Hi Im new here. I was diagnosed with MG in march, its a long story will tell another time. I signed up for disability. I haven't been able to work. Symptoms are really bad. But I wanted to know if anyone has had a medical exam from Ssi? If so what did it consist of. I'm really nervous about it. Also I have a physcological test scheduled for the day after. Says it will be an hour long. Can anyone give any insight on what these test are going to be like?
Thanks
Lisa

Welcome! I have no experience with SSI - but there are some folks here who have. It's the weekend which can make getting answers here a slower. Hope someone with SSI experience sees your post soon.

Good luck ... and I'd love to hear what it was like after you finish the interviews!

Hi Lisa,

I have had MG for 27 years and I am just now appling for disability. I haven't had to do an exam yet but I can tell you what others have told me. Whatever kind of day you are having that day, treat it as if it is your worst day. With MG we have good days, bad days, good times and bad times, But most people don't understand that especially Disability. They are basing their decision on how you respond at that time.
Sorry I couldn't tell you more about the exam. Hang in there it does get better.

Dena

Every day I have trouble with speaking, chewing and swallowing. The weakness I get too goes right from my feet to my fingers. Also double vision happens a lot. Even with the Pyridostigm I get these. The heat makes everything so much worse as well. I take Mestinon Timespan every night.
See I went so long going to the doctors trying to find what was wrong the symptoms progressed to the point I was dying. I went to walk in clinics, desperate to get a diagnosis. They gave me steriods, thinking it was a sinus infection because I could not speak without sounding nasal...
I lost so much weight not being able to eat or swallow before I was diagnosed. I Even went to the emergency room, they told me it was Acid Reflux and sent me home telling me to get Pepcid and to go to a ENT. days later, I got an appointment to an ENT. I had a real hard time getting there, I was so weak and I could not speak. It comes out like rambling, nasal quality vary hard to understand. The doctor said " You don't need me, you need a Neurologist. " A few days later I had an appointment with a neurologist. Thank God for her, she told me what I had within 5 minutes.
Its been 5 months since that day, my medication keeps me alive but even with that I can no longer function the way I used to with a full time job, even part time.
I sorry, I rambled on but its just so scary. that two appointments will determine if I am disabled.

thank you for reading...

Hi Lisa,
Sorry you are having such a hard time and feeling so poorly. There are many more treatments besides pyridosigmine (mestinon). When I was in bad shape they put me on prednisone which straightened me out a bit but had many side effects. Currently all I take is mestinon and just deal with the daily weakness and other symptoms. Many take either cellcept or imuran and there is IVIG therapy. Read some of the other threads on this site and you will find a lot of info. Talk to your nuero about all of these options and find out which is best for you. Hoping you feel better.
Al

I found out that Monday I have a functional capacity evaluation scheduled by ssi. I really hope that alone doesn't determine if I am disabled. Has anyone with myasthenia had a test like that before?
As for medications, my family has a history of heart problems so any type of steroids is a big, no no.
thanks, i will def. talk to my nuero about options.