Myasthenia gravis (MG)

Posted by jolander @jolander, Dec 5, 2017

Wondering if anyone has Occular MG & what meds they are using

Liked by chorba

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.

@mylife

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

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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.

@mylife

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

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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..

@kanaazpereira

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.

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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.

High meant to say for above post 90mgx4 mestinon daily. Normally take 60×4 daily. H

Hi @chorba — welcome to Mayo Connect. We are glad you found us. Connect is a great place to ask questions and learn what others with similar health problems are doing for treatments. Did you have a chance to read through the MG discussion here?

@kanaazpereira posted a link in a post above yours on some very detailed care options for MG from Mayo Clinic which you may find helpful:
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/care-at-mayo-clinic/mac-20352044

Do you have any questions you would like to ask of other members with MG?

John

@chorba

High meant to say for above post 90mgx4 mestinon daily. Normally take 60×4 daily. H

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Hi Chorba, may I ask how old you are ? I am 80 and if u are young I feel bad for u going through that. I’m not nor have been that bad. Have you been on the 3 meds since you were diagnosed? I am only on 60mg x3 daily of mestinon . The Specialist says the higher t he dosage is may cause me to have worse and more side effects. My MG only started in Sept last year so it’s early days for me yet. I live in NZ and we don.t get many MG cases here. About 1 in 200.000 apparently. I am able to cope daily if I wait until the Med has been taken 1 hour however I started to drive again 3 days ago and I’ve over done it so have learnt my lesson, if I need to go in the car do only a 1 hour then home. I don’t live more than 10 mins from town. I think we do have to learn just how much we are able to do then rest which is so important with MG. take care, chin up. Cheers Marg.

@kanaazpereira

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.

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Could I ask you to put these MG ‘s onto the other ones I have been in touch with? Thanks Marg.

@chorba

High meant to say for above post 90mgx4 mestinon daily. Normally take 60×4 daily. H

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I have tried to find the drug Metophenolate you mention and cannot find that drug .have u mis spelt the word? Also what Steroid are you on? Cheers.Marg.

@chorba

High meant to say for above post 90mgx4 mestinon daily. Normally take 60×4 daily. H

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I am 52yrs old, thank you for your reply, also just received hospital app today for test at swallowing clinic on Tues, will see how it goes. Take care.

Has anyone had MG for longer than 5yrs if so does it slowly get worse, would appreciate feed back, Thank you.

@chorba

High meant to say for above post 90mgx4 mestinon daily. Normally take 60×4 daily. H

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Hi yes mispelt it is myclopholate, 15mg prednisolone. Also 90mgx4 daily mestinon.

@johnbishop

Hi @chorba — welcome to Mayo Connect. We are glad you found us. Connect is a great place to ask questions and learn what others with similar health problems are doing for treatments. Did you have a chance to read through the MG discussion here?

@kanaazpereira posted a link in a post above yours on some very detailed care options for MG from Mayo Clinic which you may find helpful:
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/care-at-mayo-clinic/mac-20352044

Do you have any questions you would like to ask of other members with MG?

John

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Hi have had MG since 2013 this year my MG has started to get worse, harder to control lack of muscle control in jaws and mouth area, effecting speech, i.e. Speech becoming slurred, difficulty speaking , anyone have any knowledge on this or has it happened to anyone else, I would very much appreciate some feed back, cheers.

Hi @chorba,

I’d like to introduce you to @socalgal @gretagean @lynnes @dschmidt @dogmamat @iggeez1416 @whtwater @bea2377 @sunshine56 who have also talked about similar symptoms with MG, and can share their experiences with you.

I’d sincerely encourage you to view this discussion, https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/, where @gretagean has shared some incredible information about diet and additional treatment.

@chorba, are you having problems with swallowing, as well?

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