Myasthenia Gravis For Young People Community Group
This Group is for young people with Myasthenia Gravis. For young people with this condition (I like to say condition instead of disease) we all know its hard and very frustrating, you all know what its like to have mg (myasthenia gravis) and you all need to know there are other young people with the same thing! Come join the Group! We'd love to hear your stories,...
A thymectomy is an operation to remove the thymus gland. It usually results in remission of myasthenia gravis with the help of medication including steroids. However, this remission may not be permanent
Has anyone had this op?
Or is anyone thinking about having this op?
Has anyone had this op?
Or is anyone thinking about having this op?
My dr's were so amazing and I really appreciate them.
Things have gotten a little better since my surgery, but not to much. my sell level has only dropped 1 point in 7 months.
but believe me, just that one count drop made all the difference.
About me, had mild symptoms (mostly double vision for 7 years) Then about a year and a half ago started having trouble walking in high heels and riding my bicycle (falling off, when trying to get leg to catch body weight when stopping) and facial fatigue and eyelid tiredness.
Treatments so far include:
Mestinon - (also take probantheline to help with tummy issues)
Prenisolone (as high as 60mg, as low as 7 - now!)
Cellcept 2000mg per day
one IVIG - not a major change I think?
Years ago I was told at the Mayo Clinic I was too mild to need thymectomy. Now, living in the UK with symptoms worsening and drugs not seeming to knock it back (enough) I am sadly having to try to figure out how to make the decision.
Anybody got any thoughts?
Hope you are all OK
About me, had mild symptoms (mostly double vision for 7 years) Then about a year and a half ago started having trouble walking in high heels and riding my bicycle (falling off, when trying to get leg to catch body weight when stopping) and facial fatigue and eyelid tiredness.
Treatments so far include:
Mestinon - (also take probantheline to help with tummy issues)
Prenisolone (as high as 60mg, as low as 7 - now!)
Cellcept 2000mg per day
one IVIG - not a major change I think?
Years ago I was told at the Mayo Clinic I was too mild to need thymectomy. Now, living in the UK with symptoms worsening and drugs not seeming to knock it back (enough) I am sadly having to try to figure out how to make the decision.
Anybody got any thoughts?
Hope you are all OK
About me, had mild symptoms (mostly double vision for 7 years) Then about a year and a half ago started having trouble walking in high heels and riding my bicycle (falling off, when trying to get leg to catch body weight when stopping) and facial fatigue and eyelid tiredness.
Treatments so far include:
Mestinon - (also take probantheline to help with tummy issues)
Prenisolone (as high as 60mg, as low as 7 - now!)
Cellcept 2000mg per day
one IVIG - not a major change I think?
Years ago I was told at the Mayo Clinic I was too mild to need thymectomy. Now, living in the UK with symptoms worsening and drugs not seeming to knock it back (enough) I am sadly having to try to figure out how to make the decision.
Anybody got any thoughts?
Hope you are all OK
About me, had mild symptoms (mostly double vision for 7 years) Then about a year and a half ago started having trouble walking in high heels and riding my bicycle (falling off, when trying to get leg to catch body weight when stopping) and facial fatigue and eyelid tiredness.
Treatments so far include:
Mestinon - (also take probantheline to help with tummy issues)
Prenisolone (as high as 60mg, as low as 7 - now!)
Cellcept 2000mg per day
one IVIG - not a major change I think?
Years ago I was told at the Mayo Clinic I was too mild to need thymectomy. Now, living in the UK with symptoms worsening and drugs not seeming to knock it back (enough) I am sadly having to try to figure out how to make the decision.
Anybody got any thoughts?
Hope you are all OK
About me, had mild symptoms (mostly double vision for 7 years) Then about a year and a half ago started having trouble walking in high heels and riding my bicycle (falling off, when trying to get leg to catch body weight when stopping) and facial fatigue and eyelid tiredness.
Treatments so far include:
Mestinon - (also take probantheline to help with tummy issues)
Prenisolone (as high as 60mg, as low as 7 - now!)
Cellcept 2000mg per day
one IVIG - not a major change I think?
Years ago I was told at the Mayo Clinic I was too mild to need thymectomy. Now, living in the UK with symptoms worsening and drugs not seeming to knock it back (enough) I am sadly having to try to figure out how to make the decision.
Anybody got any thoughts?
Hope you are all OK
About me, had mild symptoms (mostly double vision for 7 years) Then about a year and a half ago started having trouble walking in high heels and riding my bicycle (falling off, when trying to get leg to catch body weight when stopping) and facial fatigue and eyelid tiredness.
Treatments so far include:
Mestinon - (also take probantheline to help with tummy issues)
Prenisolone (as high as 60mg, as low as 7 - now!)
Cellcept 2000mg per day
one IVIG - not a major change I think?
Years ago I was told at the Mayo Clinic I was too mild to need thymectomy. Now, living in the UK with symptoms worsening and drugs not seeming to knock it back (enough) I am sadly having to try to figure out how to make the decision.
Anybody got any thoughts?
Hope you are all OK