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- I just want to say a huge thank you for the replies and hugs from my "am I being too sensitive" post....and I wanted to update you all.
I phoned my GP yesterday morning and she said this was way over her head and I needed to be referred back to my Neuro - there is a 15 week for him on the NHS so I bit the bullet (with all of your supportive words in mind!) and got a private appointment to see him that evening. Feeling a little dubious after the lack of response from him after my letters, it is safe to say that I was very nervous about the appointment and, as I have said before, the lack of positive tests (negative to both antibodies and an unremarkable EMG) make me doubt how solid my clinical diagnosis actually is and I decided that I had to ask and I had to know once and for all!
I was his last appointment at 7.30pm and we didn't go in until 8.15 so I was expecting a very tired Dr and not much else....so imagine my surprise when he stopped me at the start to apologise for not being in touch, he explained that he had me on his telephone consultation list at the NHS hospital as he felt I needed more than just a letter and said he was very sorry that he had not had the time to get back to me - I have to say that I have seen him at work at the NHS hospital and it was manic there to say the least! He also said that there would be no charge for my private appointment yesterday and that he was sorry I had needed to make the 2hr trip to him - he then proceeded to answer all of my questions very thoroughly and talk everything through meaning that I left his office a 9pm...I was so amazed at the time and attention he had given me at that time of night after a long day...especially when he had already declared that there would be no charge...I have to say I feel very lucky to have this Dr!!! It also made me realise that I have to remember that he is NOT neuro#1 who was very dismissive and unhelpful - I think I get so worked up about Doctors because of the treatment I had from him and I MUST NOT tar them all with his brush! He made me feel I had to "prove" my symptoms to him and that they made no sense - where this neuro has never made me feel that way at all....I think I just get worried that he will change when I go to see him?
Anyway! We discussed my breathing issues and the reduction in mestinon effectiveness and he promptly upped my dose from 60mg 4xper day to 90mg 4-5x per day. If that becomes less effective I am now to email him directly and he will schedule the SFEMG....Now here came the BIG question...I asked him that if we got to that point and, like the other tests, that was also negative - would that change my diagnosis or how he would treat me? And the short answer is - NO! (Not what I was expecting if I am honest!) He felt that my quality of life is very poor especially for my age and explained that the next stage of steroids comes with it's risks and what those risks are (which I kind of knew because of you all sharing your experiences here) He said the SFEMG would be the cherry on the cake but, like Lupus and Rheumatoid Arthritis there are cases where the clinical picture is clear but the tests don't back it up (I suppose this is the one positive of having very weak, droopy facial muscles as they provide a very visual marker for him to be able to monitor my symptoms) and therefore he felt my case justified the calculated risk of trialling steroids and immunosuppressants if the mestinon was not enough alone as his diagnosis remains Myasthenia Gravis regardless. He explained that he sees many cases and worked in Oxford and seems to really know his stuff where MG is concerned! We both agreed that we hope the increase in mestinon will be enough and we won't have to go to the next level, but I now know what my options are and have a plan should I need to explore those options - which is a huge relief as you all know how much I have been stressing about having my diagnosis removed if the SFEMG was negative!!
ALSO....I asked him about the fatigue side of it and I know many of you have said that Doctors are very quick to dismiss it as a part of MG and how they believe that muscle weakness is the only thing attributed to the disease. He said there are various forms of fatigue - not just the basic mental and physical but that lots of his MG patients complain of weakness and also of feeling "completely shattered" and he acknowledged that that can sometimes be worse than the weakness! He said we also have to remember that acetylcholine is in the brain as well as the muscles and it certainly all plays a part!
So, I really want to say a big thank you to you all for your support...and the kick up the bottom that I needed :) I owe you all more than you know. x
I phoned my GP yesterday morning and she said this was way over her head and I needed to be referred back to my Neuro - there is a 15 week for him on the NHS so I bit the bullet (with all of your supportive words in mind!) and got a private appointment to see him that evening. Feeling a little dubious after the lack of response from him after my letters, it is safe to say that I was very nervous about the appointment and, as I have said before, the lack of positive tests (negative to both antibodies and an unremarkable EMG) make me doubt how solid my clinical diagnosis actually is and I decided that I had to ask and I had to know once and for all!
I was his last appointment at 7.30pm and we didn't go in until 8.15 so I was expecting a very tired Dr and not much else....so imagine my surprise when he stopped me at the start to apologise for not being in touch, he explained that he had me on his telephone consultation list at the NHS hospital as he felt I needed more than just a letter and said he was very sorry that he had not had the time to get back to me - I have to say that I have seen him at work at the NHS hospital and it was manic there to say the least! He also said that there would be no charge for my private appointment yesterday and that he was sorry I had needed to make the 2hr trip to him - he then proceeded to answer all of my questions very thoroughly and talk everything through meaning that I left his office a 9pm...I was so amazed at the time and attention he had given me at that time of night after a long day...especially when he had already declared that there would be no charge...I have to say I feel very lucky to have this Dr!!! It also made me realise that I have to remember that he is NOT neuro#1 who was very dismissive and unhelpful - I think I get so worked up about Doctors because of the treatment I had from him and I MUST NOT tar them all with his brush! He made me feel I had to "prove" my symptoms to him and that they made no sense - where this neuro has never made me feel that way at all....I think I just get worried that he will change when I go to see him?
Anyway! We discussed my breathing issues and the reduction in mestinon effectiveness and he promptly upped my dose from 60mg 4xper day to 90mg 4-5x per day. If that becomes less effective I am now to email him directly and he will schedule the SFEMG....Now here came the BIG question...I asked him that if we got to that point and, like the other tests, that was also negative - would that change my diagnosis or how he would treat me? And the short answer is - NO! (Not what I was expecting if I am honest!) He felt that my quality of life is very poor especially for my age and explained that the next stage of steroids comes with it's risks and what those risks are (which I kind of knew because of you all sharing your experiences here) He said the SFEMG would be the cherry on the cake but, like Lupus and Rheumatoid Arthritis there are cases where the clinical picture is clear but the tests don't back it up (I suppose this is the one positive of having very weak, droopy facial muscles as they provide a very visual marker for him to be able to monitor my symptoms) and therefore he felt my case justified the calculated risk of trialling steroids and immunosuppressants if the mestinon was not enough alone as his diagnosis remains Myasthenia Gravis regardless. He explained that he sees many cases and worked in Oxford and seems to really know his stuff where MG is concerned! We both agreed that we hope the increase in mestinon will be enough and we won't have to go to the next level, but I now know what my options are and have a plan should I need to explore those options - which is a huge relief as you all know how much I have been stressing about having my diagnosis removed if the SFEMG was negative!!
ALSO....I asked him about the fatigue side of it and I know many of you have said that Doctors are very quick to dismiss it as a part of MG and how they believe that muscle weakness is the only thing attributed to the disease. He said there are various forms of fatigue - not just the basic mental and physical but that lots of his MG patients complain of weakness and also of feeling "completely shattered" and he acknowledged that that can sometimes be worse than the weakness! He said we also have to remember that acetylcholine is in the brain as well as the muscles and it certainly all plays a part!
So, I really want to say a big thank you to you all for your support...and the kick up the bottom that I needed :) I owe you all more than you know. x
I've had hopeless doctors and its frightening. When I was first having thyroid problems one of our local GPs saw me on three separate occasions and kept telling me that there was nothing wrong with me and that I just wasn't coping well with my two 'babies' - one 3 months and one 18 months. I knew it wasn't ordinary tiredness but.... Each time I left the surgery I ended up nearly in tears with exhaustion and frustration. Finally I saw one of his colleagues who ordered blood work - by which time I was in a near suicidal state of depression - the so called 'myxoedema madness'. The results came back so far off scale the lab couldn't give a reading. My GP told me after he had been on the point of sectioning me :/. The relief I felt to be believed, to know I wasn't going crazy and to know they had a treatment plan can't be explained. I burst into tears in relief.
He's a definite keeper!!
You just made my day.
That is total awesome.
A doc who apologizes is an awesome doc.
That is wonderful to hear.
Also IVIG is seriously expensive (I think)
My cellcept alone is 2000 a month.
I have been where you are with doctors before so feel very empathetic.There is nothing worse then being dismissed and not having answers.I still worry every once in a while I might somehow lose my long distance neurologist, or lose my meds or some such. It is a fear that just sits back there. in a dark corner of my mind.
Validation goes a long way at allaying such things. Thanks so much for sharing this! Hugs, Marie
Best wishes to you!
~Marina