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...

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Still very frustrated

Kc17
Kc17

I am through a issue where I'm still not diagnosed. When I was first diagnosed and December of 2019 I was happy to finally have a answer to my health issues. But then I had to take several test e m g. And the antibody test which both said I do not have ocular Myasthenia or myasthenia gravis. But I saw an optometrist when I was diagnosed that guarantees I do have ocular Myasthenia. I got very discouraged and stopped going to the doctor's due to all of the roller coaster rides doctors telling me I do and do not have mg.

Rhanson
Rhanson
HI
Hope the new year brings you better results.

What are the symptoms you have? Have any treatments for MG been tried? Did they help?

I don't think our goal is to get a diagnosis of MG, but to find out what is wrong, what is causing our symptoms and so it may be time to try your doctor again with a carefully written down list of symptoms, when they occur and what effect they are having on your life -- and let them start over.

If your doctor says your symptoms are not MG, then you need to push to get him/her to figure out what is wrong. Saying not MG is not a solution even if it would be correct. And, as many folks have found out, MG sometimes does not show up on the tests.

Good Luck
Russ
annkemp
annkemp
That is too bad. I have heard of this before. I would ask my general doc to prescribe some mestinon and see if that helps. If it helps and also then I would go to a major hospital and talk to a neurologist who specializes in MG or other issues And go from there. I agree with Russ too.
My eye doc was the first one who mentioned MG to me.
Take care
Speechie
Speechie
I had the opposite experience when I went first to my optometrist and then an ophthalmologist. Despite ptosis, all I got was “your MRI was negative for MS. Come back next year for your annual eye exam.” It’s sometimes hard to find help. I would suggest a university or MDA center which is where I went for my definitive diagnosis. The neurologist I saw (which took months without help from my primary doc, ENT or eye doc) was first to suggest MG. He started me on mestinon despite negative blood work and sent me to university hospital for second opinion and more definitive diagnosis. I’m seronegative with what my docs call classic MG symptoms. Good luck with diagnosis and treatment.
InvisableMan
InvisableMan
Good Morning KC17. In 2017, after 4 years of dredging through the medical system, I was formally diagnosed with Ocular and General MG, I had previously been to ENT Specialist, Opthomologist and a GP who ordered hearing tests for balance issues, Sent me to a physical therapist because of leg stiffness, ordered EMG's, antibody screens and eye examinations for my drooping eyes, and they all claimed that I did not have MG. I then found a Neuromuscular Specialist(Neurologist) who did a thorough detailed examination and ordered a series of Acetocolyene Marker blood tests that lead to my MG Diagnosis and on-going treatment It took me 4 years to find a competent Specialist who even had any idea about MG. Try not to be discouraged and look to at Neuromuscular Specialist to do a thorough examination. You can find them at major Healthcare Institutions, Cleaveland Clinic, Ohio, Mayo Clinic Minnesotta, University of Pennsyvania medical center in Hersey, Duke University in North Carolina and where I have chosen to go, Weill Cornell Medical Center in New york City. Good luck to you and hang in there. With the right Specialist I am confident that you will get your answers.