My neurologist and myself have known for over 10 years that I have some "unknown" or "Un-diagnosed" neurological condition. His first choice was MS, but after numerous MRI's that has been ruled out. I have been dx'd with fibromyalgia from my Rheumotologist, but he says my neuro. problems are my biggest problem. I have fatigue, leg, arm weakness, cognitive skills declined, pain, which all these can be the fibro, but as of six weeks ago I developed a new symptom. My right eye droops. It feels like it's closing. At first I thought it was a twitch, but it progressed. Also, at first you couldn't see a twitch or my eye lid close, but now you can. This happens as much as fifteen times a day. It happens when I first get out of bed in the morning. I noticed this because I thought maybe my eyes were tired or over worked. I wear glasses and have yearly exams. The last one was unremarkable. In the past couple weeks I have become short of breath and wheeze. My dr. gave me antibiotics and an inhaler two weeks ago, but I can't tell that they helped. I am so fatigued that I can barely cope. I've been this way before and contributed it to a fibro. flare. Several years ago my neuro. did a blood test for MG and it was negative. My question is, could this eye lid thing be MG? Has anyone else experienced this?

Hi Myla,

Yes, it most certainly could be. I would call the neuro right away, if you haven't done so already. He may want to do additional testing and may want you to see an opthamologist or better yet, a neuro opthamologist. If he dosen't, ask him to refer you to one. I see one for just the syptoms you describe. Please check back and let us know how you are doing.

Pat

That was one of my first symptoms of MG !
Mary

Could be a sign of bell's palsy or Ramsey Hunt sydrome caused by a zoster virus.

Ask the doc to try a trial of 10 days of antivirals and if you improve it could be am indication of it.

Hello and welcome to Neurotalk! You are going to LOVE it HERE!

Your symptoms do sound like MG - a lot like it. It took a long time b/4 I was finally dx'ed...hopefully you will get the answers you need soon in order to feel better!

With something as serious as MG getting a 2nd or 3rd opinion is a good idea!

If you ever feel like you can't breathe, call 911 IMMEDIATELY - or have a "code" call set up with family members - push on the buttons so they know you need help - better safe than sorry I always say!

Can't wait to hear more from you!

Hang in there!
ERin

Me too Mary.

Myla, Hi. Droopy eyelids can be from lots of different things. Look up "ptosis causes" on Google.

Do you notice if you have double or blurry vision? Are both eyelids drooping? If you do what's called an upward gaze where you keep your head still but just look up with your eyes, does it get worse? MG ptosis gets worse with upward gaze.

Can you get your ophthalmologist or primary doc to refer you to a neuro-ophthalmologist? They can do tests to figure out what might be causing it.

Definitely get the Acetylcholine Receptor antibodies (binding, modulating and blocking) done again, plus the MuSk antbody test. A lot can change in TEN YEARS!!!

Wheezing is a sign of inflammation in the lungs and could be asthma or bronchitis. Do you have a pulmonologist or allergist you could see? You really need a specialist to see you.

Wheezing is not a symptom of MG, but lots of that other stuff is!!! Any weakness of skeletal muscles that gets worse after activity and relatively better with rest is a sign of MG.

Just get a neuro-ophth. to help. And ask your neuro for more tests, like a SFEMG too! Ten years without answers is crazy. Have they tested you for polymyositis (creatinine phosphokinase blood test)?

I hope you can get some answers soon.

Annie

Hi Myla, and Welcome.

Shelley mentioned the viral aspect. I have learned first hand that the Herpes viruses, including the zoster and "cold sore" forms can cause many of the MS symptoms if they get into the central nervous system. They have looked for MS on me for 14 years with no luck. I do have MG as well, so some of the weakness and fatigue come from that, but I just got the Rx for the anti-virals and it has decreased the weakness to very minimal after being severe enough to put me on a recliner for the last 3 1/2 months! Same with the fatigue and my eye problems (focusing). I did not have a droopy eye, but don't with my MG either.

See if you can get a doc to at least run the blood work for the zoster and herpes anti bodies. If your titres are high, then perhaps you can get the trial of the anti-virals if they won't give them to you otherwise. You definetly need to get more testing done in both the MG and viral areas. Good Luck. I hope your additional problem turns out, like mine, to be a virus that you can take a relatively safe drug for and get feeling better super fast!

Myla, what you described with your eyes is exactly what happened with me to lead me to find out I have MG.