Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello
I was diagnosed with Myasthenia Gravis in July 2016 and since then have been on mestinon. I moved areas therefore got a new neurologist and went for a check up today - as my first neurologist was private the only information available to the new one were letters to my GP which confirmed my blood test was normal. He then asked me if my first neurologist had done the nerve test and did I know the results? I am almost certain that this test was normal as well because I remember reading up on people who are double negative. He said he would repeat the test anyway but if it came back normal there was no way I had Myasthenia Gravis and that would be that it was pretty clear cut in that it’s either the blood test or the nerve test which confirms it. I asked him what it would be then if not MG and why on earth I would be pescribed medication if so and he just said it would be ‘tiredness’ - I have all the symptoms of MG (droopy eye, double vision, right side weakness with limp and sometimes my fatigue is so bad I just have to stay in bed). I don’t know anyone I know that when they’re just ‘tired’ all of that happens. I was wondering if there was anyone else with similar experiences of double negative results but their neurologist still went down the route of MG? Just feel a bit odd about it all being told two different things and how healthcare professionals can have such differing views?!
Thanks in advance!
It helped support the MG diagnosis when the routine MG CT scan turned up a thymic mass. (My thymus was removed and the mass was benign.)
But what eventually confirmed my MG diagnosis was a strong positive on the single fiber EMG test -- a test which seems to be the MG test of last resort. All my regular EMGs were negative. I don't know what my treatment options would have been if the singe fiber EMG had also been negative.
For over 20 years I had MG symptoms (double vision, confirmed dysphagia etc) but was just treated symptomatically (no Mestinon) because whatever was wrong with me did not have a unifying diagnosis. I am now on CellCept in addition to the Mestinon.
I understand your wanting to have a diagnosis and treatment; however, it is crucial that you are not treated for the wrong illness. If you don't have confidence in your neurologist, see if you can locate another neurologist in your area who has a reputation for liking diagnostic challenges. And FWIW - and maybe this is just chance - as a woman, I have had more positive experiences with female neurologists.
I have a woman doctor now. She listens to me. She understands. That is so important. There were times I thought I must be going crazy!
Hang in there and find a doctor you like and trust. Good luck! Let me know how it goes.
It is frustrating not to have a firm diagnosis but I am happy with my neurologists open minded approach. Everything I have read about mg tells me that some people will have negative test results, based on what is known about this disease today. As scientists and doctors learn more, people that were previously negative have a positive result on new tests as they are developed and become available.
I agree with nanosecond, it is important that you aren't treated for the wrong disease. I also think that it is important that your neurologist does not just dismiss your symptoms and works with you to figure out what the problem is or confirms your previous neurologist's diagnosis of mg, I wish you all the best in finding a supportive neurologist. Let us know how you get on.
having a positive reaction to mestinon, my neuro said he wanted to have another test done; the EMG. I turned out positive. I had all those symptoms you have been having.. and more. Even though my first two tests came negative, my neuro had it all based from my DV, droopy eyes and weakness. It is pretty hard to relax not knowing that there is something obviously wrong within us. Get some more test done. Ask your neurologist for the other tests, tensilon, single fibre EMG,etc.. , if that’s the only thing that will help you know what is going on. Or ask another opinion; look for another neurologist. It helps knowing what is ahead rather than just guessing.
Goodluck and hope you feel better.