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 all,
I have been gone for several months trying to figure out what is going on with my body and if it is MG or something else.
I had 1 Neuro say yes, (put me on mestinon)1 say she was not sure,(changed me to Timespan, which I did not like as well) another say no-(and that if I stopped taking Mestinon, I would not see a different, so I stopped, I did see a difference)
I then was referred to a Neuro at Southwestern in Dallas. I love this dr! Even though I am seronegative, after a full day of SFEMG testing and other tests, she is strongly leaning towards a yes, it is MG. The biggest thing she did for me on my first visit was put me back on regular mestinon - i had gastic sleeve surgery several years ago and when you have this done, time-release medicines don't work as well in you, which is why I saw a difference in the reg. vs. timespan med.
I don't lead a very active lifestyle - i homeschool my 12 yr old son and am active in our church but am mildly sedentary. So the mestinon treatment was working fairly well but we were thinking of other options and honestly I was not being honest with myself as to what I was experiencing as far as weakness etc..
This past week has really thrown this in my face though - my father was hospitalized and I spent the week with him - about 8 hrs a day in the hospital - up and down - and it has taken a serious toll on my body. I got home on Thursday evening and here it is Monday afternoon and just now starting to get to where I can walk without feeling as though I am going to fall at any minute. My arms and hands have been so week I could hardly brush my teeth, etc...
I have an appt. with my Dallas neuro in late Feb - but have made and appt with my local neuro for tomorrow to talk about IVIg - this is what was talked about possibly being the next steo for me.
What are your thoughts about this and the time it has taken me to bounce back?
Thanks for all your suggestions and comments!
I have been gone for several months trying to figure out what is going on with my body and if it is MG or something else.
I had 1 Neuro say yes, (put me on mestinon)1 say she was not sure,(changed me to Timespan, which I did not like as well) another say no-(and that if I stopped taking Mestinon, I would not see a different, so I stopped, I did see a difference)
I then was referred to a Neuro at Southwestern in Dallas. I love this dr! Even though I am seronegative, after a full day of SFEMG testing and other tests, she is strongly leaning towards a yes, it is MG. The biggest thing she did for me on my first visit was put me back on regular mestinon - i had gastic sleeve surgery several years ago and when you have this done, time-release medicines don't work as well in you, which is why I saw a difference in the reg. vs. timespan med.
I don't lead a very active lifestyle - i homeschool my 12 yr old son and am active in our church but am mildly sedentary. So the mestinon treatment was working fairly well but we were thinking of other options and honestly I was not being honest with myself as to what I was experiencing as far as weakness etc..
This past week has really thrown this in my face though - my father was hospitalized and I spent the week with him - about 8 hrs a day in the hospital - up and down - and it has taken a serious toll on my body. I got home on Thursday evening and here it is Monday afternoon and just now starting to get to where I can walk without feeling as though I am going to fall at any minute. My arms and hands have been so week I could hardly brush my teeth, etc...
I have an appt. with my Dallas neuro in late Feb - but have made and appt with my local neuro for tomorrow to talk about IVIg - this is what was talked about possibly being the next steo for me.
What are your thoughts about this and the time it has taken me to bounce back?
Thanks for all your suggestions and comments!
Sounds like you need additional treatment. Have they given you the other blood tests for musk and Lems? It's important to know the difference because of the difference in treatments and the cancer risk with Lems. Hope you feel better soon.
I saw UTSW doctors as well and they are very kind.
I have seronegative MG and mestinon makes all the difference for me as well. My breathing tests improve and swallow is improved. I still have fatigue, but I HS too, which isn't really physically taxing. Yay!
We have a local MG group that meets once a month if you'd like to come and fellowship. I find it helpful, but that's me. :)
Waving hello from DFW!
Carly
Hugs
I saw my local neuro today and I feel pleased with the results.
I was very honest with her (and myself) as to where I am with my struggles. After a brief exam, she suggested that I go into the hospital for my first IVIg treatment series. Since we are also in the process of trying to put our house up for sale I asked if I could go in on Thursday instead of today. So that is the plan ~ Staying in for 5 days.
We went over the pros and cons.
I am hopeful this will help me get over this rough spot that I am at right now.
I will keep you all updated.
Thanks again for your encouragement!
Take care,
Annette