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...
Thank you all for you replies to my post and the hugs you sent - they all helped so much and I made it through yesterday's MRI and Review.....and hopefully won't have another test or Dr's Appointment for quite a while now....which is probably the Biggest Relief of the day!!
To Update you - My MRI was (thankfully!) Clear and when I saw my Neuro he told me both AChR and MuSK antibodies we negative (I don't know the exact readings as they don't give them to us in the UK) However, he said my symptoms and undeniable response to mestinon would lead him to diagnose Myasthenia Gravis. I can't believe it has taken 9years and 6months from the start of this all to get an actual diagnosis!!
However, and please don't think that I am being ungrateful because I am so grateful for finally having a Dr who believes me and is willing to treat me....but I am scared, I feel like this isn't a watertight diagnosis (if it's ever one with MG I suppose?!) I have read about peoples diagnosis's being challenged and the seronegative ones seem to have the hardest time....it's taken so long to get here I don't think I could go through it all again! Another thing that worries me is that my Neuro said he wants me to continue with the Mestinon but as I live 2hrs away he didn't want me to have to drive to him just to tell him I am well, so he is writing to my GP to review me but will tell them that if the mestinon stops working or I get worse they are to refer me directly back to him. He said that if that happened he would possibly look to do a SFEMG (I thought I had a SFEMG but it was an EMG which I had last month - was unremarkable) before he would start me on steriods etc. He said he felt the SFEMG was a lot to put me through as it would have to be done on my face and he didn't think it was necessary at this point with me doing so well on the mestinon. He felt the side effects from the steroids could be worse than the fatigue I am currently left with - which I completely agree with and he told me to give my body time to gradually build up stamina now the mestinon is working and it is working properly again. I have to say that in a way I am grateful not to have the steroids as some of you have a real rough time :( and I can look into more natural ways to boost my energy and strengthen my body - also, if things do decline, there may have been more research into seronegative MG and better tests so hopefully that is also on my side too?
What do you all make of this?? Is anyone esle on Mestinon alone?? As you can see, I have a mix of emotions and thoughts on it all...and if I am honest, I kind of don't feel like it is a diagnosis....but that is probably going to take me a while to get used after so many years of thinking this was all in my head!!
I want to say Thank You again to each and every one of you - without you and your posts I wouldn't not have had the knowledge and confidence to get a second opinion and would not be where I am now; finally receiving treatment and having an answer to this. You have been my inspiration and strength and I can never thank you all enough.
Eve.x
To Update you - My MRI was (thankfully!) Clear and when I saw my Neuro he told me both AChR and MuSK antibodies we negative (I don't know the exact readings as they don't give them to us in the UK) However, he said my symptoms and undeniable response to mestinon would lead him to diagnose Myasthenia Gravis. I can't believe it has taken 9years and 6months from the start of this all to get an actual diagnosis!!
However, and please don't think that I am being ungrateful because I am so grateful for finally having a Dr who believes me and is willing to treat me....but I am scared, I feel like this isn't a watertight diagnosis (if it's ever one with MG I suppose?!) I have read about peoples diagnosis's being challenged and the seronegative ones seem to have the hardest time....it's taken so long to get here I don't think I could go through it all again! Another thing that worries me is that my Neuro said he wants me to continue with the Mestinon but as I live 2hrs away he didn't want me to have to drive to him just to tell him I am well, so he is writing to my GP to review me but will tell them that if the mestinon stops working or I get worse they are to refer me directly back to him. He said that if that happened he would possibly look to do a SFEMG (I thought I had a SFEMG but it was an EMG which I had last month - was unremarkable) before he would start me on steriods etc. He said he felt the SFEMG was a lot to put me through as it would have to be done on my face and he didn't think it was necessary at this point with me doing so well on the mestinon. He felt the side effects from the steroids could be worse than the fatigue I am currently left with - which I completely agree with and he told me to give my body time to gradually build up stamina now the mestinon is working and it is working properly again. I have to say that in a way I am grateful not to have the steroids as some of you have a real rough time :( and I can look into more natural ways to boost my energy and strengthen my body - also, if things do decline, there may have been more research into seronegative MG and better tests so hopefully that is also on my side too?
What do you all make of this?? Is anyone esle on Mestinon alone?? As you can see, I have a mix of emotions and thoughts on it all...and if I am honest, I kind of don't feel like it is a diagnosis....but that is probably going to take me a while to get used after so many years of thinking this was all in my head!!
I want to say Thank You again to each and every one of you - without you and your posts I wouldn't not have had the knowledge and confidence to get a second opinion and would not be where I am now; finally receiving treatment and having an answer to this. You have been my inspiration and strength and I can never thank you all enough.
Eve.x
I'm only on Mestinon for MG. It's taken over 6 years to finally nail down a cause for my muscle weakness/ muscle fatigue, vision disturbances, and weak eye muscles. During this time I've also been diagnosed with another autoimmune called Sjogren's Syndrome. No steroids for me as I have blood pressure issues that the docs don't want to worsen. Unless they become absolutely necessary.
I'm also seronegative for MG but 2 neuros at a major teaching hospital believe my symptoms fit MG and have diagnosed me with it. Like you, I worry if that diagnosis will stick. But I respond to the Mestinon so that leads them to think we are FINALLY on the right road.
Take care and I'm glad you finally got a diagnosis. :)
Enjoy your newfound freedom from paying close attention to all your symptoms for diagnostic purposes. Use the Mestinon to its fullest extent to get as well as you can. Its scary, but good news for us seronegatives and the new testing is going to be available, as you surmise. There are medications other than steroids, but it is good to know you have that option, because steroids work fast. I started with Mestinon only, it just wasn't enough after about six months of increasing dosage. Most of us need more than Mestinon, but it doesn't have to be the high doses of steroids that cause so much trouble.
All the time you can buy gives you a greater chance to be on new and hopefully better, less toxic medication. But don't let your fear of steroids get you into trouble with your MG. If you are having new symptoms, do what your neuro said and get back in touch pronto!
You have been down a rough road, congrats for sticking it out and getting here! Hugs and good luck, b.