I never heard of myasthenia gravis until the neuroglist said I have it.
I noticed that I would occasionally have double vision and that my left eye was not behaving. Having had retina problems, I prefer to be checked out by an opthalmologist. I found a new doc fresh out of residency and got an appointment on the second day his office was open. It was the most thorough eye exam I have ever had.
He asked me if I had a neurologist and he wanted to have him check me out before he wrote a prescription for glasses.
I made an appointment and he diagnosed me with MG, took blood samples, and gave me a prescription for mestion - that prescription gave me the worst diarrhea I ever experienced!
The blood test was inconclusive and it was about this time that the occasional tremor in my right hand got a lot worse.
In the 8 or 10 years prior to this, I had asked another doc it I had Parkinsen's Disease. Both said no - quit looking at Google.
My physical condition had deteriorated to the point where we had to move in with one of our kids in another state.
New doctors in a new town and I was diagnosed with both MG and PD. I responded almost immediately to the carbidopa/levodopa and turned down another prescription for mestion which I turned down.
My neurologist recommend an eye dr who was familiar with MG and other neurologic eye problems. On my first visit, he gave me reading glasses which gave me back the ability to read for more than a few minutes.
My distance vision was ok for a while but I was hesitant to drive - my left eye would partially close which made concentrating on things ahead difficult.
The week after next I will have my left eyelid to shorten it and help keep it from partially closing.
All in all, it has been a frustrating time for me. By the way, I am old which I'm sure complicates things as well. I am 75
Very informative, thanks
CommunityMember6366cb....Both MG and PD!! I am so sorry that is rough!! I am glad that you got some relief with carbidopa/levodopa!! I was first dx with PD years ago because of constant tremors in my hands/arms & head. Then had a bad reaction to the carbidopa/levodopa that I was prescribed. All I could do was sit and rock back and forth & cry for about 5 hours... Neurologist decided I did not have PD after that. Why did you turn down the prescription for Mestinon? I really work well for many of us, including myself (helps keep my eyes open.) Just something to think about according to the Myasthenia Gravis Foundation of America (Eyelid or eye muscle surgery is generally not recommended for people with MG.) this is the last statement in this. just before that is say's this" Agents that improve neuromuscular transmission, such as Mestinon®, may be helpful for ptosis (eyelids drooping), but are generally not very useful for diplopia (double vision)". I am not a Dr. and not giving medical advice...... Sometimes we need all the information to help ourselves. I am in my 60's and really, I understand how age can complicate things at time. Best Wishes!! Sally Farrier... Myasthenia-Gravis.com (team member). https://myasthenia.org/MG-Education/Learn-More-About-MG-Treatments/MG-Brochures/ocular-mg
I appreciate your comments. The mestion did work very well but the diarrhea was unacceptable!
The droopy eyelid is so obvious that people constantly call my attention to it.Oh, the diarrhea... I have a digestive disease and have that anyway at times. But yes, it is a pain!! I have seen from others where their Dr. has prescribed either something for the diarrhea or an alternative to Mestinon that works the same way.
My eyes are that droopy also!! I get it, being able to see all the time would be great...
We all have to figure out what will work best for us. Let us know how the eyelid surgery goes!!
Best Wishes!! Sally Farrier... Myasthenia-Gravis.com (team member).
I don't think I am positive for the antibodies, I was told that both times I was tested that the results were inconclusive
I haven't asked about the immunosuppressants. And even though I'm nearly as old as dirt I am somewhat hesitant to go on large doses of prednisone because I have received a significant amount of prednisone because of respiratory issues and joint and back injections. Prednisone also affects my personality in a negative manner.
My double vision is better with glasses that have prisms and I think that the eyelid surgery is going to help with blurred vision.
Thanks for the input.
Dan JonesYes the doctors at USF are great but it takes 6 + months to get an appointment with them and the drive there is 1 1/2 hours. Seeing my neuro-ophthalmologist on May 31st and yes he is a specialist for MG. Just left my Rheumatologist as I also have severe Rheumatoloid Arthris for the last 8 years and have been self injecting a bio lab drug call Actrema. He gave me a list of Rx drugs that are OK with my current injections and a list of Rx not to take without talking to him first. So my eye appointment on the 31st is a light at the end of the tunnel. Thanks again so much for your information and help. 
Some studies suggest that Tocilizumab (Actemra®) could also help improve your MG symptoms.
- Jodi, Team Member
I and many others were also utterly clueless about what Myasthenia gravis was when we were diagnosed. Have you considered treatments other than mestinon to help control your ocular MG symptoms of the eyes? Many others experience too bad of side effects of mestinon to continue with it. Prednisone and immunosuppressants are typically next to try for MG. Do you know if you are positive for MuSK, LRP4, AChR antibodies, or seronegative, https://myasthenia-gravis.com/causes?
- Jodi, Team Member
If you are looking into treatment options to control the eyes, I would first confirm with your doctor if you have been tested for those three antibodies. If not, I would go ahead and do that, https://myasthenia-gravis.com/blood-tests. Sometimes blood tests are lost, or an individual is diagnosed with MG without verifying the type. The type of MG antibody you have becomes important when considering treatment because they tend to be designed or work better for those with specific antibodies present.
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Eculizumab (brand name Soliris®), Azathioprine (brand names Azasan®, Imuran®), Mycophenolate mofetil (brand name Cellcept®), Vyvgart™ (efgartigimod) are common treatments that get good reviews by those with AChR antibodies.
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Rituximab is often successful for those with MuSK antibodies.
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LRP4 antibodies are the least common antibody present with MG. Even having MG with no antibodies showing is more common. The treatments used for AChR and MuSK are used for individuals with LRP4 antibodies.
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Plasma exchange (PLEX), IVIG, Rituximab, Imuran, Prednisone, and CellCept, and mestinon have been reported by those with seronegative MG (positive for no MG antibodies) to yield positive results for some time.
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This is a partial list of treatments for those MG types, not comprehensive, and there are more options out there, https://myasthenia-gravis.com/treatment
- Jodi, Team MemberYou have been so much help. I saw my Rheumatologist and he spent over an hour explaining explaining everything to me. I have a much clearer understanding of MG now and see my nuero ophthalogist on the 31st. My rheumatologist gave me a list of possible drugs to take along with my Atrema injections. He feels the doctor will probably start with steroids and possibly something else and see how things go. I have a list of immune suppresent that are OK along with Atrema. With your great help I'm feeling much better about my situation. Its so great that someone takes the time to be so understanding and helpful.
