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...
Just wondering if others have had the same experince. I started with double vision in 3/15 and by 7/15 had leg, neck, trunk and arm weakness too. Saw my PCP and waited until the end of 9/15 to see a neurologist. She did ay one point think I had MG and prescribed Mestinon. IT WORKED!!! But she would only let me take 3 60 mg pills a day and when I told her I felt I needed more she determined I did not have MG and the Mestinon did not help. She decided it was all psychological.... So since then 2 of the 3 nuerologists I have seen simply agree with her notes... Most recently the neurologist I saw (at a large, well respected teaching hospital) told me that Mestinon could not have helped since my medical record said it did not. Did not matter what I said... Also has a single fiber EMG with this neuro and I think - after reading about how they should be done - that he did not do the test correctly. Anyhow when he called to tell me the test was negative and there is nothing neurological wrong with me - I questioned him again asking why Mestinon helped me - he said "Mestinon is a very generic medication and it helps a lot of conditions.." I have looked and do not think it is a very generic medication...
I am frustrated and tired of feeling I need to fight for a diagnosis. I miss work and can not do what I need to or want to outside of work. The more I go from doctor to doctor I feel it makes me look even worse - like it is psycholgocial... Both antibodies were negative and EMGs also normal.
I have double vision when looking down mainly and none with one eye closed. My eyebrows just seem to slide down my forehead during the day to where they are right above my eye lids. My eye lids do get very heavy and close on their own but only when I am really weak. My muscles get weak when I talk, chew... When I swallow liquids they sometimes back up into my nose, I choke on some foods. My neck is very weak - it takes a lot of effort to keep my head up. My arms, legs, trunk, hands... are weak and get more weak with use. Heat, stress and use make my symptoms worse and rest, cold and ice makes them better.
I also have a lot of pain. It is muscle pain. I have large knots both sides of the back of my neck - they run from below my ear to the spine. PT told me they think it is from my muscles overworking trying to support my head. Have muscle pain all over - again better with rest and increases with use. Also my stomach has kind of stopped working. CT scan showed ileus. The muscles that help with digestion and movement of food through my system are not working properly.
So I am in pain, weak and have GI problems... But it is all in my head??? Has anyone else had the same experience? I try to stay positive but I am running out of patience. I can not work a full week. I can not do the things I need to or want to ... So tired of this when I know there is a medication that helped...
It would seem that the doctor would prescribe Mestinon if it helps you even if she doesn't think you have MG. Mestinon is not really a drug that anyone would take if they didn't have too!
Good Luck, Russ
My advice to you is that you go to a neurologist and do not show your old reports
Just go to a good neurologist and say i have these symptoms and i am very weak and i have this and that
Don't mention that you saw doctors before and what you took before
I had the same problem with doctors before and that's what makes you depressed when you have all these symptoms and your tests still come back negative
This is the mist difficult part of the disease since once you are diagnosed the treatment starts
Best of luck
I am also so sorry for the runaround, and the lack of treatment you are receiving. Your story, although somewhat common, is an unfortunate reality for some us who have MG ; a rare disease with fluctuating signs/symptoms, unknown antibodies, difficult and sensitive electrical tests, overworked medical professionals who are unfamiliar with the condition, etc.
I agree with a lot of what basma has said above ; most of us have gone through multiple Neuros before we finally found a good fit. Your response to the mestinon is very telling though; and it is NOT some "generic" medicine that helps "lots of conditions". Also, your hunch about the possibility of the electrical testing being done incorrectly is well-founded, as the literature shows a certain percentage of testing to be variable based on the experience of the tester, the testing environment (cold room), and the person being tested (not currently on mestinon). Many variables can skew results.
Start fresh if you can. Don't give up. Good Luck to you.
And I began to think it was all in my head since no one could tell me what was wrong. My doctor said she just had a "gut feeling" that the symptoms didn't fit any one condition.
Why? It didn't take me long (as I looked online for the possible reasons for my first symptom... double vision) to find myasthenia gravis.
I immediately started weeping with the realization that all of the things I was experiencing were real, were due to a chronic and incurable condition and professionals should have also been able to easily recognize my symptoms, diagnosis the condition, and start treatment.
How frustrating that more information and understanding is available from other people suffering from this muscle weakness than from those who are medicating us.
Now that I've been diagnosed, I have a neurologist treating me by phone (most of the time through his nurse). It took me months to get in to him and now I feel like I'm on my own anyways.
So I find myself wondering how many mg patients he's treated and if he's knowledgeable about the drugs and how they affect mg. I hope he'll weigh how miserable I am with med side effects and the horrific long term risks of his prescriptions with any benefits.