Hi, I was diagnosed by Dr. Ashizawa at UF that I have 'truncal ataxia' last week.
I called back his office, his assistant told me I got ataxia for unknown reason, idiopathic ataxia.
Dr. suggested that I could for disability insurance if I want to.
Right now, I am still working full time and found the fatigue is my no. 1 enemy so far.
I guess I will need to apply for SSDI some day but my problem is: all my testing results come back negative! These include CT scan, a lot of blood tests, Lumbar Puncture, 4 MRIs, EMG.
So the only tests that are positive are those carried out in clinic by neuros, gait, weekness especially.
What is the chance I could be approved by gov for SSDI? Do they judge by doctor's evaluation?
I am so worried I may need SSDI some day even though I want to work as long as I can!
Many thanks in advance! Any input/suggestion is highly appreciated!
My wife was in exactly the same situation as you. Tons of reports stating not ALS not Parkinson’s, not MS, not spinal cancer, not Mad Cows Disease, not, not, not…
She was approved for SS disability immediately based on undiagnosed peripheral neuropathy, imbalance and speech pathology.
Then 6 months later we finally found an LLMD and was diagnosed with Lymes Disease. It is now under control and she is on the long slow path of neuropathy healing.
I will give it a try to apply for SSDI when work is too much for me!
By the way, did you use a lawyer for applying for SSDI for your wife?
Thanks!
Chris
EdMoose said:
My wife was in exactly the same situation as you. Tons of reports stating not ALS not Parkinson's, not MS, not spinal cancer, not Mad Cows Disease, not, not, not..... She was approved for SS disability immediately based on undiagnosed peripheral neuropathy, imbalance and speech pathology.
Then 6 months later we finally found an LLMD and was diagnosed with Lymes Disease. It is now under control and she is on the long slow path of neuropathy healing.
Hi I used a lawyer when I filed as they knew the ropes. I am 59 and had imbalance, gait issues, slurring and terrible fatigue. It turned out to be Ataxia. I understand that there is now a fast track on the disability list for Ataxia. If your medical team determines that you have the disease you immediately get disability. You should look into it. Good luck.
Hi Suzi, thanks for your reply! I will find a lawyer for consultation.
I feel like there is a 200 pound heavy on my shoulders in the afternoon. I guess my shoulders are weak and my trunk is weak too. That worries me and I am thinking about how long I can continue to work. I love my job and SSDI will be my last option.
I am so moved by people's replies on this site! I feel much better when I see these.
Suzi said:
Hi I used a lawyer when I filed as they knew the ropes. I am 59 and had imbalance, gait issues, slurring and terrible fatigue. It turned out to be Ataxia. I understand that there is now a fast track on the disability list for Ataxia. If your medical team determines that you have the disease you immediately get disability. You should look into it. Good luck.
By the way, did you use a lawyer for applying for SSDI for your wife?
Hi Chris
We didn’t use an attorney. But remember that my wife has a dedicated advocate & care giver. So with my organized documentation, in a chronological portfolio, the technocrat SS had a what they needed.
I used a lawyer after I had filed a year before and was denied. I was approved. Since then the requirements have changed and its not difficult I would check with your local SS office they will help you fill out the forms.Good luck.
I used a lawyer after I had filed a year before and was denied. I was approved. Since then the requirements have changed and its not difficult I would check with your local SS office they will help you fill out the forms.Good luck.
I think maybe when you first file you may have to be unable to do your job anymore, after you are approved you may be able to do some work then. When you apply you do not want to at your best so you should stop your meds so they can see you are really disabled. If your on your meds and are doing good they usually don't approve I think. If you are in bad shape you can demand the hearing to be in your bedroom I believe. Jerry
Chris , I think the lawyer made it easier, but since I file it's been made less bearucratic. I have a sister who has ataxia, she filed her claim herself with the help of the people at the SS office she was approved her first try.
All of my tests are negative too; I'm diagnosed with ataxia based on my symptoms. I worked until I couldn't work anymore, then I applied for SSDI. I did not use an attorney, advocate, or anyone else to help...I simply applied online at ssa.gov. Then SSA sent me forms to fill out. I did not stop taking my meds. No one at SSA actually sees you; they will ask your doctor to fill out paperwork about your ataxia. I was approved in a month. There is a 5 month "waiting period" between when you stop working and your first check, so try to plan ahead for that. I hope this helps.
Thank you for the information! I will probably do the same as you did. My walking and driving are still OK.
My No. 1 enemy now is fatigue! I am so worried about this fatigue symptom. How did you cope with fatigue during work?
Chris Grace said:
Chris,
All of my tests are negative too; I'm diagnosed with ataxia based on my symptoms. I worked until I couldn't work anymore, then I applied for SSDI. I did not use an attorney, advocate, or anyone else to help...I simply applied online at ssa.gov. Then SSA sent me forms to fill out. I did not stop taking my meds. No one at SSA actually sees you; they will ask your doctor to fill out paperwork about your ataxia. I was approved in a month. There is a 5 month "waiting period" between when you stop working and your first check, so try to plan ahead for that. I hope this helps.