i am a 32 yr old man, i was diagnosed at about 5yrs old with nf and i have a few complications thus far, but as i have done my own research i have learned a lot of interesting things. i do have a slight curviture of my spine and i do suffer headaches, sometimes so bad, it takes me to my knee's. i get blurred vision and ringing in my ears. but what i do not understand, is that according to my research, i should be more severe than i am. i am not supposed to have as good of eye sight as i do and i have incrediable hearing. i am curious about seizures though. i know there are many different forms of them and i want to know how to recognize them. i also understand that i can qualify for ssi or some other form of assistance. any truth in this? i am open to discussing this and just talking to people that also live with nf. plz feel free to contact me!
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32, and i live with nf
- By disciple4life1998
- Posted November 3, 2009 at 7:33 pm · 4 replies
- In Living with NF1
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- By swtlilwamom
- Posted November 3, 2009 at 10:45 pm
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Congrats on the vision and hearing thats great. NF is so variable...any "textbook what ifs" are just guesses. NO ONE can predict the variability of NF
As for applying for SSI...its not that easy or cut and dry as it is if you are applying for a child. The SSi folks really investigate if you are "disabled".....Ive been there, done that. Send me a msg if you want to know more
- By disciple4life1998
- Posted November 3, 2009 at 11:14 pm
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what are the steps i would need to embark on. its really weird but i find myself more out of it these days and it is getting harder to maintain my concentration. and i have been having problems sleeping lately due to my arm going numb and tingly. been really weird. plus i have several non-cancerous tumors on my body but i can not afford to have them removed.
- By swtlilwamom
- Posted November 3, 2009 at 11:55 pm
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The SSI "crew" is really going to research your medical history. SO be sure you have left a GOOD trail of information with your doctor.
Have the doctors documenting pain, headaches, dizziness, surgeries etc.
Simply not being able to concentrate is not enough for SSI to consider you for disability.
All NFers have the non cancerous tumors to deal with....but what SSI will try to determine, is if it is really affecting your quality of life (sound pathetic, doesnt it? OF COURSE IT DOES!) But SSI still sees you as able to work, unless you are : Blind, deaf, limbs removed, chronic pain etc
And unless you have a paper trail of "evidence", it will be hard to prove you are unable to hold a job.
-----I have a few friends who work on the inside, with SSI claims and I hear all the time, how they have to deny people, who really are "disabled" just because they did not have enough "proof"
---Im here if you have any questions
XXX
Kristi
- By sweetiecat
- Posted November 5, 2009 at 1:20 am
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If you have not had any problems with your NF it will be almost impossible to get SS for it.You have to have some severe problems to get that. Like she said you need a trail of paper work from your doctors saying how sick you have been and not able to work. Do you work now? If you are working now they won't give it to you while you are working.
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