New to site
 

I am 77 and male, retired engineer, suffered neuropathy in both feet for over 25 years, tried everything including back surgery. Nothing worked. About 3 years ago while driving I experienced double vision on short trip to town. Closing one eye would correct. After stopping in town the vision problem went away and did not reoccur on the trip home. A few months later the identical thing occurred. The third event on the trip to town I was in a sharp turn exiting a major hwy, I passed out, ran off road. I recovered immediately and my wife drove me home.
I went to my family practice and explained what happened, she said it was probably a TIA! I went to my cardiologist and he said I did not have TIA and that was probably a neurological problem. I did not know what I should do! That was late in 2015 and my wife was was diagnosed with breast cancer a short time later and spent most of 2016 getting her recovered. In January 2017, I experienced a severe back cramp and taken to ER. After 9 hours the cramps subsided and the doctor released me with no diagnosis. In March I experienced blurred and double vision for a short period and immediately went to an eye doctor for a complete exam, no vision problem could be found. In May driving to church to pickup wife again I had double vision as soon as the car started moving, closed one eye and parked in the church parking lot. I was immediately thirsty and had a bottle of water setting in drivers seat with my feet on ground and suddenly lost neck control and my head was between my legs. I could not stand and was lifted into back seat, the light was blinding until I got sunglasses.
My wife took me home and I was helped into my house into a recliner. In 2 hours I was feeling better but very tired. Went to family practice the next day, explained all this in detail. I got a blank stare from the nurse practitioner! I told her my son, (a PA) thought I had MG. After several minutes of computer research she thought I needed further test, chest MRI, brain scan, and after thinking I had lung cancer a complete PET scan. Nothing was abnormal and she sent my file to a neurologist here in Austin. They called and said the doctor could see me in 2 months! That was a month ago. Last week I had a short period of dropping eye lid? I have been fatigued most every day since the Sunday event.
Sorry for the length, very concerned!

Hi, Texasron! Can we call you Ron? Welcome to the forum!

Has anyone checked your vitamin B12 level? Thyroid? Celiac disease? Vitamin D?

If you do have those checked, you need to get copies of the results. Some people have a neuropathy even when a B12 level is in the normal range. The test reflects what is circulating and not necessarily what is getting to the tissues!

When you have double vision (DV), does it go away if you close one eye? That's typical of binocular DV, seen in MG.

Has anyone done the Acetylcholine Receptor Binding and Modulating tests? The MG MuSK test? If so, did you get a copy of results?

That sort of fatigable weakness that you describe is the hallmark of MG. A brain MRI will show nothing in MG. A chest CT sometimes shows either thymic hyperplasia or a tumor (not common). Has anyone done a chest CT?

You can have more than one thing at a time. MG doesn't cause a neuropathy. It is quite possible that you do have MG. If you EVER are unable to move, breathe, or swallow, you need to dial 911. Make sure they know you might have MG. Any ER can run the basic MG antibody tests! Being that weak is dangerous, no matter the cause.

In an ER, or a doctor's office, they can check your oxygen saturation (O2), arterial blood gas, and pulse. When MG becomes worse, the heart works harder to provide oxygen to the body (O2 is reduced). When the heart can't accomplish that, the O2 tanks.

Seeing a pulmonologist may be revealing as well. They can do breathing tests specific to MG (MIP and MEP). But you really need an MG expert for evaluation. Anyone know any in Texas? I'm assuming you're from Texas. Are you?

Stay out of the heat!!! If you do have MG, the heat makes the disease become rapidly worse. If you become too hot, cool down immediately and then rest or sleep. Are you better after a nap or sleeping? One of the first signs of MG is needing to nap. Of course, that's also a sign of a B12 deficiency and other diseases.

MG experts say that if no one thinks about MG, diagnosing a patient takes a long time. Once they think of the disease, it usually takes days. Good for your son for thinking of MG. Now, make sure they do the right tests and get you some help if you have MG.

Please take it very easy in the meantime!!! What else can we help with?

Annie