[pingpongman]

My saga begins with waking up one day with double vision I had a
visit to an Ophthalmologist who said I had dry eyes and use these eye
drops. No change. Next came a drooping eyelid and a trip to Urgent
care, a cat scan and no diagnosis. Next up, a Neurologist...blood
work, MRIs, no diagnosis…. another Cat scan (chest). No diagnosis! ...Given a trial dosage of Mestinon..a little improvement in droopy eye Next up, a Neuro-Ophthamologist..at last...he says "if it is not Myastenia Gravis, I will eat my hat"...doubles dosage of Mestinon...back to Neuro, nerve stimulation test...not sure of diagnosis he said he didn’t see anything..so now I’m on to ALS clinic that specializes in neuro-muscular conditions including Myasthenia. Still have double vision and drooping eyelid.

Yesterday my sister talked with family friend (Neuro-Surgeon) and his advice was to go straight to Duke and indicated speed was very important. He even gave us the name of doctor to see.

I would love to hear your thoughts and opinions. Oh I am a 70-year-old male. Very active and play table tennis 4 times a week.
Thanks,
Mike

[AnnieB3]

Hi, Mike and welcome.

You certainly do want an expert evaluating you. Some regular neuros may not be aware of all of the aspects of myasthenia. For example, did you have your RNS test while on Mestinon? That can alter the results, make them look normal when they wouldn't normally be so.

I don't know if you need to run to Duke in an urgent way but everyone needs and deserves a prompt diagnosis and treatment. If you can swallow, breathe and operate your other muscles well enough, it's not an emergency yet. If you do get noticeably weaker, you will need to consider going to urgent care or the ER.

Do you live in NC? UNC has a great MG expert: Dr. James Howard. Granted, he may not be taking new patients or may be hard to get in to see. Duke has a good neuromuscular program too.

So, I guess my advice would be to get set up with an MG expert and get FULLY evaluated. That would include the Acetylcholine Antibody panel (binding, modulating and blocking antibodies), the MuSK antibody, a SFEMG and maybe a redo of the RNS. If you end up having MG, then they would probably want to do a chest CT to look at your thymus to see if you have hyperplasia or a thymoma (cancer). Some people do have a thymoma but not a lot.

I hope you and your doctors can figure out what is going on! That's great you are so active. 70 is young!

Annie

[KathyV]

Welcome Pingpongman,

That's exactly how I started out last July -- double vision then droopy eyelid. Luckily my optometrist sent me immediately to a nuero opthamologist who ordered the acetycholine receptor blood test. Bingo! I tested positive. Next it was to a neurologist who started me on Prednisone and Mestinon. Both symptoms improved almost immediately. He ordered a CT scan which showed a thymoma, so I had a thymectomy a couple months later. At the current time I'm only on Mestinon. I still have residual eye problems. but not nearly as bad as they were. At least I can drive. I'm a 58 year old female.

Hope you get some answers.

[pingpongman]

Thanks Annie and Kathy for your responses. I have had all those tests except SFEMG. I have heard that the ALS Center will likely want to do all these tests again. I guess that will be fine with me as long as we get some answers. I am going to the ALS Center on Tuesday if that doesn't pan out I guess I'm off to Duke. Again thanks so much, somehow this gives me comfort.
Mike

Originally Posted by AnnieB3

Hi, Mike and welcome.

You certainly do want an expert evaluating you. Some regular neuros may not be aware of all of the aspects of myasthenia. For example, did you have your RNS test while on Mestinon? That can alter the results, make them look normal when they wouldn't normally be so.

I don't know if you need to run to Duke in an urgent way but everyone needs and deserves a prompt diagnosis and treatment. If you can swallow, breathe and operate your other muscles well enough, it's not an emergency yet. If you do get noticeably weaker, you will need to consider going to urgent care or the ER.

Do you live in NC? UNC has a great MG expert: Dr. James Howard. Granted, he may not be taking new patients or may be hard to get in to see. Duke has a good neuromuscular program too.

So, I guess my advice would be to get set up with an MG expert and get FULLY evaluated. That would include the Acetylcholine Antibody panel (binding, modulating and blocking antibodies), the MuSK antibody, a SFEMG and maybe a redo of the RNS. If you end up having MG, then they would probably want to do a chest CT to look at your thymus to see if you have hyperplasia or a thymoma (cancer). Some people do have a thymoma but not a lot.

I hope you and your doctors can figure out what is going on! That's great you are so active. 70 is young!

Annie

[pingpongman]

Well I went to ALS Center in Charlotte today. They gave me about 2 hours of different muscle tests. I think they were setting a baseline to test in future looking for improvements. He also told me I had general MG not Ocular MG. He told me to continue my 60 mg of Mestinon 3xday. He then prescribed 180mg of slow release Mestinon at bedtime. He said there were many more drug treatments available but wants to start slow plus they took 12 vials of blood being sent to Mayo. Results will be back in 2 weeks. He wants to see if he can isolate the specific MG. He also wants to check for cancer before using other drugs. He was very interested that my Mom and 2 of her sisters had MG. So we will see how it goes. Doctor said I could see results in 2 weeks if the slow release helps. Thanks for all the thoughts and opinions. It helps knowing you aren’t alone in this battle.