Mayo Clinic Connect
Wondering if anyone has Occular MG & what meds they are using
Liked by chorba
Hello @jolander and welcome to Mayo Connect!
We appreciate your post about ocular MG. Here is some information from Mayo’s website reg MG, http://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/home/ovc-20200259. Also here is a website from the NIH, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278125/. This website lists the different tests to determine MG as well as the treatment options.
I’m also tagging @socalgal @iggeez1416 @whtwater @bea2377 @sunshine56 who have also talked about MG on Connect and can share their experiences with you.
We look forward to getting to know you. How long ago were you diagnosed and what kind of treatments are you taking now? How are your current treatments working for you?
Liked by John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
Hi, I was diagnosed with MG November 29 2017 also have double vision looking left and right. However have been unable to see a Neurogical Specialist as we don’t have one at our Hospital only one who comes over from another town once a month.
I was diagnosed by a blood test and right away put into Hospital on a Heart monitor and started on Pyridostigmine bromide 30 mg. twice a day, then three times daily, then 60 mg. twice daily. Then 60 mg three times daily, over one week. My Heart rate did not go slower over that period.
I was sent home where I have some occasional bouts of abdominal pain and diarrhoea, hot flushes and sweats,excess saliva, nausea that I find Ginger tabs help. I get breathless when I excert myself, such as showering or doing housework.
I am 80 years old, and very surprised I have got MG at my age as I understand it women aged between 20 – 40 yrs is usually the case.
I also read that having double vision within 2yrs previously of MG being diagnosed can often be the case.
I am a retired Registered Nurse and took notice of my symptoms at an early stage otherwise I might not have seen my Doctor so early on.
Also my Doctor knows that I don’t make a habit of seeing her unless I’m pretty sure there is something wrong with me.
My symptoms were : droopy eyelid, double vision, difficulty swallowing. This all stared in September the week before my 80 th Birthday and the droopy right eye and from then on things got worse. And my Dr. Sent me to an Endocrinologist as he was the only person at our Hospital I could see it was he who sent me for the blood test even though he didn’t think I had MG. He tested my limbs and said they were too strong. However here I am at my stage in life. I think it could be all the stress I have been through over the last few years. Who knows?.?
Liked by Teresa, Volunteer Mentor
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Hi @mylife — I see this is your first post. I would like to welcome you to Mayo Connect. Teresa’s (@hopeful33250) post just before your post has some good information that you may want to read if you did not see it. Also, we have a few discussions about myasthenia graves (MG) which you may wish to view:
– Myasthenia Gravis* https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/
– Myasthenia Gravis https://connect.mayoclinic.org/discussion/myasthenia-gravis-2b0f14/
– Body Builder Regains Energy After Surgery for Myasthenia Gravis https://connect.mayoclinic.org/newsfeed-post/body-builder-regains-energy-after-surgery-for-myasthenia-gravis-1/
I’m also tagging @kanaazpereira @gretagean @socalgal @iggeez1416 @whtwater @bea2377 @sunshine56 @saur1994 @dschmidt @lynnes, who have talked about MG on Connect and can share experiences with you.
@mylife, you mentioned you think it could be stress. I have no medical training or knowledge but I do think stress can play a major part in autoimmune diseases. I listened to a speaker last year, Dr. Amit Sood, who gave a really great talk about resilient living. His website – http://stressfree.org/ has some really good short videos which you may find helpful.
Hoping you find some answers soon.
Liked by Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
Hi all, I’m new here and wondering about certain symptoms I’m also having. About one year ago I started with the double vision. I saw my eye doctor and he couldn’t find anything wrong. It cleared up in a few weeks at that time. Since then it has re-occurred with the droopy eyelids now….both eyes…and distorted vision. I had to stop driving because of this. Also my head wants to drop forward all the time. I also have some urinary and bowel problems. I just saw a neurologist and he thinks it might be Myasthenia Gravis. I will have a nerve test done soon. I’m 75 and wondering why now? I also read that it starts in younger women…..any more info will be appreciated….
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor
Hi @750scar78 — welcome to Mayo Connect. I’m glad you found us. I’m tagging other members who have talked about MG to see if they have any information for you. @kanaazpereira @gretagean @socalgal @iggeez1416 @whtwater @bea2377 @sunshine56 @saur1994 @dschmidt @lynnes do you have any information you can share with @750scar78 ?
Here is an article on the National Institutes of Health site – Myasthenia gravis in the elderly: Is it different?
@750scar78 have you had an Electromyography (EMG) test before? If you are able, can you let us know how the test goes for you?
Here is some information about the EMG from the Mayo Clinic website:
I am somewhat surprised that someone the age over 60 ask why medical issues happen to them…
No one ever told me through example or words, that life would be easy….. but I did see through example of many that the body wears with usage and age…
I meditate and do Tai Chi when the body allows and this has taught me a powerful point….
Acceptance of the what is…. This does not mean to go quietly into the night as Dylan Thomas states so well;
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
My suggestion would be to work on overriding negative thinking with stronger positive ones…
Liked by John, Volunteer Mentor, legallyred
Who is it that is surprised that medical issues happen to them over the age of 60, My reaction to that would be for you to work on overriding negative thinking!
We are here to discuss and try and help each other if we possible can. No one else can possibly know what people have gone through in their lives, and what they are having to overcome now.
Hi I’m sorry that this is happening to you as well, I too am waiting on my appointment to have a nerve test done since I saw a Neurologist last week, He said it would let us know more about how much the muscles have weakened. Your symptoms sound very much like mine were and you need to get onto the Meds like I am as soon as possible, the earlier the better. I’m feeling heaps better since before I was diagnosed. All the best and let us know how the test goes, as I will.
It was not a criticism of anyone….. but a suggestion of how to overcome negative thinking… relax….
Hi John, thank you for your help. I haven’t had a chance to read the info you suggest, but I will get to it. I’m having a nerve test done Thurs. the 18th and will let you know how that goes. At my initial apt. with the neurologist he said I was quite weak and from my symptoms he “thinks” it may be this disease. I’ll deal with whatever comes my way….what else can I do……
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
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.
Are your only symptoms your eyes, that you say you have Occular Myasthenia gravis
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