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 hope you are all ok :)
I am struggling to be honest and frustrated and confused....and just don't know what to do,i'm starting to wonder if this is the illness progressing or if I am just overdoing things and getting anxious about my symptoms!! As you know I have struggled to get back on an even keel since my long weekend to Disney at the beginning of December and I seem to rest for 2-3 days, feel better, get back to work and the cycle begins again!!
I feel like I am constantly pushing myself, I feel my heart constantly beating like everything is an effort, standing in one position for too long gives me chest pressure and makes me feel faint and by the end of every day I feel weak (but only eye, facial droop, my limbs etc feel weak but do function although it sometimes feels like a huge effort!!) and nauseous (which is usually my boy's way of telling me I've done too much!) I also seem more sensitive to warm rooms (heating etc) which now make me feel much worse when I have always loved coming in from the cold....right now I'd rather shiver outside!!
I've had a few nights were I've felt uncomfortable going to bed, like I need to take a breath and couldn't satisfy my need?? I also have a pressure feeling in my throat which is worst at night - I feel like I need to swallow it down?? Last night was the worst....and to be honest, scared me!! I wasn't breathless, I just felt like I was making my body breathe...and I was almost scared to fall asleep as I didn't trust my body to continue while I was asleep!! Living with my 2 young daughters alone, you can imagine the thoughts that ran through my head!! I thought it must be my anxiety playing up despite the fact that I am only ever anxious in social situations and NEVER at home! So, I tried to take a long breath out (this usually releases a load of air I hadn't realised I's stored up while doing subconscious shallow breathing if its anxiety related)but found there was nothing, no stored up air, infact there was no air in my lungs!! So this didn't fit with anxiety at all. I tried the counting breath (with you all in my mind! bless you!!) and got to 32, so reassured that wasn't too bad I relaxed and eventually fell asleep...but did wake a lot during the night. Today, my chest/ribs feel sore as if I've over puffed running (I can just about remember running!!lol!!) Does this make any sense to anyone?!?!?!?
I did see my GP last week and she told me to double up 2 of my doses taking me from 60mg Mestinon 4xper day to 1x60mg, 1x120mg, 1x120mg, 1x60mg.....I decided to just up the doses by half to 90mg and build up more gradually but it would seem to me that 90mg 4xper day would give me a steadier stream in my system?? SHe has admitted she knows very little about MG and was just going on the daily max she can prescribe without referring me to my Neuro who is 2 hours away....so I am grateful to her for trying!
Can any of you help or relate at all?? I would be so grateful for any input here!
Thank you all! x
I am struggling to be honest and frustrated and confused....and just don't know what to do,i'm starting to wonder if this is the illness progressing or if I am just overdoing things and getting anxious about my symptoms!! As you know I have struggled to get back on an even keel since my long weekend to Disney at the beginning of December and I seem to rest for 2-3 days, feel better, get back to work and the cycle begins again!!
I feel like I am constantly pushing myself, I feel my heart constantly beating like everything is an effort, standing in one position for too long gives me chest pressure and makes me feel faint and by the end of every day I feel weak (but only eye, facial droop, my limbs etc feel weak but do function although it sometimes feels like a huge effort!!) and nauseous (which is usually my boy's way of telling me I've done too much!) I also seem more sensitive to warm rooms (heating etc) which now make me feel much worse when I have always loved coming in from the cold....right now I'd rather shiver outside!!
I've had a few nights were I've felt uncomfortable going to bed, like I need to take a breath and couldn't satisfy my need?? I also have a pressure feeling in my throat which is worst at night - I feel like I need to swallow it down?? Last night was the worst....and to be honest, scared me!! I wasn't breathless, I just felt like I was making my body breathe...and I was almost scared to fall asleep as I didn't trust my body to continue while I was asleep!! Living with my 2 young daughters alone, you can imagine the thoughts that ran through my head!! I thought it must be my anxiety playing up despite the fact that I am only ever anxious in social situations and NEVER at home! So, I tried to take a long breath out (this usually releases a load of air I hadn't realised I's stored up while doing subconscious shallow breathing if its anxiety related)but found there was nothing, no stored up air, infact there was no air in my lungs!! So this didn't fit with anxiety at all. I tried the counting breath (with you all in my mind! bless you!!) and got to 32, so reassured that wasn't too bad I relaxed and eventually fell asleep...but did wake a lot during the night. Today, my chest/ribs feel sore as if I've over puffed running (I can just about remember running!!lol!!) Does this make any sense to anyone?!?!?!?
I did see my GP last week and she told me to double up 2 of my doses taking me from 60mg Mestinon 4xper day to 1x60mg, 1x120mg, 1x120mg, 1x60mg.....I decided to just up the doses by half to 90mg and build up more gradually but it would seem to me that 90mg 4xper day would give me a steadier stream in my system?? SHe has admitted she knows very little about MG and was just going on the daily max she can prescribe without referring me to my Neuro who is 2 hours away....so I am grateful to her for trying!
Can any of you help or relate at all?? I would be so grateful for any input here!
Thank you all! x
Deb - Thank you so much for you help, it's nice to hear from someone who is also managed by their GP. I do feel like I need to slow down, but have already reduced my life down to such a minimum that the next step is to look at whether I can keep working...if things don't improve with the mestinon increase then I might have to ask for some time off and see if it helps?? I will bear in mind the 3 hourly dose and definitely give it a go - thank you!! I hope you're doing ok!x
Tim - It sounds like you've been through it!! I'm hearing about these CPAP machines so will keep it in mind, - thank you, and good luck with yours. x
Ann - I always value your replies as I know you have been though it, bless you. Thank you for your advice, I will definitely keep it in mind if things don't ease up on the higher dose - I hope your trip goes well!x
Judith - Thank you so much for replying - you mad me feel so relieved when you wrote saying how you had been afraid to fall asleep too! Thank you!! I am seronegative and unremarkable EMG so I was told I would need a SFEMG on my face for anything more than mestinon...my neuro wanted to spare me the ordeal at the time and I am trying to avoid it at all costs if I'm honest too! But you may be right, if this continues I'll have to get a grip and get on with it!! I'm glad you are doing better :) Thanks again.x
msunny - I am so sorry that you are having such a rough time :( I really hope your neuro has a good plan to get you feeling better - good luck....and thanks again for replying.x
Carole - I haven't tried the time release mestinon but will definitely keep it in mind when I see my Dr next - thank you!x
Xmas25 - I am sorry you are also having such a bad time - sleep paralysis sounds scary!! Bless you!! My nearest University Hospital is the 2 hr drive unfortunately....this is definitely not one of the perks of living in the countryside!! Thanks again for all of your advice! x
Barb - thank you so much for your advice and your understanding - it is so reassuring to know that someone else understands and know s what I am talking about! I cannot thank you enough :) I am sorry you have been suffering - I really ope you feel better soon! x
Tim62 - I am so pleased that you are doing slightly better, I hope you continue to improve. Thank you for your advice and well wishes :) x
Pat - Thank you for your well wishes and advice - it's good to hear how others manage their mestinon and gives me some ideas to keep in mind - thanks again!x
MGOhio - Thanks for your story and advice - I will definitely ask my Doctor about a sleep study if this doesn't settle with the increase in mestinon. It's good to hear that you are doing slightly better than before - I hope things improve some more for you :) thanks again. x
Hi Dan - Thanks for replying, it's nice to hear someone else runs marathons without knowing it!! lol! I will definitely keep your advice in mind - the little rest/nap idea is a good one and I think I might have to just make myself give in and start making time to do this. Thanks again, I hope you're doing ok now you're finding some answers :) x
It's not very comforting to hear this, I know: but it sounds like you should see your neurologist soon.
You might be having a reaction to Mestinon?
Or? Mestinon might not be enough - to handle a MG flare-up?
(Do you take Prednisone? Prednisolone?)
There may be other autoimmune conditions, in addition to MG?
I have one of these conditions, it causes my voluntary muscles, arms & legs - to fire, all the time. It gets worse at night, interferes with sleep - and makes breathing more difficult. (It's not restless-leg-syndrome.) The prescription that helps with this additional problem - is outside the normal regime of MG meds.
Thinking of you - Ross