1. < Neuropathy

Neuropathy & applying for Disability

Posted by valec @valec, Oct 16, 2023

Has anyone applied for social security disability due to their neuropathy pain and restrictions from it? I’ve applied and was just declined. Which I knew would happen. I’ve had peripheral neuropathy for about 13 years. I don’t sleep but maybe 3 hours. I’m on lyrica and medical marijuana in gummy form. Doesn’t help much. But I decided to apply for disability on the advise of my doctors. Who all support the decision. My balance is off. My pain is 24/7. My cognitive skills have suffered. I can’t stand or walk more than 15-30 minutes at a time. Just doing basic housework is a problem. Then there’s the side affects of lyrica which is swelling in my feet. And side affects of the gummies which are feelings of lethargy.
Just wondering if anyone has applied for disability due to their neuropathy.
Thank you.

Interested in more discussions like this? Go to the Neuropathy Support Group.

artemis1886 | @artemis1886 | Oct 22, 2023
In reply to @valec "Gotcha. Thanks. Someone here suggested that as well. I truly appreciate all of the suggestions. I..." + (show)
@valec

Gotcha. Thanks. Someone here suggested that as well. I truly appreciate all of the suggestions. I have to say - neurologists have not been helpful to me in the past. The last neurologist I saw was 6 years ago when he diagnosed me with bone cancer because the Mspike in my blood was high. And according to him, bone cancer was the reason. Told me I had 3 months to live. (After a crying spell in my car when I left ) Went back to my hematologist who told me the reason my Mspike was high was because my blood count was 5. So after getting iron infusions and subsequent blood work done, needless to say I don’t have bone cancer. The two other neurologists I’ve seen in the past were quacks. They both said I had insignificant neuropathy and they don’t know why I’m complaining of pain.
Sent me on my way without helping me. My General practitioner said neurologists are diagnostic and don’t help people with their issues. They just diagnose. With all that was said, I trotted off to pain management and there is where I stay for the time being.

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I have been referred to the University of Boston Dr Anna Outlander. She started her research into neuropathy in 2017. I listened to her lecture on you tube. What I dislike is neurologists do not give you the long term prognosis. Small. Fiber neuropathy which is also called autonomic neuropathy affects heart, kidneys, bladder, and stomach gastroparesis. It also affects swallowing and speech. It is very frustrating when the bladder goes and you’re in public. When it starts affecting your bladder I set my cell phone every hour and go to the restroom even if you do not feel like you have to go. That’s been my solution to keep from urinating on myself in public.
Neuropathy comes in many forms since you have SFN you probably have peripheral neuropathy the EMG/Nerve Conduction test have to be given together for positive diagnosis.

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artemis1886 | @artemis1886 | Oct 22, 2023
In reply to @artemis1886 "I have applied for SSID. They automatically denied me. I had to hire an attorney for..." + (show)
@artemis1886

I have applied for SSID. They automatically denied me. I had to hire an attorney for an appeal. Now I keep getting these letters giving me less than three days to respond. Then they threaten to cancel it. I wish they would where we can set our court date.

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Just an FYI been over a year and a half.

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bharty615 | @bharty615 | Oct 22, 2023

I was diagnosed with neuropathy in right leg and partially in left leg . If i applied for ssi does anyone know If i would get help or not? Dr says nothing can be done for it.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 23, 2023
In reply to @bharty615 "I was diagnosed with neuropathy in right leg and partially in left leg . If i..." + (show)
@bharty615

I was diagnosed with neuropathy in right leg and partially in left leg . If i applied for ssi does anyone know If i would get help or not? Dr says nothing can be done for it.

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Welcome @bharty615, Not sure anyone can say for sure. The Foundation for Peripheral Neuropathy also has some information on the topic here:
— Getting Help for Peripheral Neuropathy Social Security Benefits:
https://www.foundationforpn.org/5217/

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dianawinkler | @dianawinkler | Oct 23, 2023

My husband got approved for disability the second time he applied. His Mayo neurologist helped him with a detailed physician statement and filled out the appropriate
paperwork. He did have an attorney group Brown & Brown who we had a good experience with. It can be done.

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valec | @valec | Oct 23, 2023
In reply to @artemis1886 "I have applied for SSID. They automatically denied me. I had to hire an attorney for..." + (show)
@artemis1886

I have applied for SSID. They automatically denied me. I had to hire an attorney for an appeal. Now I keep getting these letters giving me less than three days to respond. Then they threaten to cancel it. I wish they would where we can set our court date.

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I wish you the best with this fight 💪🏼

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artemis1886 | @artemis1886 | Oct 24, 2023

SSID would not even began to start working on mine until I had atrophy in both feet. That’s their guidelines according to them. They keep dragging it out. I went to my US a US Senator who is looking into why my case is taking so long. I more than qualify with the severity of the polyneuropathy (not including my heart, kidneys, bladder and everything the neuropathy has affected), it has affected my speech and swallowing, seizures, essential tremors, pericardial effusion, lymphedema, four left hip replacements along with actebulum fracture, and I am having a second lower back surgery, also spinal bifida, I can no longer dress myself, my food has to be cut up and I can no longer do it myself In the mean time I have been referred to the University of Boston plus University of Heidelberg Germany. I think it’s crazy we have to jump through all these hoops.

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1 reply
tprift | @tprift | Oct 24, 2023

Be sure to go through all levels of appeal for SSDI. A very high percentage of denials get reversed on appeal. A lawyer can definitely help if you reach the Hearings Level. It can be a difficult process and am wishing the best for you.

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valec | @valec | Oct 24, 2023
In reply to @artemis1886 "SSID would not even began to start working on mine until I had atrophy in both..." + (show)
@artemis1886

SSID would not even began to start working on mine until I had atrophy in both feet. That’s their guidelines according to them. They keep dragging it out. I went to my US a US Senator who is looking into why my case is taking so long. I more than qualify with the severity of the polyneuropathy (not including my heart, kidneys, bladder and everything the neuropathy has affected), it has affected my speech and swallowing, seizures, essential tremors, pericardial effusion, lymphedema, four left hip replacements along with actebulum fracture, and I am having a second lower back surgery, also spinal bifida, I can no longer dress myself, my food has to be cut up and I can no longer do it myself In the mean time I have been referred to the University of Boston plus University of Heidelberg Germany. I think it’s crazy we have to jump through all these hoops.

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Oh wow. And this stress just exacerbates things 💜💜💜

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1 reply
artemis1886 | @artemis1886 | Oct 24, 2023

The sad thing is you’re right. The electrophsiologist says the more stress the faster it progresses. Cardiac autonomic neuropathy yeah they just told me that a couple of months ago. I would have quit my job a long time ago before 2021. I would have avoided as much as possible. If you can avoid stress. Each year we take my youngest child to Stanford Adult Congenital Heart Clinic in Palo Alto California. You never know if you are having open heart surgery or what. He’s 28. Months

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