PLS Diagnosis - Filing for Disability Help

[seand777]

Anyone with a PLS Diagnosis here on Disability? I am trying to apply and need help with filling out this Function Report Carefully. Anyone have any tips, ideas or suggestions?

Your help would be appreciated

Sean

Diagnosed with PLS/ with Pseudobulbar Palsy October 2011

[sadiemae]

Your best bet is to have your doctor change the D X to ALS. Then you will automatically qualify. Some doctors do not distinguish between the 2.

[seand777]

I am confident that he won't change it to ALS because it is PLS. I hope they take into consideration that it is a progressive MND that should also automatically qualify

[sadiemae]

Some docs say that PLS is a rare form of ALS.

[sadiemae]

Doing a little research, it looks like you may be able to get SSDI, but will most likely have to wait 24 months for Medicare unless your diagnosed is ALS.

[BLPhill]

Yes it is a two year wait for medicare and yes you will get ssdi. Like Sadiemae said, most neuro's will give the diagnosed of als as it can take up to five years and beyond to give a difinitive pls diagnosed.

[HelenL]

My neuro (Mass General Hospital, Harvard Univ., & ALS Clinic at UMassMemorial) considers PLS (UMN) to be on one end of the ALS spectrum, and PMA (LMN) on the other end, but all under the "umbrella" of ALS. Get your doc to rewrite the diagnosis...

[Tokahfang]

If you can't get your paper-diagnosis changed, age seems to play a large part in it. On the HSP and PLS mailing lists, an informal poll showed the vast majority who applied after 50 got it easily, the 40-50's got it with a fight, and under 40's generally got rejected.

[arialB]

Our experience was that my brother, diagnosed at 50, was eligible for ssdi and medicaid without delay. Social Security started after 6 months. Two years later during a brief hospitalization we asked his neuro to write to social security to reconsider his eligibility for a waiver of the 2 year waiting period for Medicare based on the relationship of pls to als. Medicare did eventually waive the 2 year waiting period retroactively. Of course, it would have alleviated a lot of stress had we asked for that waiver earlier.

[BLPhill]

I was diagnosed with pls at age 45. I had no problem getting ssdi, however I had to wait two years for medicaid to kick in. my diagnosed has went back and forth between als and pls so I never bothered to keep ss informed everytime it changed, I'm now glad that I didn't as I'm now back to pls again.

[chrisroski]

I was diagnosed with PLS also, but my neuro put down ALS and I got Medicare immediately with no problem

[nancyg]

I am just wondering how this works for fulltime caregivers. If you are a couple and one person is disabled and requires full time care and the other person cannot work, what happens? It seems insane to worry about financial issues when your plate is so full of horrific life altering issues as it is. Probably a simple stupid question...just wondering. I know two couples, both husbands have had ALS, one for 24 years with his wife caring for him full time and the second couple are going on year 14. If the "patient" gets SSI, is it just that as income for the household?

[billbell52]

I have PLS and I filed about 4 years ago. I am an MDA patient and the MDA social worker recommended filling out the paper work the best I could and then make an appointment with the SS office and review it with the case worker. Be honest. I paid for Long Term Disability (LTD) Insurance with the company I worked for so they insisted I use a service to apply. It took 4 months to be approved but they pay you from the time you apply. I clearly have PLS and my doctor would not say it is ALS. SSDI helps but won't cover expenses. My wife still works and shortly I'll get my retirement pension. I am wheelchair bound but can still transfer to my chair. I do not need full time care. Medicare does cover some care. I have not used it.

[Whitetiger]

I filed for ssdi and was approved 4 months later on first try. I have severe PA as well as a diagnosis of pls. Be very detailed & get your doctors to fully support you with letters. Also if you can get your PCP to fill out the residual form, it's called something like that, it will help a lot. I had friends write letters on how they saw my health change over the years, I think it helped with a quick approval.