Seronegative's are you confident in your diagnosis?
 

I haven't tested postive for any antibodies but clinically was I thought diagnosed with MG. My neuro opthomologist believes I have MG based on my symptoms (constant double vision, droopy eye lid, throat numbness/weakness, difficulty getting a full breath, excessive salivation and left leg weakness) and asked that my neurologist start treating me for it. Neuro started me on some predinisode with tapering down to nothing and Cellcept. I noticed no differance and asked him to give me a trial of Mestonin. He did reluctantly but said that if I had MG the other treatment should have worked and wanted me to see a neuro muscular specialist for a second opinion.

Mestonin does help some - I say about 50% differance on some of my symptoms, but not the double vision and it wears off quickly.

The neuro muscular specialist my neuro referred me to says I should consider eye surgery since treatment is not working for MG. He did find some muscle weakness in my exam and wants me to have an EMG with him later this week. I had one done last summer that was negative.

My concern is - 1, I do not have MG and I'm taking all this unnecessary medication or 2 - I do have MG and we are talking about eye surgery.

How confident are you in your seronegative diagnosis?

I have similar symptoms and my antibodies were negative. I have finally been diagnosed with MG after an abnormal SFEMG. SFEMG are used for the definitive diagnosis of MG in some one seronegative. Have you had this done? if not, I would recommend you do so you have confidence in your diagnosis.

The docs put me on mestinon after I started falling. And I had a very good improvement. I would say it helps about 60% of my symptoms for 3 hours. There is a roller coaster effect because it takes awhile to take effect and then wears off after 3 hours.
After taking the first dose the first difference I noticed was how clear my vision was and my eyes did not go to double vision as often. The second difference was I could take a really deep breath and breath easier. Then I noticed I did not tire as easily. It is not a cure, it just temporarily relieves symptoms.

They had to increase the frequency of my dose to every 4 hours. I take 60 mg. What is your dose and how often do you take it?

I am confident in my diagnosis especially after the SFEMG and the positive effects of the mestinon.
kathie

I'm seropositive, so I can't speak about that. Although, they told me I was seroneg (long story) and it does leave you feeling a bit uncertain.

MG is, however, a clinical disease that is backed up with tests. There are many people who are clinically positive for MG, meaning that they have obvious fatigable weakness. Fatigable weakness is fairly specific to MG/LEMS/CMS.

Mestinon is only a helper drug. If I'm sitting around doing nothing, my ptosis is usually okay. The more you do, the worse everything can get, even on Mestinon. It's not a drug that gets rid of every weakness and it doesn't work well on DV for a lot of people.

What if you had eye surgery? You make the eyelids more taught but there would still be muscles there and everywhere else that would still droop. It might end up making you look like some of the women who can't move their faces! ;)

If you are only on Mestinon, it's not really a fair thing to say "Go right to eye surgery because the treatment for MG isn't working!" There are more treatments that more specifically help with DV and other MG symptoms. Surgery can be a real stressor for MG. So can the drugs they give you for it.

I think it is important to have some proof before you consider using more treatments for MG. This is a tough situation to be in. You should also know that antibody tests can become positive later, so redoing them might be a good idea too.

I think seeing a NM specialist, specifically an MG specialist, is a very good idea. They can take a fresh look at your situation, do the necessary tests and help you figure it all out. That would probably make you more confident in the diagnosis too (fingers crossed!).

Whatever you do, it's up to you and your doctor to figure out. But at least give an MG expert a shot at helping you get solid answers.

:hug:
Annie

That sounds about like my experience with the Mestonin. I take 60 mg 3 times a day and it wears off at about 2 1/2 hour. Most notably the vision gets clearer and my face doesn't feel as numb. Plus my limp is gone until it wears off. I haven't had a SFEMG done before.

Surgery wise the neuro muscular specialist was implying was on the muscles, not the ptosis. That's what scares me, my vision is terrible to begin with, before the double vision. I would think with all the symptoms I'm having it would head towards MG and am surprised at how quickly my doctors second guess it. It's disheartening.

Thank you for your thoughts. = )

Hi, your subject heading got my attention! As my long-suffering friends here know, I go through phases where I question my diagnosis.

I'm seronegative (three negative AChR tests, plus one each negative MuSK and LEMS). My first two single-fiber EMG's were inconclusive. Then I saw a specialist in MG, and he did a different kind of SFEMG (stimulated), and was confident that it was positive for MG.

I am being treated for MG with Imuran only. Mestinon doesn't help me at all. Also, I have very little eye involvement, and I have spells of intense weakness that last about 45 minutes, usually in the evening. Since these characteristics aren't typical of MG, I have doubted my diagnosis.

Right now, though, I'm feeling more confident that I have MG because I went back to the specialist who diagnosed me, and he told me something I hadn't known: that the test he did was strongly positive, not just "positive enough."

Unless I missed it, you haven't had a SFEMG. Although it is possible to have a negative SFEMG and still have MG, most of the seronegative people on this list with a diagnosis of MG were diagnosed by SFEMG. If you have doubts about your diagnosis, I hope you can get this test.

Abby

I am also seronegative. I worry about whether my MG diagnosis is correct. The mestinon does help a lot. Rest helps my eyes tremendously. I still have a worry that there may be something totally else wrong with me.

I wanted eyelid surgery. The surgeon won't do it. He is concerned that I might have trouble closing my eyes properly if he does it. I think he is being a pain; it would be really nice to be able to see out better. I guess there is always duct tape....... :eek:

Dottie, I'm assuming that you were tested for Lambert Eaton? The reason I ask is because I read that it often affects mainly the limbs. I also read recently that many people with Lambert Eaton have a dry mouth and dry eyes--do you have those?

Abby

I have a dry mouth and dry eyes. I also have weak limbs. I also have ocular problems, ptosis, and swallowing issues.