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Old 02-06-2010, 05:44 PM   #1
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hopeful gal HB User
Is anyone working that has Myasthenia Gravis?

I was diagnosed 6 months ago with MG. I had the droopy eyelids to where they were little slits for me to see thru. I then had the double vision, extreme weakness in my arms and legs, trouble with swallowing and now it seems a big effort to breathe normally sometimes. The Pyridostism, Prednisone, and Mestinon have not helped alot other than my eyes stay open more. Now I just look tired all the time. Because of all these issues I had to close my daycare business and now I am without a job. I do not have any way of paying my bills except for my father helping me out. I am not married and my children are not financially set enough to carry their mother through this hard time. I don't have any insurance and the dr. is wanting me to have more testing as he thinks that I might have 1 or 2 more autoimmune diseases coming on. Has anyone else with MG been in this situation? If so, what did you do? I applied for Social Security Disability and was denied. My doctor keeps saying that most people can have a "relatively normal life", but I am not seeing it at this time! I also applied for Medicaid and was denied. I am at a lost as to how people with this disease are being able financially take care of themselves. Someone please answer with some ideas for working with this disease!! Waiting to hear back from you.

 
Old 02-08-2010, 04:01 PM   #2
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Post Re: Is anyone working that has Myasthenia Gravis?

Probably Social Security needs more information about how this disease effects your ability to work and to do activities of daily living. If your MD is not supportive, its more difficult but you could have family members document their observations of how this has effected you. Are you depressed and if so have you been treated? This helps as well. Document side effects of your medications. Do they make you sleepy? nauseated? etc.
Have you changed your lifestyle, lost or gained weight, not interested in things you used to enjoy.
Its so much more than your diagnosis. I'm sorry your physician is not supportive of your social security application.

 
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Old 02-10-2010, 10:46 AM   #3
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Re: Is anyone working that has Myasthenia Gravis?

Thank you for your reply. I am appealing the SSDI and hope for the best. Do you know if most people with this disease get disability? I have been trying to figure out what type of work I could do, but at this point I really don't think that I could work. Especially with my eyes' messing up all the time. Do you know of any organizations that can help with financial issues? Please let me know. Thanks.

 
Old 02-11-2010, 11:30 AM   #4
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Re: Is anyone working that has Myasthenia Gravis?

Quote:
Originally Posted by hopeful gal View Post
I was diagnosed 6 months ago with MG. I had the droopy eyelids to where they were little slits for me to see thru. I then had the double vision, extreme weakness in my arms and legs, trouble with swallowing and now it seems a big effort to breathe normally sometimes. The Pyridostism, Prednisone, and Mestinon have not helped alot other than my eyes stay open more. Now I just look tired all the time. Because of all these issues I had to close my daycare business and now I am without a job. I do not have any way of paying my bills except for my father helping me out. I am not married and my children are not financially set enough to carry their mother through this hard time. I don't have any insurance and the dr. is wanting me to have more testing as he thinks that I might have 1 or 2 more autoimmune diseases coming on. Has anyone else with MG been in this situation? If so, what did you do? I applied for Social Security Disability and was denied. My doctor keeps saying that most people can have a "relatively normal life", but I am not seeing it at this time! I also applied for Medicaid and was denied. I am at a lost as to how people with this disease are being able financially take care of themselves. Someone please answer with some ideas for working with this disease!! Waiting to hear back from you.
hello, my name is jashawn. i just found out i had Myasthenia gravis like 3 weeks ago. i also have thyroids problems. well i stared to have problems like last year in 2009 at the end September i was doing everything on my own and when i was going to the doctor they keep saying that it is my thyroids and when i went to go apply for my disability the doctor told me it have to be something other then that, so i went back and they gave me plenty of medication and it was working at first then it stop but when i went back for another check up they had to keep me in the hospital because i was breathing rite and they stared to clean my blood out and then they ask how do i feel about the surgical at first i was like its no other way to try to help this out, but anyway im in the hospital now writing you because i went on and had the surgical in my chest and i'm not able to work so u mite have to file again for your ssi again cuz its really nothing u could do. or get an lawyer to help u out. but we could talk more bout it call me 404-509-7658. bye for now

 
Old 07-27-2010, 10:39 AM   #5
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pollypeck HB User
Re: Is anyone working that has Myasthenia Gravis?

Quote:
Originally Posted by hopeful gal View Post
I was diagnosed 6 months ago with MG. I had the droopy eyelids to where they were little slits for me to see thru. I then had the double vision, extreme weakness in my arms and legs, trouble with swallowing and now it seems a big effort to breathe normally sometimes. The Pyridostism, Prednisone, and Mestinon have not helped alot other than my eyes stay open more. Now I just look tired all the time. Because of all these issues I had to close my daycare business and now I am without a job. I do not have any way of paying my bills except for my father helping me out. I am not married and my children are not financially set enough to carry their mother through this hard time. I don't have any insurance and the dr. is wanting me to have more testing as he thinks that I might have 1 or 2 more autoimmune diseases coming on. Has anyone else with MG been in this situation? If so, what did you do? I applied for Social Security Disability and was denied. My doctor keeps saying that most people can have a "relatively normal life", but I am not seeing it at this time! I also applied for Medicaid and was denied. I am at a lost as to how people with this disease are being able financially take care of themselves. Someone please answer with some ideas for working with this disease!! Waiting to hear back from you.
hi i just paste myself im still working as a bridal consultant its the heat that kills me ive had my thymus gland removed im awaiting to hear from my consultant again now cant wait to get off the steriods though i was on 12 but on 2 now thank god id gained 3 stone

 
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