New to MG
 

I was diagnosed with MG in March of this year after being hospitalized and undergoing many tests and repeating some of those over again. All tests were normal except finally a single fiber emg was done and it was positive. I was hospitalized for extreme shortness of breath and weakness. In restrospect, I can now see that this was coming on for sometime because I have experienced double vision off and on for several years and for aboput the last two years I have been getting more short of breath with exertion and I just attributed it to age(59), weight(200), and from lack of physical exercise. I was given a trial dose of Mestinon 30mg twice daily which improved my symptoms and I was already on steroids for a severe case of eczema. I am now on Mestinon 60mg three to four times daily. I sometimes take the fourth one in the middle of the night when I have breathing problems. I cannot walk over 50 feet without sitting down to rest and I was wondering if any of you have had to get power chairs and how did you go about it? I have really enjoyed reading the posts on this forum and look forward to hearing from you.

Hi ibeeanurse,
When I have crises (weekly), I almost can't walk. During the lighter days of the crisis, I use a cane and have to sit and rest inmy walkings. During the worst days, I stay at home and rest. I think that if I would have to do something during the worst days, I would have to use a chair.
I'm still trying to get used to MG: it flutuates and I have to be flexible to addopt changes in my life.
I'm new to this forum too and one of the reasons that I decided to be a member of Neurotalk was that I had a very good impression reading the posts here.
Good luck.

Hi, ibeeanurse. First, you were very lucky to get a diagnosis. Most neurologists will rule out MG when everything is normal, without going to the SFEMG. You were very fortunate in your neuro. I wish I had a power chair for those really bad days. Mostly I cope by watching my activity, using a cane on bad days, and using the electric carts available in many stores.
You probably need to start with your neuro. Talk to him about getting a power chair, and see if he will prescribe one for you. Then talk to your insurance company and see what you have to go through to get it.
Hope you get one!
Hugs,

Thanks bluestone. I have more bad days than good days it seems too. I am just beginning to accept this disease. I went thru denial, anger and grief because as a nurse I wanted answers and not the ones I got. I never thought I would have something like this but God has a plan for us all.

thanks loisba. I have read your postings and enjoy them very much because of your helpful and supporting attitude. I don't know of anyone with MG in my area so I'm glad to have this forum.

I understand, ibeeanurse. I'm still fighting to accept this disease. As you, MG and my work don't match. I don't know what I will do and hope too God has a plan for all us.
Today one of my brothers passed away. I'm so so sad. I saw the sadness in my others brothers face. Hope all they find confort in their hearts...

I agree with you, ibeeanurse. I also read Lois postings and enjoy them very much because of the helpful and supporting attitude.
Thank you Lois!

condolences
 

I'm so sorry bluestone about your loss and my thoughts and prayers are with you and your family. :hug: