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...
I had my appt yesterday with my neuro. My husband went with me as a support but also as an accountability tool. :)
First, he was thrilled that my migraines have been under-control for the last month.
Then, we started talking about the MG. He (my neuro) is growing ever so frustrated that I am not having the improvements that he is expected with the mestinon. I have been on it since March, I believe. I am at 180mg. 2x's a day.
I am not reporting great improvement in strength and esp. no improvement in ocular concerns.
I shared with him a fall I had last week - legs just simply gave out. (There is where my accountability came into check)
At first he said he was going to send me to a neuro-muscular doc at the major teaching hospital in our state, but then decided that due to spinal issues I have, plus the MG, that he wanted me to go back to another local neuro for a single fiber EMG. Now I don't know what the name of the first test I had done was, but it was the patches they apply to different areas, shock repeatedly, the measure the result.
He then said, we may not even be looking at MG ~ It could be something completely different. At this time, he left the room to go look at my spinal MRI's and contemplate.
That is when I lost it for the first time. My husband, bless his heart, consoled me and tried to understand why the tears ~ All I could think of was I am just getting to where I am starting to accept the MG dx and now it may not even be it? Also, I DON'T want to be that patient that is referred to as a "very complex patient" and frustrate her neuro.
I was able to pull it together by the time he came back but was just in a funky mood the rest of the day.
Last night I could not sleep so guess what was on my mind? LOL! I just want to go back in and talk with my neuro again, and see if maybe the mestinon IS doing more than I think and maybe I just do not have reasonable expectations for what it will do. Does that makes sense?
Maybe it is helping me physically more than I realize, but maybe just not ocular.
This is all so confusing ~ I also don't want to start over at step one again with trying to find out what this is if it is not MG.
Hugs to you all! Thanks for being here!
First, he was thrilled that my migraines have been under-control for the last month.
Then, we started talking about the MG. He (my neuro) is growing ever so frustrated that I am not having the improvements that he is expected with the mestinon. I have been on it since March, I believe. I am at 180mg. 2x's a day.
I am not reporting great improvement in strength and esp. no improvement in ocular concerns.
I shared with him a fall I had last week - legs just simply gave out. (There is where my accountability came into check)
At first he said he was going to send me to a neuro-muscular doc at the major teaching hospital in our state, but then decided that due to spinal issues I have, plus the MG, that he wanted me to go back to another local neuro for a single fiber EMG. Now I don't know what the name of the first test I had done was, but it was the patches they apply to different areas, shock repeatedly, the measure the result.
He then said, we may not even be looking at MG ~ It could be something completely different. At this time, he left the room to go look at my spinal MRI's and contemplate.
That is when I lost it for the first time. My husband, bless his heart, consoled me and tried to understand why the tears ~ All I could think of was I am just getting to where I am starting to accept the MG dx and now it may not even be it? Also, I DON'T want to be that patient that is referred to as a "very complex patient" and frustrate her neuro.
I was able to pull it together by the time he came back but was just in a funky mood the rest of the day.
Last night I could not sleep so guess what was on my mind? LOL! I just want to go back in and talk with my neuro again, and see if maybe the mestinon IS doing more than I think and maybe I just do not have reasonable expectations for what it will do. Does that makes sense?
Maybe it is helping me physically more than I realize, but maybe just not ocular.
This is all so confusing ~ I also don't want to start over at step one again with trying to find out what this is if it is not MG.
Hugs to you all! Thanks for being here!
I am sorry you are struggling with MG. It is a terrible disease, but you can get treatment for it and it is manageable. I don't see that happening for you taking mestinon only. You are still on step one and need to get to step two. Step three can be coping if you want or make it step two, but YOU NEED TREATMENT. Don't mess around with this disease. You need something to push back MG so you can improve, because mestinon will not do that. Mestinon will not stop your MG from progressing either, which it sounds like it might be. This disease is not something you can mess around with. I tried to do mestinon only and I got worse over a few months and I needed treatment. No choice.
I have also seen/read about several people with spinal issues having this disease. In fact, I would venture to say I myself have unknown spinal issues. I have never had it checked.
You have myasthenia gravis, it isn't the end of the world and you can get better. You have to want to get better and get the right people around you. That would include a neuro-muscular doc (neurologist). The amount of mestinon you are taking is TOO MUCH AT ONCE, unless it is a mestinon timespan, with timed releases. There is literature that states patients should never exceed 120mg every three hrs. My neuro says 120mg every four, in part because too much mestinon can make you weaker.
I would suggest you take 90-120mg every 4-5 hrs, instead of 180mg 2X a day. Please discuss this with your doctors and get treatment so you can start feeling better about all of this. Maybe get a round of IVIG to push this back and get on something to suppress the immune system. Continue to take mestinon as needed.
I hope you feel better soon. Forgive me for the shouting, but I want my points to get across to you...for your own good.
Peace be with you,
TJ from CA
I was sent to the local teaching college 13 years, and final got the dx. I have a rare version of MG, and it took a while to get a valid diagnosis. But when it was final certain, I could begin to figure out how to go forward.
Each of us is different, so what works for one of us may not work for another. From my personal situation, Mestinon did nothing for me. I don't have occular; I have generalized MG.
Good luck, and stay positive. A positive attitude really does help. And lean on those who love you!
Maureen
When I was dx with mg one of the first things I latched onto were the words my Doc said to me " Chris , mg isn't curable but it is very manageable " having said that in my opinion I agree Tj your taking to much Mestinon without the other supporting meds aka Mestinon , Imuran etc..
I understand your frustration however channel that frustration into staying focused and having a conversation with your Doc about moving foward with possibly additional meds. There have been many times over the years I've fine tuned dosages , treatment etc according to the exasperation level.
Keep the faith and don't give up and hope you feel improvement soon.
Cj
I wanted to ask earlier in my reply but forgot as you suffer from migraine headaches. For many years I suffered from something similar called cluster headaches aka suicide headache . My question to you is what type of meds did you use to manage them. You will probably laugh at this as for clusters it's a very high dosage of you guessed it , PREDNISONE...unreal just curious if it's similar.
Cj
I failed to mention the the 180mg of mestinon I am on 2x's a day is the timespan pill.
I have thought so much about this over the last several days, and I think that I am going to see if I can get back into see my neuro in the next week or so - and just talk about what my expectations were for mestinon and what they should really be - because I think I may be really off base.
I am looking forward to seeing the other neuro who is in my local area (she did my first emg testing) to see what the single fiber shows ~ but also to see if she still believes this is MG as she did in the beginning.
Cj, I am currently taking Depakote for my migraines - this was changed a month ago and has helped decrease the frequency tremendously but not completely - but I am good with that! Baby steps! :)