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
I only get like that when I have really overdone it. It is our bodies way of telling us that we are heading way too close to the danger zone. Very scary! Is there anyway you can slow down? Even the little things like sitting more, or taking less steps can make the world of difference. I am sure there are other things you can change to make your life a little easier and just as enjoyable. I have had to make a lot of adjustments, but now it gives me the energy to do what makes me happy.
As for the breathing, I also get the feeling of having just run a marathon as well as terrible pain, then I get anxious over it and it gets worse. The counting test is a good one and very reassuring. Just remember, if you fail that, go to the ER, no point in taking chances.
I increased my mestinon to 60 every 3 hours while awake and that has really helped. If you are finding that last hour between doses is a challenge, you may want to consider every 3 hours. For me, I do better if I take one at bedtime and again about 30 mins before getting up.
I also work with my GP and only see the neuro if there is a real problem. Glad we have this support group to fill in the blanks.
Hope this helps. I send hugs. Deb
I am in a bad boat right now too. Getting ready for a trip procuses anxiety and on and on and on.
flareups come in all shapes and sizes which produce more anxiety etc.
To you I would recommend trying to take mestinon when you get up at night also.
I hope your breathing improves real soon.
Yes I relate...NORMAL mg JUNK. I have xantax which I never take....but I am considering it now. Peace be with us.
Ann
I went through so so much. If you don't know.....I had symptoms like you and went into crisis which means hospital stay.
Anytime you feel breathing you really need to see your mG expert.
It is serious.
I cant even share with you how nasty it can get.
I hope to help anyone keep from having as much trouble as I did.
I'm so sorry you are having such a hard time. It must be extra hard with 2 little girls that always depend on you. I can 't give you any advise on mestinon, because it does not work for me. In the beginning of my mg journey, I felt exactly like you do now. With any exertion I could not catch my breath. I remember sitting up 1 entire night afraid if I fell asleep, I would stop breathing. I ended up having a crisis and was in the hospital for 2 weeks. Unfortunately, I had not found this group and felt so lost. My neuro was very inexperienced with mg. He felt a little mestinon, a little rest and you are as good as new. I did contact the MGFA and they recommended a neuromuscular specialist. She immediately started me on prednisone and Imuran. It took a while to find the right treatment for me, but I am doing so much better now.
Are you only on mestinon? Please take your symptoms seriously. It may be worth a 2 hour drive to see your neuro.
Take care of yourself!
Judith
My best to you!!
Carole
So sorry you're having breathing problems--I'm praying that the increase in Mestinon helps!
Pat
Sleep and Rest are SOOOOO important for us, and not getting restorative sleep can make matters so much worse.
As others already stated, don't mess around with your breathing. But when things settle down, I suggest you discuss having a sleep study with one of your Docs. Take Care!
For me I took it as a sign that my body wanted attention, to be listened too. So I learned a technique of trusting/accepting my body's message, and feeling the symptom fully and acknowledging it. Then I would turn my attention to something positive. soft music really helped me negative silence the sensations and thoughts!They more I first fully acknowledged the symptoms felt them then turn my attention towards something else...the more bearable the situation became.
I also agree with other people about importance of sleep.
I found help with some supplements (not muscle relaxants HTP5 )and some body work (Cranial).
I also remember having acute breathing symptoms and anxiety when I was a single dad with two children and feeling the stress of that responsibility.
The other thing I was able to do was to lie down /stop mid day (not sure if you can) even for 10- twenty minutes of silence.
This helped me break the day up and I wasn't as wound up tired at the end of day..
Just a few thoughts..
I really hope things improve for you
Best dan x