Ocular myasthenia

[CDreamer]

Hi, I have no confirmed diagnosis yet as still awaiting tests but I am pretty sure I have ocular myasthenia. I am also a member of the AF (atrial fibrillation) community and found this forum an invaluable support system.

Is there anybody else out there who would like to share information?

I was diagnosed with AF about 8 years ago, now treated I have had no events for 4 months. I wonder if the AF had been masking symptoms of myasthenia for some time. Symptoms: got very tired reading about -3yrs; dry irritated eyes about-1yr; exercise intolerance, no matter how I tried to increase my stamina, I got muscle fatigue and fell into bed and slept for several hours after yoga or Pilates or any aerobic exercise but gentle exercise was normally ok, as long as not extended. Last Tuesday week developed sudden onset Ptosis (whilst driving, very scary) and had persistent double vision now for the last week so functioning is difficult. Much better in the morning than the evening. Had MRI scan, clear, CT scan, clear, no diabetes, thyroid normal, awaiting antibody blood tests, tested positive for the ice cube test (Mayo clinic rest) recommended by my chiropractor.

I had a look at the Myaware site and forum and I realise that compared to many my symptoms are minimal but wondered if anyone out there has/had similar and would like to share information?

Grateful for any input, thanks in advance, CDreamer

[EngMac]

I don't know anything about this problem but I do remember reading that statins given for cholesterol treatment cause problems with muscles. Also, if you look at some of the side effects of other medication that you are taking, you may find this to be one of those rare side effects. I have no proof but I suspect the longer a person is on a drug the more chance of the negative side effects. I hope you find a solution soon.

[CDreamer in reply to EngMac]

Thanks for replying EngMac, this is an autoimmune disease where the immune system create antibodies which destroy an essential neuro transmitter so messages from the brain don't get through to the muscles. Drugs do make it worse, eg anti arrhythmic drugs, bête blockers, which I am on for the AF, but don't think statins, which I have never taken. Eat apples instead, does the same job nAturally. Agree with entirely on the drugs and now feel between the devil and the deep blue sea re the above drugs. Bummer isn't it?

By the way this lot aren't nearly as responsive as the AF crowd, you are the only person answering and I know you from AF, but thanks so much for your response.

[Lesley-chard]

Hi

I've just joined the community. I'm also awaiting blood results. I wasn't expecting it to be so quiet here lol

Lesley

[CDreamer]

Hi Lesley, really pleased to hear from you, it is eerily quiet. Have you seen a neurologist yet!

[akshayjain]

I just had my blood test dictating as AhAcrh and found it to be on borderline 0.39

I constantly see double and triples too and eyes get irritated,agitated and a trickle sound comes on rotating the eyeball in any direction(mostly corner)

I am being given following drugs-

Distinon

Azoprine

Prednisolone Duspersible tabs.

Any kind of help will be very very usefull

Please

[CDreamer in reply to akshayjain]

Hi Sorry to hear that. What sort of help are you wanting?

I have been on Cellcept (mycophenalate) and Mestinon (pyridostigmine) to relieve symptoms. I was where you are now, last September, sudden onset of symptoms last June. I asked to be put on Cellcept because I read that it had good results for ocular Mg. it seems to work quite well for me and although I still have a small degree of ptosis the double vision is much better and only comes on when I have worked hard. General fatigue has improved and I seem to be stabilising.

My count was very high but that is no indication of how aggressive the symptoms can be,.

Have you been on the Myaware FB page? There is a lot more activity there.

Best wishes CD.