Help With Ltd Needed

[Sarah4444]

Now that I know what is wrong with me and I have official diagnoses of POTS and a connective tissue disorder, I need to appeal my LTD application. Does anyone have any advice? I know that there is a right and wrong way to do this and am afraid with all the brain fog I'll mess it up. Are there any studies about how disabling POTS can be? I'd really appreciate any input on this one, I'll be in serious trouble if it doesn't work out. Thanks in advance, everyone.

[Crow]

Now that I know what is wrong with me and I have official diagnoses of POTS and a connective tissue disorder, I need to appeal my LTD application. Does anyone have any advice? I know that there is a right and wrong way to do this and am afraid with all the brain fog I'll mess it up. Are there any studies about how disabling POTS can be? I'd really appreciate any input on this one, I'll be in serious trouble if it doesn't work out. Thanks in advance, everyone.

There's a discussion group on yahoo that might be helpful to you.

http://goo.gl/oy3O

Also there is a person on the but you don't look sick sub-forum for social security disability that has a bunch of matrix documents that can also help support a LTD claim.

Good luck. I had a ltd claim approved, but I had the diagnosis beforehand and lots of documentation in my medical records and support from my Drs.

[janiedelite]

Yes, there are studies that talk about disability and POTS (http://dinet.org/links.htm, scroll down to disability). Getting the medical diagnoses, testing, and docs to back you up is the next big step. When I had my SSDI hearing, the judge told me that going to a major research center is helpful with validating an illness. She also said it's helpful to have evidence of several different docs who are helping with your treatment (like a primary care doc as well as a neurologist or cardiologist).

I know you're super tired, but your job is now to document your illness so you can present your true functional ability to the LTD folks, and eventually to SSDI. I keep a Word doc of each doc's appt or any phone conversations with them. I also keep a document called "A Day in My Life" where I take one or two pages describing a 24-hour period in my body. It's SO hard for the LTD folks who evaluate your claim to have a real idea of what life is like for you and I've found this document to be extremely helpful.

When I need my POTS doc(s) to fill out LTD paperwork, I try to set up an actual appt with them or at least a comprehensive phone conversation. Our illnesses are so complex and I want my doc to present the clearest picture to the LTD company.

I was able to win LTD and SSDI disability because of extensive medical documentation regarding my illness, personal documentation regarding how my illness impacts my function, medical journal articles linking POTS with disability, and perseverance. Good luck!

[Crow]

Looks a link broke on the page that thankful linked to

Quality of life in patients with postural tachycardia syndrome is here now:

http://www.mayoclinicproceedings.com/content/77/6/531.full.pdf

[Crow]

ps I bought a couple dinet DVDs too for my lawyer and or SSDI for whenever my application is denied the 1st time.

[comfortzone]

A nice book to have on hand is Dr. Tinkle's new one on EDS - called the Joint Hypermobility Handbook - in it is a chapter devoted to social security -- and what they look for etc. It's basic info - but heck it's a great book and on top of that it's all about you.......the EDS patient. This book is on the heels of his first book in 2008 - Issues and Management of Hypermobility (for HMS and EDS-HM) which was a best seller in four book categories. I find him an amazing resource ... so much so I had him sign or autograph my book when I met with him earlier this month!

Thanks for the great tips on disability given by the others that posted here........this is so helpful -- there is also a book called Persistance is Power - a real world guide for the newly disabled --- with lots of info that one could find helpful for trying to get social security benefits and other ltd bennies when disabled.

Blessings your way!

[comfortzone]

Looks a link broke on the page that thankful linked to

Quality of life in patients with postural tachycardia syndrome is here now:

http://www.mayoclinicproceedings.com/content/77/6/531.full.pdf

This is very interesting and helpful - thank you! I swear when I read the charts provided in this article about all the different bodily things that suffer with/or for having POTS - I have them all - but no POTS..........I just don't get it....

Vasomotor issues, sleep issues, digestive (gerd), constipation, orthostatic intolerance.......and more - but yet because my actual heart rate that runs 100 at rest without meds........doesn't jump up 30 points or more I don't have POTS...... Instead I have all the disability and such .... but no 'title' or name for it.....

That's why I must afford one last visit to an EDS/HM specialist......to ask what's what by their opinion......I'm messed up on so many different fronts ... fromm distressed joint replacements to EDS to pots-like stuff and chronic pain...muscle weakness and neuro things......Yet I see I need to actually begin a diary of sorts of how it is to live in my shoes in a real world where many never struggle to get out of bed, to walk etc....

Thus far disability is granted by arthritis alone. A 'way down the road' effect of all the other issues that were progessing of which I was so ignorant of.......It's so hard to have your "job" turn into seeking doctors and wisdom as you progress from one aspect of your disability to another - employing so many specialists!! It's enough to make you crazy if you weren't already.....you get so so tired....

But whine? LOL no not me hahahaha! Yes lately I whine too much - and prolly would do well to 'fine wine' and relax a bit about it all and have a good laugh..........crying gets me nowhere!