.

I also have a daughter, and she was 1 year old when I got sick. I understand the NEED to do everything you can. It is very scary. However, she is now almost 16 and despite a very severe case of MG, we are making it! You will, too!

Good luck with your decisions.