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...
Hello! I joined DS awhile back, but have yet to join in. I would like to introduce myself as well as ask a few questions.
I'm 32 and live in Italy. I was diagnosed with ocular myasthenia in 2011 after a summer of really bad double vision and ptosis with facial weakness/twitches.
In 2013 the "ocular" bit fell off but I've not had too many symptoms meanwhile as long as I pace myself and have not taken mestinon or prednisone, etc, since then.
In February, I started to notice and that I was hearing from a lot of people how red my face was going and it came along with shortness of breath. I'd also start feeling like I was going to pass out, seeing "stars" and losing my sense of balance. My legs will start to sweat and tingle. This is very strange and I'm trying to get an idea of where it's coming from.
I also have MS and some thyroid issues. Could this feeling be connected to MG? My family doctor said I have dyspnea and maybe hypercapnia and ordered a spirometry test that came back normal and blood gas tests that I'm waiting on the answers back. I see my neuro later this month.
Do you experience this or is this likely something else or even nothing to worry too much about as it is? Thanks in advance for any input. :)
I'm 32 and live in Italy. I was diagnosed with ocular myasthenia in 2011 after a summer of really bad double vision and ptosis with facial weakness/twitches.
In 2013 the "ocular" bit fell off but I've not had too many symptoms meanwhile as long as I pace myself and have not taken mestinon or prednisone, etc, since then.
In February, I started to notice and that I was hearing from a lot of people how red my face was going and it came along with shortness of breath. I'd also start feeling like I was going to pass out, seeing "stars" and losing my sense of balance. My legs will start to sweat and tingle. This is very strange and I'm trying to get an idea of where it's coming from.
I also have MS and some thyroid issues. Could this feeling be connected to MG? My family doctor said I have dyspnea and maybe hypercapnia and ordered a spirometry test that came back normal and blood gas tests that I'm waiting on the answers back. I see my neuro later this month.
Do you experience this or is this likely something else or even nothing to worry too much about as it is? Thanks in advance for any input. :)
I have balance issues and weakness that makes feel "faint", but not to the point of passing out.
I would suggest keeping a journal of your symptoms to take to your neuro. Keep us posted. Hug!
Mestinon will help with symptoms, but won't treat the disease. Feel free to take some as directed at the very least to make you feel more comfortable.
I tried to go at this with mestinon only, but just got worse and had to take treatment.
TJ
Barbel, that is such a great idea. I used to keep a journal but have been pretty lax about it lately. I'll definitely pick it back up. Hug!
TJ, I still have some mestinon in the cupboard. I didn't tolerate it very well last time I tried it, but may talk to neuro about what to try now considering things have changed - yet again. :)
I'm still not completely convinced what is going on, or even if it's somehow related to MG. Hoping my neuro will have some answers when I see her. :) Best to you both.
You may need to start off with the mestinon at a low dose until you get use to it again.
If the doctor doesn't mention that you should ask her how much to start with since you haven't taken it in a while. I was told to start out as low as possible (1/4 tab) and try that for a day or two then work my way up from that point.
Like Barbel, I have to take it with food. Even if it's just a few bites because my stomach is very sensitive to it.
I'm sorry to hear about your health but I hope you begin to improve soon!!
Hugs!!