John, Volunteer Mentor | @johnbishop | Jan 22, 2018
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?
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.
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!
@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.
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.
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.
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?
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.
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High meant to say for above post 90mgx4 mestinon daily. Normally take 60x4 daily. H
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1 ReactionHi @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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1 ReactionHi 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.
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1 ReactionCould I ask you to put these MG 's onto the other ones I have been in touch with? Thanks Marg.
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.
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.
Hi yes mispelt it is myclopholate, 15mg prednisolone. Also 90mgx4 daily mestinon.
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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