Disability

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We get many questions about disability--and how to go about applying for SSDI.

It is possible to get SSDI when you have NS. You will need to call your local Social Security office, and either go by or ask them to mail you the application.

Once you have been unable to work for 6 consecutive months-- you need to get the ball rolling on your SSDI. It is important to make sure you meet all their deadlines--as any interruption in not getting the forms in to them, can make it so that you have to go thru the whole process again--and you lose your start date if you don't comply with the deadlines.

You want to get the names and addresses down of all the MD's you've seen. You will want copies of your medical records sent to SSDI (Soc security will give you a "Release of Med Records" form to sign). Also, request a copy of your medical records be sent to you. That way you have the information also.

The easiest way to request a copy of your records is to ask for a copy of your XRAY, CT's, Labs, MRI's--etc. when you go into the office for your appts with the MD. Keep a folder--so that as you go from specialist to specialist--you can give them the copy of the latest work that has been done. (Your MD's may be slow to get this to the other MD's--so hand carry your reports.)

Write down your symptoms, and how they effect you. For example, if you can no longer go grocery shopping without being so exhausted that you're down in bed for the next couple of days-- state that.

If you find you have problems remembering things--write it down. If you can't finish projects--write it down. If you don't know where you parked your car because of short-term memory loss-- write it down. If you need a cane, or oxygen, or a powerchair to get around--write it down.

If you need help with the finances because you can no longer get your bills paid on time--or can no longer balance the checkbook--write it down.

If you've lost the ability to enjoy sex, or have problems with family not understanding what has happened to you-- write it down.

Stress what you have lost due to chronic illness. Don't powder coat it-- tell it like it is.

Even if you don't have biopsy proven sarcoidosis-- yet have all the pain, neuropathy, the comprehension loss, the short-term memory loss, the exhaustion, fatigue, etc. there are tests that can prove the "subjective complaints" that you're trying to get the MD to understand. This test is Neuropsych Testing. This test can prove to the MD's that you aren't faking (malingering) and that depression alone is not the cause of your problems. So don't be afraid to request that your MD set up an appt with a Neuropsychiatrist.

EMG's, EEG's, Sleep Studies, are also good tests to have done. They show brain waves (or slowed response in brain waves) and can also prove that there are problems that may not show up on CT's or MRI's.

You will need several friends, bosses, co-workers or family members to write letters on your behalf that state what they have seen in the way of changes. If you have a close friend that you work with--and they can state that you used to "run the office", be able to "problem solve" or "multi-task"--and now aren't able to get the paper to the desk before you forget what you were trying to do-- have them write it down.

If you've got a good friend that can attest to the fact that you can hardly carry on an intelligent conversation--or finish your sentences when you're talking--ask them to write it down. (SSDI will ask for 2 or 3 references).

If you can't comprehend what you read--or if you have to reread everything multiple times before you understand it-- write it down. If you find that filling out the form to apply for your SSDI is too hard to do--so you have someone helping you-- let them know that.

These are all things that will help you get approved for your SSDI.

There are articles in our LINKS section that relate to this topic. Here is the address:

http://groups.yahoo.com/group/Neurosarcoidosis

Go to the LINKS and check out the folders and different sites. Also in the ARCHIVES you will find many posts about disability and SSDI, SSI as well as the tests and exams that should be done.

Please let us know if we can help you further.

Sincerely,

Tracie

NS Co-owner/moderator