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...
Hi everyone - I have been wanting to ask this for a while, but even now I am at a loss as to how to accurately describe it all (!) but I am finally going to try! So brace yourselves because if you didn't think I was crazy after my singing question....you might just after this one! lol!!
I have a problem with my eyes/vision where I feel as though I can't see properly - like I'm straining and not seeing things properly and have to really try to focus even though nothing really seems to be wrong with my vision? (See what I mean? Odd!) I do have blurring vision (predominantly in my right eye) which gets worse as the day progresses and things get blurry and fuzzy during the evening but there are times where I get this sensation and my vision seems relatively clear?? I do have focal migraines (with wavy, flashing lights) very occasionally but this doesn't really fit with those and to be honest - I have put this down to anxiety for years now?!
I do get what I think are tension type headaches which I put down to my eyes struggling later in the day and my neck struggling as my head gets heavier!! If I take the weight off my neck and lie down it usually resolves the headache pretty quickly!! I do have mild drooping of my eyelids, again predominantly the right but nothing as dramatic as some of you have to deal with.
To add to this, if I am reading or scanning a room etc - anything that involves a sweeping side to side movement of my eyes I can get a little head spin as if everything is trying to catch up with itself! This is usually if I have been doing a lot of reading/computer work or I'm tired.
Can anyone shed any light on this or does anyone have anything similar??
Thanks everyone...I really don't mind if you just want to take a vote on whether I can add this to the crazy list or not! lol!!
Eve.x
I have a problem with my eyes/vision where I feel as though I can't see properly - like I'm straining and not seeing things properly and have to really try to focus even though nothing really seems to be wrong with my vision? (See what I mean? Odd!) I do have blurring vision (predominantly in my right eye) which gets worse as the day progresses and things get blurry and fuzzy during the evening but there are times where I get this sensation and my vision seems relatively clear?? I do have focal migraines (with wavy, flashing lights) very occasionally but this doesn't really fit with those and to be honest - I have put this down to anxiety for years now?!
I do get what I think are tension type headaches which I put down to my eyes struggling later in the day and my neck struggling as my head gets heavier!! If I take the weight off my neck and lie down it usually resolves the headache pretty quickly!! I do have mild drooping of my eyelids, again predominantly the right but nothing as dramatic as some of you have to deal with.
To add to this, if I am reading or scanning a room etc - anything that involves a sweeping side to side movement of my eyes I can get a little head spin as if everything is trying to catch up with itself! This is usually if I have been doing a lot of reading/computer work or I'm tired.
Can anyone shed any light on this or does anyone have anything similar??
Thanks everyone...I really don't mind if you just want to take a vote on whether I can add this to the crazy list or not! lol!!
Eve.x
Weird vision problems, probably my 1st MG symptoms. For years lot's of blurry/fuzzy vision, ghosting, halos, double vision, eye strain, something I termed my "personal little earthquake" (things in my field of vision would appear to jump/move about for just a few seconds). It's ironic as I have worked in eye care for 20 years. Neither optometrists or ophthalmologists could find anything other than a change in RX, dry eyes, dry contacts. Working up patients doing visual acuities (eye chart), I knew my vision fluctuated throughout the day. I preferred no correction followed by mono-vision contacts. One day I overheard a patient say new glasses made everything too clear & had an ah-ha moment. I really preferred my fuzzy world over a too clear world. After taking Mestinon for over a year I think I know why. When the Mestinon is working well & am well rested my vision is clearer than ever & I really enjoy looking through my glasses. When I start having vision problems, I believe my glasses magnify the ghosting, shadows, doubling, halos & my mind doesn't like it.
I do see a neuro-ophtho every 6 months. He told me that double vision & droopy lids equal evaluation for MG, no brainer. A side note, he only sees MG patients late in the day when he finds symptoms more like to be exhibited. Unfortunately he will not treat the MG as I have generalized & bulbar symptoms & prefers to leave TX to the neuro-muscular doc.
Opinion on neuro-muscular doc is still on-going. He has warned me as to signs of crisis, meds I shouldn't take & followed me through surgery last Spring. But the last time I saw him, I explained about how sometimes I may see 1 moon or 2 moons or 4 moons (2 side by side or 2 one over the other or sometimes all 4), what I noticed was that glazed over look when you realize they are thinking "crazy lady" and his only reply was that's an interesting story.
So Eve my vote is goes to MG symptoms....not the crazy list.
Lyn
PS RE: Singing....used to sing all the time in the car or at home. No longer able to. Been following this saying, "If you can sing, sing; If you can't sing, hum; If you can't hum, listen" ... doing lot's of listening now ;)
Thank you for your advice and your stories, I hope my tests will give some answers otherwise a Neuro-opthalmologist might be a good plan B....and Lyn I have seen the glazed over "crazy lady" look many times! lol
Thanks again everyone!x