[Rocky]

I am an 81 year old male and first noticed double vision in late May 2024 while playing golf. I made an appointment with my regular ophthalmologist who also noted some droopy eyelid issues. I had a brain MRI as had a fall a short time ago which did not indicate a problem. We discussed Myasthenia Gravis which I was familiar with as my wife was diagnosed with ocular MG seven years ago. In mid June I had the blood test for MG which came back positive on July 3, 2024

I was fortunate in being able to find an ocular neurologist who I met with on July 18, 2024. At this time there were no other noticeable symptoms. Mestinon was prescribed at four 60mg per day. This significantly cleared up the double vision within a few weeks.

On July 24, 2024 I met with a Neuromuscular specialist. At this time I still had only the ocular issues. The doctor started me on Cellcept, 1000mg in morning and 500mg at night. I also had a CT scan of the thymus which came back with no issues. Starting in mid August several other MG symptoms became very noticeable and concerning. These included difficulty with walking and balance, Dropped Head Syndrome where chin lowers to chest while walking, significant pain along the entire spinal column up into the neck, breathing issues when lying down, and general low energy. These symptoms were really debilitating and I could barely walk 100 feet.

The neuro doctor started me on Prednisone 20mg daily, a week of IVIg infusions followed by monthly infusions through January 2025, and authorized physical therapy on the back and neck. The combination of the above resulted in rapid improvement such that in October 2024 I was able to play golf for the first time in over three months. Over the past several months I have reduced the Prednisone to 2.5mg per day and continued with the Mestinon and Cellcept dosages. In my opinion, one of the major factors in where I am today is back in July I was able to recognize the problem was MG and was able to receive excellent health care from both ocular and muscolar neuologists.

Right now I feel unbelievably fortunate that most of my symptoms are fairly mild particularly after reading many of the heartbreaking stories of others with MG. As with any major disease, you are never really sure if or when the symptoms will recur. (I know this well as my wife is suffering with breast cancer now after having won the battle 22 years ago.) So we keep our faith in God and try to make the best of every day we have together and give support to others.

[Rocky]

I agree with DogMom. There are sites to express your political issues; this site is not one of them.

[Rocky]

I have also been dealing with the diagnosis of generalized Myasthenia Gravis for the past six months. I was initially concerned with adding my comments to this forum as others have been suffering with MG for a much longer period of time and oftentimes with much more serious symptoms. However, I have found that experiences you may have might actually help someone else.

There is one fairly unusual circumstance with my MG diagnosis. My wife for over 58 years was diagnosed with ocular MG about seven years ago. We deal with four neurologists who stated they have never had a married couple who both have MG. I thought they might want to explore this deeper but it did not seem to be anything more then an unusual fact and we moved on.

I am an 81 year old male; medical conditions are sleep apnea, AFIB, blood pressure, cholesterol, all of which are under control; active golfer. Prior to the onset of MG symptoms, I had lost 35 pounds from better diet significantly reducing alcohol, sweets, carbs, etc. and had not felt this good in a long time.

In May 24, 2024, I started experiencing double vision. I visited an ophthalmologist on June 7 and she thought the problem was either MG or possibly a brain issue from a fall. I did have two falls, one in 2/23 and one a few days before double vision started. A brain MRI was done on 6/12/24 and there were no problems noted. On 6/20/24 I had the blood test for MG and the results were received on 7/3/24 with a 50 for the ARB Antibody.

On 7/18/24, I met with an Ocular Neurologist who prescribed Mestinon, four daily of 60mg. This cleared up the double vision and droopy eyelids in a few weeks. Other symptoms also started to appear primarily in the spine continuing up into the neck. It was becoming more difficult to walk in a full upright position as I seemed to be hunched over. I continued to play golf three times a week until July when the back pain became too severe.

On 7/24/24, I met with the Muscular Neurologist who confirmed the generallzed MG diagnosis. He prescribed CellCept starting at 500mg twice daily and increased later to 1000mg morning and 500 evening. On 7/29/24, I had the CT scan of the thymus which showed no problem. In August, the ocular issues were much improved but the back and neck pain were much worse. Also had difficulty breathing under exertion, standing erect, laying flat on a bed, unable to walk even moderate distances, could not hold head upright when walking and balance issues. In an internet search, I came across Dropped Head Syndrome which pretty much mirrored the symptoms I was suffering. The Neurologist started me on Prednisone 20mg on 9/3/24 and I also started deep tissue physical therapy on the back, shoulders and neck. The spine issues improved significantly in September and I started playing golf again in October. I also started the IVIg infusions with daily infusions for five days followed by monthly infusions.

As of the end of November 2024, my noticeable symptoms are twitching eyelids, a feeling of heavy eyelids, raspy/weak voice, lower stamina, insomnia. I have reduced the Prednisone to 2.5mg daily. Still taking the Mestinon and Cellcept prescriptions and the monthly IVIg infusions. I feel I also have been extremely fortunate in finding neurologists who are extremely knowledgeable in MG and are very reachable and approachable whenever needed. My wife having MG previously was somewhat fortunate in that I got into the same neurology practice. I know from reading many of the comments, medical expertise in MG can be hard to find.

[Rocky]

Thanks to all who responded to my initial posting. Having recently been diagnosed it is comforting to note that there are so many caring people out there. I met with my neurologist and he attributed the urinary issues largely to Mestinon. He prescribed Glycopyrrolate to help alleviate the symptoms. Hopefully it will be effective and not come with its own side effect problems. Has anyone had any experience with this drug? Thanks.