I don't have ptosis. However I suffer from double and blurred vision. In fact, these were my first symptoms which started 8 years ago (I was finally diagnosed a few weeks ago).
When I would attempt to drink an "adult beverage" after only a few sips, I would have dbl vision and I would stumble around like a drunk. In seeking a dx, I would share this with various Drs and I would get the 'eye roll'
Thanks Bipedal! Till seeing your post, I thought I was nuts!

I guess it makes sense that alcohol would make muscle weakness apparent very quickly. I'm glad I'm not the only one. It definitely stops you over indulging in social situations.

Wow Maggie - 8 years is a really long time to wait for a diagnosis! How bad did your symptoms get and how did they eventually realise that it was MG? When did you first go to a doctor?

Thanks for your reply on the hypothyroid ptosis Limpy. Do you attribute your ptosis to thyroid issues or the myasthenia? Is there any way of telling the difference?

I'd like to clarify a couple of things, in an effort to be helpful.

A thyroid condition can cause ptosis, but not fatigable ptosis. Yes, the ptosis can be variable, along with any changes in the thyroid condition, but that is not the same as fatigable.

Muscles are fatigable in MG because we run out of the acetylcholine that makes them work. That might seem like an obvious statement, but there are times that even doctors lose sight of that simple truth. Sort of similar to when a battery runs out and can't run your cell phone or other devices.

And there are other signs such as Cogan's lid twitch and enhanced ptosis that can differentiate MG from other conditions, in addition to the fatigability. LEMS patients can also have enhanced ptosis. That's why seeing a neuro-ophthalmologist is so helpful if you suspect you have MG.

http://www.ncbi.nlm.nih.gov/pubmed/21654336

http://archneur.jamanetwork.com/arti...ticleid=580026

If an MG patient has double vision, they do indeed have ptosis. It might not be noticeable, but "uneven" muscle strength of intraocular and extraocular (you can't see those) muscles, not to mention facial muscles, is what causes double vision in MG. If you close one eye and the double vision goes away, that's one more sign that there is uneven focusing of the eyes!

Any drug that relaxes the muscles, as alcohol does, can make MG worse. Meditation takes the edge off just as well as alcohol.

And in order to get the good mood hormones such as endorphins and oxytocin going in the body, you need to move/exercise. Since MG sometimes limits the ability of the body to exercise, you can feel more depressed with MG. Although, here are some ways to increase oxytocin without exercising.

http://www.psychologytoday.com/blog/...raise-oxytocin

But don't do #6 on her list, unless you know you'll be okay. I wouldn't exactly recommend #4 either. And a lot of you might not appreciate #3, since you have cats.

Eyejoin, As long as your doctor(s) is being logical and thorough, there's no reason they can't diagnose what is going on. The most important thing is to take care of yourself right now. Try not to worry!

Annie

Yes, 8 years is a long time, however, many here waited as long or longer for their dx.
My symptoms started 8 years ago after a head injury. At first, my symptoms were ocular only. Within a year, I started having muscle weakness in my arms and legs. Over time, all symptoms worsened in freq. and severity. My neuro thought all symptoms stemmed from the head injury, totally overlooking the possibility of MG. Last fall, my neuro opthamologist, within a 10 min. exam, suggested that I had MG. Within weeks, my symptoms worsened to the degree that I could barely walk. I had blurred or dbl vision most of the time. My balance and coordination were so bad I would freq fall into walls. Then, Last November, I had surgery for a small bowel obstruction (my surgeon actually believes that the obstruction was caused by MG) during that surgery, I quit breathing. Because I had forewarned the Drs that I had a tentative dx of MG, they immed began treating me with mestinon, high doses of prednisone and a round of IVIG.
I now had a group of Drs on my side, one of whom was instrumental in getting me onto the schedule of a local neurologist. So far in testing I'm seronegative.
However, both my neurologist and neuromuscular dr have confirmed a dx of MG
My current treatment is mestinon timespan. I'm still working on the dosage. I see my neurologist next week so hopefully I'll have more to report after that visit
Good luck to you. You've found a great source of information within this forum.
I know they've helped me immensely
Jan

@ Maggie. That's a pretty dramatic way to get diagnosed. I'm glad you finally got onto the right treatment and diagnosis.

Thanks for the information on ptosis Annie. I think if the neurologist finds nothing I might go get it checked by a neuro-opthamologist to see if they can shed any light on it.

Interesting link. I've also noticed when I've tried the upgaze in the mirror my better eye does seem to tire and close much quicker than the one that normally has more severe and constant ptosis.

Simply pull up on the droopy eyelid for ten seconds. Then watch how the eyelids play see seesaw.

Hiya,

I am also based in the Uk so maybe I will be able to help a little. Have you been in contact with
https://www.mga-charity.org/
they are the UK charity for MG. I rang them years ago and they were very helpful. I was initially diagnosed with ocular MG and then generalised and then that diagnosis was removed. The charity told me that no dr should be diagnosing purely ocular MG within the first two years of diagnosis as most people present with eye problems and then it progresses over the two years.

There is a specialist MG centre not far from you in Oxford - John Radcliffe hospital. There are specialist neuro ophthalmologists and neurologists etc. My case is difficult the ophthalmologist there told me I had MG only for his boss the guy that is the chief UK expert over ruled him!

I am negative on all tests except the ice pack test. Having researched this for the last 7 years I know MG is the only disease / condition where the ptosis resolves when ice is applied. No one can explain to me why mine resolves if it isn't MG! But I am past caring now as I have too many other medical issues going on.

You have the right to a second opinion and you have the right to ask to see a specialist any where within the UK - as long as your GP agrees to your referral.

If you want the name of the guy I saw then please private message me and I will supply it.

I hope you get some answers soon.

Rach x

Hi everyone,

Thanks for all the replies and support. I haven't checked this forum for a while but I thought I'd post an update on my situation in case it helps someone else.

I had all the tests for Myasthenia and had to wait for the results over easter.

During the easter break everything suddenly seemed to go downhill. I went from having minor episodes of weakness to suddenly experiencing full blown attack of flaccid paralysis in my arms and legs that would just hit out of no where.

The first few occurred during a work and everyone thought I was having a stroke. It also affected my eyelids and made the ptosis occur.

I thought it was just untreated myasthenia. I emailed my neurologist when the situation didn't improve after two days. He emailed back and said that the blood tests, EMG and SFEMg showed no signs of myasthenia and I should wait to next consultation and we could discuss what else the problem might be.

I mentally flipped out and then jumped on google and looked up episodes of paralysis.

I found out about periodic paralysis and thyrotoxic periodic paralysis which is a rare condition that can occur in asians who become hyperthyroid and gone thyrotoxic. Although it usually only happens to asian men and usually isn't seen outside of asian countries - so I managed to fall into that annoying 0.01% category.

Finally everything made sense. I'd been having attacks of paralysis in my arms for the past year whilst lying in bed. I always wrote it off as sleep paralysis - even though I was fully awake each time and each episodes lasted over ten minutes.

All the weakness I've experienced during the day had been abortive attacks which haven't progressed to full blown paralysis and the eyelids have been equally affected accounting for all the fluctuating ptosis over the past two years.

Frustrating my thyroid is only the tiniest bit elevated and they can't understand why I'm so symptomatic and have gone thyrotoxic. I anticipate having the same problems whilst chasing down the thyroid problem when I finally get to see the endocrinologist.

My neurologist is insisting that I have another specific EMG test to confirm the diagnosis of periodic paralysis which I'm having trouble obtaining because nobody performs this test as the condition is rare. I've been like this for three weeks now and have missed a lot of work.

I'm hoping that I can sort out my thyroid and put this experience behind me. But frustratingly my neuro is suggesting I might have the inherited version of this disorder because my thyroid looks fine despite all the hyperthyroid symptoms. (Agggh.... I just wanted to punch him at that point)

He also seems to think I need a diagnosis before treatment. The only way to stop this happening is for them to get my thyroid back to the perfect level and treat it with beta blockers in the meantime.

The McManus test for periodic paralysis only has only an 80% pick up rate and that makes me nervous. Why do they seem to make it all so difficult? The symptoms all add up - It seems like a no brainer to me.

Special thoughts go out to those of you who are still chasing a diagnosis. Especially those of you who are being disbelieved, dismissed or having diagnosis revoked. I can truly sympathise with what you must all experience on a daily basis and how debilitating neuromuscular illnesses are.

It's a really horrible place to be and I do hope that things get better and the picture becomes clearer for a final diagnosis.

Thanks for all the support. It was nice to speak to people in the same drifting life boat

Thanks for sharing your story Rach. I'm so glad you've managed to get treatment and it's helping with the symptoms and the ptosis. Doctors aways seem to dismiss how bothersome a ptosis can be and how self conscious it can make you feel on a day to day level. It's a good thing you didn't go down the surgery route which is what medical professionals always suggest for unexplained ptosis.

I'll check out your blog. I did look at the Mga-charity website whilst looking for information and it seems like a great organisation.

I'm still unsure why my ptosis reacts so well to ice. I have really bad eyelid myotonia in both eyes due to either the periodic paralysis or being hyperthyroid or both - maybe I don't know. But I'm hoping it's all just a part of the PP puzzle.

Part of me has wondered if I have ocular MG on top of the PP. If I confirm the PP diagnosis and get treated with Beta Blockers and it makes the ptosis worse than that might provide some answers.

After reading you post about your success with the ice test, I tried it and it didn't seem to do anything for my annoying <ptosis> droopy eye brow and droopy eye lid. :-( I cringe, when people want to take my photo :-/
I was thinking, if this works, this would be great for family photos,------ "wait, hold that picture taking, I need to get my Icepack!" {{{LMAO}}} :-)


I used a regular icepack from my freezer, and gently pressed it on the right side of my face/ eye area for 3 minutes.

Do you know the specifics of the "clinical" icepack tests that Nueros Do? --- do you hold the icepack over the whole face or only where the ptosis is presenting? --how long are you "supposed" to leave the icepack on your face?