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...
Went for routine eye exam to get new specs. Doc told me they have "new" test and are doing away
with dilation with the drops etc. New test is "bio map" which is a lazer image = real cool.
anyways i was chit chatting with him about my neuropathy in my feet and was telling him with
all the meds ive taken over the years im concerned i have med induced diabetes or at least
some sort of pre diabetes. I was surprised when he said he should be able to see with this bio map.
long story short he said looking good in the diabetes suspicion = leaving me to conclude my
neuro doc was right (again) its damage from long term MG etc. The eye doc showed me some other
patients maps who had diabetes and some other conditions i was not aware the test can see
for comparison etc.
ex: upon further research of this bio mapping testing i read that since the image clearly shows
in great detail eye blood vessels, arteries, veins, nerves including of course the optic nerve.
the condition of these nerves and vessels simply reflects what is going on in other parts of the body
such as macular degeneration, hypertension, stroke risk,heart disease,diabetes, ocular melinomas and glaucoma.
it only added $ 40 to the exam. i strongly recommend this if/when next visit to your eye doc if they have it.
davy
for the first 2 yrs after DX I was riding 100mg pred a day until
cell cept kicked in and could ween off the pred - but the cept took almost 18 months to take hold - so I was at 100+ a day of pred for about 2 yrs then when I started the cell cept I started backing off the pred - that took a good year till I was down to 2omg then docs still wanted me to supplement the cept for another year...so I was on pred for a
good 3 yrs at least. flash forward to now aabout 17 yrs later I have 2 tiny cataracts he said onb a scale of 1- 10 they are a 2. I stopped the pyrido and mestinons about 4 yrs after Dx which was when cept took over my regiment. then after
feeling pretty good with the "new normal" I figured I could
back off and or stop my cept - big mistake ! my error in thinking was if I needed to get back on brd with daily meds
I would just pick up where I left off with my cept dosage.
WRONG I did not realize I would have to basically get my body to reaquire the cell cepts results. which meant back on the prednisone train heavy dosage. which only took 6 months this time. (originally it took cept about 18 months before it started working - I was getting discouraged and almost ready to give up on cept after 15 months. Doc asked me what I wanted to do- options were try Imuran or something else etc - cant stay on roids forever. anyways that was about 5 yrs ago. now im back to halving my cept dose now taking 1000mg cell cept used to take 2000mg per day. some weeks Ill 15mg pred a day for a week or two then back out of them. With this corona virus im rethinking my strategy with all my Docs.
davy
Now if I can find the right clip on lens for my cell phone I should be able to do it as a selfie ;-)
My use of prednisone sped up cataract formation according to my eye surgeon who removed them and put in astigmatism corrected lenses so I get by without glasses for the first time since age 12 except for cheap readers.
The Mayo Clinic website said that the retinal mapping was useful for folks with complicated eye issues. So I suppose that covers many of us.
Here is a do it yourself way of seeing your own retina. I have noticed under the right conditions one can see it and this explains how.
https://www.exploratorium.edu/snacks/seeing-your-retina