Occular Myasthenia gravis (MG)

Thanks for the info about getting on the meds as soon as possible.....Did you get the meds from your neurologist? I'm seeing my GP this afternoon and will ask him more questions about this disease. My eyes are really bothering me as I love to read and am having trouble focusing in on the print. Are there any kind of glasses that will help here?

Hi Scar, No I didn't get my meds from the Neurologist, On the day I got my Blood test back and saw what the reading was I went to my Doctor who phoned a neurologist in another City as we don't have one here, who said I needed to go into Hospital right away to start on the medication. Read Dec 31st info on @mylife above. As to the reading I was the same but have been told to wait until the Meds get into my system and they may help. Later on there is what is called a Prism the Optomitrist can fix into your lens if the eyes stay stable with trouble focusing. I found all the information on the internet before I even went to my doctor.

I'm wondering what your blood test showed that put you into the hospital so quickly. I saw my GP yesterday and he told me a blood test wouldn't show MG.....I will see my Neurologist tomorrow for the nerve test and will bring a copy of my blood work. My GP said that "IF" I have MG, it seems like a very mild case....is that possible? Along with my distorted vision, droopy eyelids, wobbly legs and a few other symptoms, what else could it be? Weird!

I think its to do with the Antibodies blocking the function of the protein that is involved in forming the nerve-muscular junction.
My Blood test, the reading of the nuerotransmitter called acetycholine receptor abs < 20.00 ( HIGH ) a normal reading is 0.00 to 0.44 (LOW) The longer you go without the meds that you need the worse the symptoms will get, and the longer it will take for the symptoms to subside, the Med. I'm on is suitable for me and for most people I think. The dosage will depend on how bad your symptoms are. I hope your Dr's get on to it quick. Cheers Margaret.

Hi Jolander
Are your only symptoms your eyes, that you say you have Occular Myasthenia gravis

Hi @mylife and @750scar78,

I’ve enjoyed reading the support and information you have shared and provided for each other on Connect. This is what Connect is about, and it's so great to see it in action. Thank you!

Mayo Clinic also has some very detailed care options for MG; here's some information which you may find helpful:
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/care-at-mayo-clinic/mac-20352044
I'm confident that @gretagean @lynnes @dschmidt and others will join this conversation and share their insights.

@mylife, may I ask what meds you've been prescribed? Mestinon seems to be the most common choice for MG. @750scar78, if you wish, please let us know if you have any questions after visiting with the neurologist. We look forward to getting to know both of you.

It started as only eye & maybe a little weakness & tired.I hade one crisis about 2 yrs ago after a cold. took Prredisone for 9 mos and was doing good till Nov2017. Lot of stress at that time & now I have blurred vision, my eyes get tired & hard to read. some neck & shoulder stiffness. Starting next week on IVIG to see if that helps.

Hi Jolander, did u read my initial info. Dec.31st.? My problems started with a droopy eyelid then double vision both eyes then even before I started on Meds. Double vision moved to when I looked right and left but not straight ahead unless I was lying on my bed reading or watching TVs then I saw 2 of everything. What I would do is shut one eye alternately if one got tired..

I have been on Mestinon since I went into Hospital 29th November 17. I had an episode of double vision about 19 months before this episode that started in Sept 2017. that would have been in Feb 2016. It took about 4 to 5 months to clear. My Appt. with the Dr for the
Muscle test is on the 26th Feb 2018. I will let you know how I get on. My Neurologist said my muscle strength is pretty good but my muscle tone is what is bothering me. My legs have lost all the muscle tone and are almost twice the size they were. Although I have to remember that for the past almost 4 years I have not been able to excercise because of my two back Surgeries I've had in Aug 2015 and again in July 2017. I wish we knew what the cause was that sets this off.

Hi had MG since 2013 using Mestinon and steroids 15 mg also metophenolate, had bad experience on friday when to A@E faced drooped eye completely closed could hardly move my mouth, slurred speech was put on 90mgX4 daily it is now mon starting to feel slightly better, this is the first time since 2013 been this bad, I also have SLE diagnosed on 2005. First time on this sight just joined, I live in UK high.