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're all well :) I am a little better now I have dropped my mestinon back to 60mg doses but still intermittent having chest heaviness/pressure on standing making breathing an effort! My energy levels are beyond zero, the slightest activity wears me out and mestinon is only helping slightly with my weak muscles....I now have 8 weeks to wait until my SFEMG :(
I am hoping I've had a virus or something which has triggered this flare up and it wasn't just the 90mg doses of mestinon?
My question is about a strange symptom I've been having over the past month while my symptoms have been getting worse - I don't think it seems like MG and this is what makes me wonder if I have had some sort if virus? It mainly happens when I go to bed at night (but also sometimes when I'm very tired) and it is usually when I lie down - I feel like I have a very dry throat to the point where it wakes me in the night and feels blocked its so dry! Yet my mouth is not dry at all?!?!?! I don't know if my throat is actually dry or that is just the sensation?? I also feel the need to drink or cough and clear my throat, like there is a tickle at the base if my throat so I have this silly little pointless cough now too! Lol!! I have nothing to cough or clear away and I have no cold or mucus at all. My voice is straining easily after talking and my chest muscles feel sore at the moment when breathing but the Dr has checked me over and found nothing, no infection etc and I also had a chest X-Ray so I'm pretty confident there is no infection etc. I am awaiting an appointment for a chest CT for a closer look but I just wondered if any of you have ever had anything like this at all??
Thanks everyone :) x
I am hoping I've had a virus or something which has triggered this flare up and it wasn't just the 90mg doses of mestinon?
My question is about a strange symptom I've been having over the past month while my symptoms have been getting worse - I don't think it seems like MG and this is what makes me wonder if I have had some sort if virus? It mainly happens when I go to bed at night (but also sometimes when I'm very tired) and it is usually when I lie down - I feel like I have a very dry throat to the point where it wakes me in the night and feels blocked its so dry! Yet my mouth is not dry at all?!?!?! I don't know if my throat is actually dry or that is just the sensation?? I also feel the need to drink or cough and clear my throat, like there is a tickle at the base if my throat so I have this silly little pointless cough now too! Lol!! I have nothing to cough or clear away and I have no cold or mucus at all. My voice is straining easily after talking and my chest muscles feel sore at the moment when breathing but the Dr has checked me over and found nothing, no infection etc and I also had a chest X-Ray so I'm pretty confident there is no infection etc. I am awaiting an appointment for a chest CT for a closer look but I just wondered if any of you have ever had anything like this at all??
Thanks everyone :) x
Thanks for responding, the humidifier sounds like a good idea - I'll definitely look into one if it doesn't settle :) I hope you are well :) x
We walk a constant tight rope don't we? Always balancing Meds, rest, & symptoms.
Best wishes .... oh I use Biotin dry mouth products ... probably own half the company by now .... message me if you want
Those meds can have the effect of thinning the outer layers of any tissue. Even though I am tapering Prednisone? My skin and throat are very easily irritated - even though I am well-hydrated.
Meston's side effects are largely gastrointestinal and pulminary. Everything starts to get liquidy--lungs, saliva, and GI (can cause really loose stools).
It might just be the way you react to the change in body fluids. I've had some strange minor symptoms that come and go as my body adjusts (I was only diagnosed about 10 months ago).
I have a tentative diagnosis of Sjogren's (dry eyes, dry mouth, dry cough) but test negative! Seronegative Queen here. When my MG specialist asked after my 1 month trial of mestinon how I was tolerating the side effects, I said that things were going well. I usually have too little sweat, spit or tears and now I am doing a lot better on those fronts. The GI side effects were a bit of a problem the first week but I have adjusted well. I think these two autoimmune diseases travel together as I've noticed Sjogren's/MG people on both support forums. My MG doc wrote to my family doc that I wasn't suffering from cholinergic side effects. But I am but they work in my favour - fewer eye drops etc. And I am so much less weak. Finally something is going my way! I now keep water AND mestinon by my bed.
Kendo