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Old 06-18-2007, 10:55 AM   #1
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Currently on SSDI-Change In Diagnosis

Hi, new here to HealthBoards.

I just posted in the neurological section of this board.

I was approved for SSDI just over three years ago; expecting CDR form any time.

Last year I moved from one state to another to be near family due to my illness.

Unfortunately, after my move I had to change doctors, and my new neurologist does not believe that I have the illness that I was diagnosed with in the state I previously lived in. I have been going through numerous tests; they are not showing evidence of my illness, although a SFEMG performed by my former neuro did "prove" myasthenia gravis.

I still have the same "symptoms", although the new neuro says they are "atypical". (Umm.....my knowledge of my illness says that myasthenia gravis affects everyone a little bit differently - it is called the "Snowflake Disease".

My new neuro is suggesting other illnesses, possibly Chronic Fatigue and or Fibromyalgia.... even suggested that my symptoms may be from stress.

Oh my goodness.....now THIS situation - with the new neuro - is causing me extreme stress and depression and worry.

I still have all the symptoms and problems that enabled me to be approved for SSDI on my first submission. Even more symptoms because now I have an arthritic condition that is showing (x-rays) of one hip - and I probably have the osteoarthritis in other parts of my body.

BUT I AM SO WORRIED that if I am reviewed, that this "undiagnosising" of my illness (myasthenia gravis), might mean my SSDI and LTD will be taken away.

By the way, I was 100% diagnosed with myasthenia gravis with a SFEMG performed by a highly recognized neurologist in the state I used to live in.

Does anyone know what would happen if a disabled person has two different opinions of diagnosis?

I know I am ill and very limited with my daily activities and cannot work.

I am open to the possibility that perhaps I do have CFS and/or fibromyalgia - but I have not been sent to any other doctors for diagnosis of these illnesses.
Neuro will make final determination of my myasthenia gravis in about 2 months when I return to the office, after being on a higher dose of medication prescribed. Then, if neuro still believes I don't have this illness, I guess I am looking at going to new docs for diagnosis, etc., and WHO knows how long that could take??

Does anyone know what SSDI would do? I have read that approval for SSDI for CFS/Fibromyalgia is more difficult. (I also have a diagnosis of depression and anxiety now - related to my adjusting to living with a chronic illness.)

I am so overwhelmingly stressed and worried about this; without SSDI I will don't know how I will survive. The anxiety I am feeling is affecting my health very much.

I have very little family; the family I moved to be close to is financially strapped and have no room for me to live with them, and they certainly could not support me.

I would appreciate any guidance, support, and information about how SSDI might handle my situation. Would the evidence from a previous (positive) test and hospitalization for my illness (just over a year ago) support my diagnosis?

Please help....thanks very much.

 
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Old 06-21-2007, 07:54 AM   #2
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Re: Currently on SSDI-Change In Diagnosis

If I had a diagnosis from a reliable Neuro I would definately NOT continue with this new one. Have you sought a different Neuro? (I ask because I know some areas don't have very many near by.)
I wonder why he put you through new tests when you have a diagnosis? Didn't he review your old tests? Did you get your file before you left your diagnosing neuro?
From what I understand of the system, one differing opinion doesn't matter as long as you have two agreeing ones.
Good luck with your review and try not to worry too much. Once you have SSDI it is harder than you may think for them to take it away, because they have to prove that you have improved. (doesn't sound like you have)
It might not hurt to contact your diagnosing doc and tell him what new one says, he might be able to recomend a doc in your new home area.

Last edited by tiresome; 06-21-2007 at 07:57 AM.

 
Old 04-27-2011, 02:10 PM   #3
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Re: Currently on SSDI-Change In Diagnosis

Yes, i would go ahead and try to get a second opinion . A different Neuro doing the tests , and see what he comes up with a diagnoses. Could your new diagnoses be including the one you already have? Or does it contradict your formal diagnoses. Even if it does , go get anther opinion from a different specialist. i think your going to be ok for your CDR. Now you have the mental health diagnoses too. Be sure you have the records for that, or the names and address's of your DR who diagnosed you. Try not to become too anxious about this , because your condtion needs to improve so much that you can work a full time job. or a SGA amount.

 
Old 09-09-2011, 08:54 AM   #4
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Re: Currently on SSDI-Change In Diagnosis

When they do a review I have had 3 they have never ever asked for any new papers from my doctors. They have me sign a paper That ask something about when did you last see your doctor not even asking what doctor and has anything changed...Then they send back a letter saying they are not reviewing any further..Thats all you will get usually when they do review you. A same type letter thats sent to everyone. But I would see a new neuro..

 
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