Help With Disability And Getting Dr. To Write A Letter

[RichGotsPots]

Hi everyone,

I'm starting the process of disability and starting by trying to get my POTS specialist to write me a letter for disability.

This is what he said,

"one concern i have about the whole picture is why you have disabling symptoms seated at a desk

pots symptoms should be limited to standing, not seated

i will have to look into this if i can find data on pots symptoms while seated ill write the letter

if there is nothing on that then it becomes difficult to explain"

In other words he thinks I can work if I can sit at a desk. I'm really bad of and some days can't get out of bed. Does anyone have a good response to him, especially research which shows how we are disabled even when seated?

Thank you,

Rich

[puppylove]

You could mention how because of blood pooling, sitting in one spot all day also causes symptoms in POTS patients. Well, it does for me at least.

[Darlene]

i was dx with POTS. my symptoms happen anytime, even when sitting or laying down. when first dx i felt like i was going pass out 24/7, even when i was laying down. not sure why they call it POTS. i just think my nervous system doesnt work right. your nervous system controls things like body temp (i can be hot one minute and chilld/freezing the next) it controls heart rate (i get tachycardia, worse when laying down), it controls pupil dialtion and my pupils look like they r always spasming, it controls respiration (for years i couldn't breath). i can't sit for a long period of time, or stand. i ve been sick for 10 years, kept thinking i was going to get better, but starting to accept that i am not. thinking of filing for disability myself. i feel like such a loser.

and if i did work, it would mean driving, and this i don't do much cause half the time i feel funny. who this that rich, your dr. or the lawyer?

[Dizzysillyak]

A neuropsych eval helped me get disability. It's a group of tests given by a qualified professional that determines your mental and emotional capacities. This would document that you have problems thinking when sitting.

Btw. Didn't you post videos here recently on hypoperfusion and vasoconstriction ? I thought that the info on brain involvement was in there .. I'm a little surprised that your doc doesn't know this.

Tc .. D

[RichGotsPots]

i was dx with POTS. my symptoms happen anytime, even when sitting or laying down. when first dx i felt like i was going pass out 24/7, even when i was laying down. not sure why they call it POTS. i just think my nervous system doesnt work right. your nervous system controls things like body temp (i can be hot one minute and chilld/freezing the next) it controls heart rate (i get tachycardia, worse when laying down), it controls pupil dialtion and my pupils look like they r always spasming, it controls respiration (for years i couldn't breath). i can't sit for a long period of time, or stand. i ve been sick for 10 years, kept thinking i was going to get better, but starting to accept that i am not. thinking of filing for disability myself. i feel like such a loser.

and if i did work, it would mean driving, and this i don't do much cause half the time i feel funny. who this that rich, your dr. or the lawyer?

That's from my doctor

[RichGotsPots]

I need some concrete studies to convince him.

He just sent me this email too:

"Pls send me studies on how pots pts can have these symptoms even lying down

That's crucial to see before I can draft a letter

Legal standard is quite high for disability letter

It's one thing to say looks like pots let's treat it and see if pt. Feels better

But another entirely to convince insurance company you can't work indefinitely Because it's all pots

I consulted an expert colleague at NY hops and he said if someone has pots symptoms seated much less lying down it's the worst case he has ever seen

So pls help me while we both look deeper

You cant do any sort of work? Cannot work at computer 30-60 min at a time?

They will send 10 page form asking how much you can stand, sit, push, pull, reach, carry, etc in great detail"

[Dizzysillyak]

Rich,

I was diagnosed with disabling me/cfs/oi and my long list of co-existing diagnosises helped me.

These included failed rhomberg, white lesions on brain, nocturnal myoclonus, recurrent infections,

seizures, etc etc.

After thinking about this, I can see why your doc may think that "just" having tachycardia upon

standing may not be disabling. Hopefully others will know more ..

Tc .. D

[goodnuff77]

When I went thru this luckly I had multiple Dr's working towards it. But my lawyer said plain and simple can you work 8 hours a day 5 days a week without any extra breaks or treatment required. Also it goes off of what line of work you have done for the past 10 years not a new job. So this includes missing work day's needing extra breaks, being allowed to consume fluids throughout the day without leaving your work station. Also my Dr's took away my right to drive. So the same as you how would you get there. Any report of your symptoms and Dr's findings work in your favor. I would talk to a lawyer or even request copy's of your med history from Dr's to see what they include This will cost 10 to 15 dollars per Dr. But if your primary care moniters all of your other visit's they would have copies. Those reports should help you see what this Dr feels about your health because of his notes.

[ramakentesh]

Go with the studies on upright neurocognitive deficets.

[HopeSprings]

This is frustrating. Is he really suggesting that POTS patients only have symptoms when they are standing up? It's so much more than that. Can you go with the term dysautonomia instead?

[ramakentesh]

Alternatively email some researchers and ask them to reply in email to you and the other guy confirming whether or not in their experiecnce patients experience dizziness sitting as well as upright.

[McBlonde]

Wow.....that's crazy isn't it? Is he an idiot? (rhetorical question) . Instead of want you, the patient, to send in studies, why wouldn't he want to see you and examine you while sitting? If you throw up on his shoe like I did, that should get his attention. Seriously.... he is your doctor. HE has to know what is happening to you while you are sitting or otherwise, how is he going to treat you. Another thing.... if he knowingly doesn't check this out, and you have a car accident while sitting and driving, he's going to be in some liability trouble with the state. So sorry that you, too, are dealing with this.

[Darlene]

if he's a pots dr. then he would know u can get symptoms anytime

[RichGotsPots]

Go with the studies on upright neurocognitive deficets.

Rama, can you please message me some links to them? this is really important...

[RichGotsPots]

He says that if I get symptoms while sitting I'm the worst case of POTS him and another Dr friend have ever heard of. I know that's not true from reading everyone's experiences. Problem is he won't go off of experiences, he wants studies proving it...

[McBlonde]

Rich... You may already know this, but be sure and read about Activities of Daily Living.. http://en.wikipedia.org/wiki/Activities_of_daily_living

That's the perspective they look at things from...rather than "You have a disease.What are you symptoms" Study those and be able to articulate how you can't do X activity, because when you do Y happens.

[CharmedLinz]

The daily living stuff is really important and that part has to be submitted by you, since your Doctor can't see you at home.

Your Doctor isn't thinking about the before and after stuff pertaining to being at a job.

Have a friend or family member write a letter saying what they see what you are living with too.

I know it stinks big time, so sorry. It shouldn't be this way.

[lillybits]

drop in blood pressure when upright. it can happen in any upright or semi upright position. if the blood and o2 doesnt reach your brain it is lights out regaurdless plus it causes confusion brain fog, and slowes over all brain function

[janiedelite]

http://dinet.org/links.htm

Here's a couple of studies done that validate disability associated with POTS. Hope it helps.

[Brye]

I have a form my lawyer drafted for me to have my doctor fill out when I submitted my disability claim. I think it really helped my case. I was approved the 1st time around. It gave the doctor a chance to specify your limitations such as # of times you were likely to miss work/month. I would be happy to snail mail it to you if you want to PM me your address. You would have to come up with your own form, all my info is on it but it would give you an idea!

Brye

[Elegiamore]

Rich, this person can't be an POTS/autonomic dysfunction specialists or he wouldn't be asking you these questions. I hate to say this but you DO need plenty of testing, from big time places like Cleveland Clinic, Mayo, Vandy, etc. over more than a year's time. Your experience is SUBJECTIVE; scientific testing is OBJECTIVE.

I got disability first time, no turndown, no attorney. In the state with the longest wait (GA). So I will offer my thoughts.

First of all, make sure you meet the definition of being disabled as the Feds see it. I suggest you go to www.nolo.com and get a book on disability application process so you can be sure you in fact will get approved.

NO ATTORNEY can get you approved if you are NOT sick enough as WELL AS UNRELIABLE. I have a friend who went 75% blind, has never worked but as a truck driver (no other skills or education) and was TURNED DOWN TWICE. I am serious.

My adjudicator told me that the testing/records, constant hospitalizations and letters from big shots PLUS my INABILITY TO BE RELIABLE that got me disability. You have to prove at least one year of invalidism and frankly you probably need to prove MANY years of invalidism, being fired, etc.

The adjudicator warned me half way through that nobody had heard of my conditions (except for ME/CFS and heart failure) and the info was over their heads! I shipped them a complex chart I made up showing how the symptoms and conditions tied together and paperwork from this site on my type of POTS. Two weeks later I was approved.

Also I proved that I was at a doctor or in the hospital for approximately three full days each week (gave them my calendar) over three months and they actually checked them all out (unreal!).

PROVE YOU ARE UNRELIABLE. I could not longer drive so how would I get to work? My vision is often blurry, but I have no notice when it happens - how can I be reliable? I could pass out on a client - how would that look? I get vertigo without notice - what if I'm in public representing my company?

You also have to prove you won't get better. That requires a track record of concrete evidence from med record and such.

I supplied letters from life long friends, my dentist, physicians, my minister, etc. stating what I was like before I got sick and how I am a pathetic nothing now. I had a past boss write a letter about how he had to fire me even though I was one of his best workers, because I got sick in front of clients and was out too much. You get the idea.

These letters spelled out past specific achievements and displayed a life of an extremely active, type A personality that would NOT BE A FAKER/SLACKER. Prove who you USED to be and who you are reduced to NOW.

POTS is just one illness. The symptoms can be listed as illness also such as hypovolemia, gastroparesis, or whatever issues you have and you can show testing for these. I found that knowing my illnesses inside out (thank you dinet) allowed me to "guide" my doctors in their letter content and to know which tests I wanted to submit and which weren't relevant enough to use.

My primary care would NOT write a letter. I didn't let that bum me out. Only three "regular" specialists would write letters for me. But my two POTS doctors and two ME/CFS doctors wrote up doozies. They each charged $120 a piece for them. Plus a phone conference for the letter conversation ($400 each).

You have to spend money to make money (lol).

And of course, a positive attitude. Once you are convinced yourself that you meet the criteria, then you will project this to every doctor you consult with on this.

I hope this helped you and maybe somebody else. Good luck whatever happens. We care here.

[janiedelite]

That's a great idea, to have your friends/family write letters about how your illness affects your life as well as how productive you were prior to illness compared to now.

For me, I didn't need a letter from my doctors about disability. I had seen so many doctors, had proof of all of the appointments and needed therapy visits, even documented phone calls with doctors, testing from Mayo proving my illness, and had been sick for over 3 years by the time I was approved. Documentation is key, and the volume and quality of your documentation really counts.

I had a really good collaborative relationship with my primary care doctor, who knew me before I became disabled. This helped because her visit notes were always so kind, supportive, and the judge said that after reading my doctor's visit notes (from all docs - over a dozen), she could tell that my doctors all believed and respected me which went a long way toward making the judge believe me.

[RichGotsPots]

unfortunately I'm too ill to visit one of the major clinics, they are all over 10 hours away and I'm too ill to fly, drive or take a train. My POTS breathing problem is really life threatening and I have no medicine that helps of rescues it. I'm trying to make the best out of really scary situation. Unfortunately the NYU autonomic Lab doesn't take insurance and Dr Stewart only sees pediatric patients. My Doctor sees POTS patients just not as many as a clinic or researcher. Some how I'm his first one needing disability.

It's been over 1 year I've been out of work and I was let go from 3 jobs already because of my illness I really need this... I sent him one study so far and the diasability studies on the Dinet.org links page.. I'm going to try to ask my pulmonary doc to write a letter and my primary. I have all my doctor visits and testing in 1 folder..

I pray I get approved on the first try..

[ramakentesh]

The docs ive seen for POTS generally state that half their patients or at least a 1/4 are unable to work in any capacity.

There is a study from 2002 I think that was called 'dysautonomia' or something that actually says that 25% of patients are unable to work.

[issie]

My POTS breathing problem is really life threatening and I have no medicine that helps of rescues it.

Rich,

I feel so bad for you and you're not being able to find help. I hope that something will present itself and it will be clear what direction you need to take. Hang In There!

Issie