Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone - sorry to just whinge on but I am so confused ...and upset right now!!
As you know I am seronegative with unremarkable EMG, I initially responded really well to Mestinon until I took a trip to Disney with my children in December. I went back to see my Neuro at the beginning of February and he was very positive saying that he wanted me to incresed my mestinon and if that didn't help he would arrange a SFEMG. I specifically asked if that test would change my diagnosis or how he would treat met if, like everything else, it was negative....he said no, went into a long explanation of how there are seronegative variants of Lupus, Rheumatoid Arthritis etc and that he felt my quality of life was very poor for my age and that despite the risks of steroids he felt my case justified a therapeutic trial of steroids....he even mentioned that we would need to consider whether I had any plans for another baby because some of the more aggressive treatments would not be suitable for me in that case. My Father was with me at that appointment and we both left feeling that he was assured of my diagnosis whatever the test results and steroids were an option if the mestinon increase did not help.
Then, I had my flare up or virus that caused me some worrying symptoms last week and I spoke to him - on that call he sounded a little off and said how he would not try steroids without the SFEMG, I agreed that I also wanted the test and would prefer a positive result to back up the diagnosis before having to take the unappealing plunge into steroids but that I was just concerned with the chest pressure etc I was experiencing. I had reassured myself that I had caught him at a bad time as he was meant to be on holiday but today I received the letter that has gone to my GP! It says that he told me to increase the mestinon but that he would not be happy to do a therapeutic trial of steroids "without further evidence of Myasthenia" he also went on to say that he has arranged a SFEMG "to determine whether the patient does or does not have Myasthenia" ????????? Am I reading too much into this or does this seem like a contradiction of what we discussed?!?!? The "Solidity" of my diagnosis as he put it during our appointment suddenly seems less "Solid"!!! I am hoping it was dictated on his "bad" day!!!
I feel so confused! Part of me wants to write to him and clarify what we discussed but then the other part of me feels this may just get his back up further and it is better to just wait until I see him after the test -I will make sure my Father is there so that we can both challenge him if he goes back on what we discussed at my appointment!
Its so frustrating and makes me doubt everything all over again!! Why is this so complicated and when you just feel like someone is on your side....the table suddenly turn...again!!
Sorry to vent....I've just really had enough of this whole jumping through hoops to have the goalposts changed!! x
As you know I am seronegative with unremarkable EMG, I initially responded really well to Mestinon until I took a trip to Disney with my children in December. I went back to see my Neuro at the beginning of February and he was very positive saying that he wanted me to incresed my mestinon and if that didn't help he would arrange a SFEMG. I specifically asked if that test would change my diagnosis or how he would treat met if, like everything else, it was negative....he said no, went into a long explanation of how there are seronegative variants of Lupus, Rheumatoid Arthritis etc and that he felt my quality of life was very poor for my age and that despite the risks of steroids he felt my case justified a therapeutic trial of steroids....he even mentioned that we would need to consider whether I had any plans for another baby because some of the more aggressive treatments would not be suitable for me in that case. My Father was with me at that appointment and we both left feeling that he was assured of my diagnosis whatever the test results and steroids were an option if the mestinon increase did not help.
Then, I had my flare up or virus that caused me some worrying symptoms last week and I spoke to him - on that call he sounded a little off and said how he would not try steroids without the SFEMG, I agreed that I also wanted the test and would prefer a positive result to back up the diagnosis before having to take the unappealing plunge into steroids but that I was just concerned with the chest pressure etc I was experiencing. I had reassured myself that I had caught him at a bad time as he was meant to be on holiday but today I received the letter that has gone to my GP! It says that he told me to increase the mestinon but that he would not be happy to do a therapeutic trial of steroids "without further evidence of Myasthenia" he also went on to say that he has arranged a SFEMG "to determine whether the patient does or does not have Myasthenia" ????????? Am I reading too much into this or does this seem like a contradiction of what we discussed?!?!? The "Solidity" of my diagnosis as he put it during our appointment suddenly seems less "Solid"!!! I am hoping it was dictated on his "bad" day!!!
I feel so confused! Part of me wants to write to him and clarify what we discussed but then the other part of me feels this may just get his back up further and it is better to just wait until I see him after the test -I will make sure my Father is there so that we can both challenge him if he goes back on what we discussed at my appointment!
Its so frustrating and makes me doubt everything all over again!! Why is this so complicated and when you just feel like someone is on your side....the table suddenly turn...again!!
Sorry to vent....I've just really had enough of this whole jumping through hoops to have the goalposts changed!! x
You are also part of the team. You need to work together and have respect for each other.
If you don't respect him or think he is making wrong decisions you may want to get another opinion.
This is very very difficult.
As a side note. You are not being mean by looking for another MG specialist. You are not being unreasonable by being unhappy. You and I think a lot alike. :-) You need to do what is best for you.
BIG HUG!
Barbel