Hello everyone
I am 47 years o
ld and have just been diag with HD. Now I havee an appt 4-18-2013 with a neorogists to confirm diag. But my doctor is convinced I have it. Had a ct scan done which came back abnormal.
So becuase I have been unable to keep a job because of the forgetfulness I am using an attorney for my first attempt to applying for ssi. If anyone has tips on this I would greatly appreciate the information.

Thank you in advance

Nancy

Hello Nancy and welcome. Great support here.

I too used and attorney. It's your chance to take. It took me a year but that is better than some with various problems that take longer. Document well, use additional paper for explanations, make sure your Dr. has the complete story. My experience says say nothing to the Dr. originally abut SSDI. I think it sets off some sort of alarm and they tuck tail instead of doing the right thing. Don't use short phrases that don't paint a real picture. Be honest in your answer. It's hard to describe our issues but try. Activities of daily living, etc., can be menacing but you can do it.

There is a dept. in SSA that is the virtual screening unit that looks at those originally declined and if they pick it up you will an opportunity to have it re-reviewed prior to a hearing which is a good sign.

Best of luck,

Mike

wow Mike thank you for your input. My doctor was the one who suggested that I file for ssi and told me he would fight for me.
Did your attorney file your original claim or did you ?? I ask because there was a congressional act passed last year that allow our cases to be expidited and we also do not have to wait 24 months for the medical portion it is immediate. I am so lost since being diag that I am trying to take care of everything before I can't walk and as soon as I am done with that its Vegas Baby

Pleasae read over Phil Hardt's page. It's packed with a ton of stuff for your exact situation.

[www.hdlf.org]

Pete

Thanks for sharing that Phil Hardt's page. It is really interesting for me.

It was my attorney. There was so much going on between symptoms, leaving work, the financial dilemma it causes, etc. HD was not on the list at the time I filed. I'm not so sure I wouldn't try it on my own if I had to do it now. If you aren't comfortable get a close friend whom you think would be good at this and get them to help. Phil Hardt's information is pretty detailed and helpful if I remember correctly.

What state are you in?

Mike

I am in Indiana and my attorney seemed to be very familiar with the "terri" provision for terminal people such as us. I am taking a copy of Phil Hardts article with me when I see him in about 2 weeks and if he doesn't follow it I will fire him on the spot and I plan on telling him that.
That man seems to know alot about this.
Monday is my day for 1) food stamps 2) filing bankrupcy 3) medicaid application

Geez so much to do to have my life in order.

Mike I am not trying this important part of my life on my own my lawyer is going to do the filing. I am walking in with Phil hardts writings. my ct scan results, and my neorolists report, and my life story for the past year. Had I had any idea that something was wrong with me I would have taken care of it sooner but as we all do we or I just think that twitching is something new with age.

I will let you all know when it is filed and when it is approved.

I pray for all of you as you do for me

Nancy,

Have you had the blood test? That's the only way to make a positive diagnosis. There are folks who appeared symptomatic and then tested negative.

Will

Will I had a series of lab tests done by my doctor I have a print out. Do you happen to know what test it is that gives the Diag ?
If it wasn't done I will have my doctor order it asap. Thank you for your input

Will I have searched high and low and do not a lab test for this disease there is genetic testing and dna. Please let me know what the name of this lab test is ?

Thank you
Nancy

HDSA has a webinar coming up on March 25 titled: Applying for Disability Benefits for HD: The SSA Perspective - May be of some interest.

[www.hdsa.org]

Nancy-
The test for Huntington's Disease is not a lab test which your doctor would simply order and give you the written results. The process is quite complex and the results not always crystal clear. You would know if you have had the test. Which of your parents had HD and why does your doctor say he is convinced you have it? A cat scan would be of no use in diagnosing HD and might only be useful in very advanced cases when read by an HD scientist. I am sorry you are ill and fear that you have Huntington's Disease, but quite frankly you have not presented concrete evidence that you have it. I would certainly solidify your diagnosis before applying for SSDI. Best wishes,
Howard

Thank you for clarifying there isn't an easy lab test to test this. This is all new to me but I am someone who takes care of things in advance.
Tru the neorogist is the one to diag but my ct scan show shrinkage of the brain and abnormal results. I also have twitching feet sll night long my finger tap constantly memoriy of short term is really bd nd I walk holding wall because my balance is wy off. SO I am no appliying till I have the diagnosis from a neorogists I am just freaking out over this. Thank you for your input on the lab tests. Very helpful to me.
April 17th is the big day I will let you all know.

Nancy,
I feel badly for you and understand that something is wrong. As someone who has lived the HD nightmare for two generations, I am just not sure where you are getting HD from. Did one of your parents have it??? You can not have it unless one of your parents had the HD gene.The point that I was trying to make about the HD test is not that it is complicated, rather that because of procedural protocal it is a test that you would know that you had. Also, no reputable doctor would diagnose HD based on an abnormal cat scan and symptoms. It is not my place to say that you don't have HD but the symptoms you described could be caused by so many illnesses. I hope someone figures it out for you.
Howard

Go easy on me Howard. Geez
Yes my mother and her mother have been diagnosed

Sorry if we're confusing you. Let me try again. The testing protocol Howard is talking about is complicated. It involves genetic counseling, neurological evaluation and a psychiatric evaluation. However, the only definitive way to tell if you have the HD gene is with a blood test.

The results are called CAG counts, which will tell a doctor if you have the genetic mutation. Everyone has two things called alleles - one from each parent. For example, if you had counts of 18 and 19, you did not inherit the gene. If one of them was 42, you did inherit it from one parent. 40 is generally considered the lowest count that guarantees the disease. There is what is called a grey area from 36 to 39 where you may or may not develop the disease.

If you had the blood test, there should be two numbers listed as described above.

Will

Never meant to be hard on you!! I hated to see you stressing out so much over something that wasn't likely. You never mentioned a parent having HD (even after I first asked). Now that you have, that changes the picture completely. I just couldn't understand why the doctors suspected HD and didn't test for it. Again, I do wish you the best because I really understand HD's impact and would never want to see anyone impacted by it!

Hi Gabbi.

Welcome to the forum. I can vouch for both Howard and Mike and many on here, we only want to support and help you. Howard's intentions are to make sure you explore the options. I have 2 friends right now in our HD support group who ended up testing negative for the gene, but have symptoms. When applying for SSDI, you do want to make sure to make a very strong first application. (now diagnosed with atypical dystonia)

HD, both juvenile and adult onset forms, has been granted compassionate allowance by the Social Security Association. What this means is, if your application contains a solid diagnosis for HD, with CAG test (and likely the CT) , you will be approved. This is a great accomplishment for the HD community, as many will no longer need to go through the denial and appeals process. Next hurdle is to get the HD Parity act approved to qualify for medical benefits at the same time as disability benefits. There is currently a 2 year waiting period to qualify for Medicare benefits. We are hoping to eliminate that wait, and obtain benefits for many who need it so much.

Good luck in your application. Please continue to visit the forum and let us know how you are doing.

Take good care,
Patty

My phd had symptoms as you did Gabbygirl and his Neuro didn't require any genetic counseling or a psych evaluation.
It will depend on the Dr. and your symptoms. Time was of the essence in our case because he was on medical leave from work
and they needed a diagnosis or he was going to have to return to work or get fired.
Every Dr. and situation is different and if you have a family history they may speed the process along.
I agree that having the test results will give you a much greater chance with SS. We sent along everything we could even though
the instructions from SS say not too. Phil Hardt's instructions are wonderful and my phd was approved on the first go.
Good luck.

My husband didn't go through genetic counseling either. We were unaware of the family history as my husband hadn't seen his father or father's relatives since he was a child. We went through months of testing for many neurological conditions which concluded with the genetic testing and the HD diagnosis.
When his company forced him to go on medical leave, his long term disability insurance contracted with a third party company (ALLSUP) to help him apply for SSDI. They guided us through all the questions on the SSDI forms, gathered all the necessary documentation, and submitted everything to social security for him, and he was accepted the first time. I don't know how much lawyers charge for this type of service, but it may be worth comparing the costs, etc... and success rates between the two and hassle of doing it yourself. We were already stressed out trying to deal with managing the symptions so this took a burden off our shoulders.
Good Luck to you.