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Beccapooh
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I had already applied for SSDI when I was DX with Myasthenia, but now that that's in question and I've been DX (tenantively) with Dysautonomia, I tried to look back on the website (SSI), but don't find anything even remotely close to that type of a condition.

What have the others here, that have applied for SSDI used as a "qualifying condition"? Do we have to break down all of our symptoms into categories, like IBS, Migraines, what?? I'm at a loss totally!!!

Any info would help.............

Bec

PS - I've already done a search through the archives here, but I don't see that specific topic anywhere!!!

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Well here in Iowa when I appileid I listed everything. Like POTS, NCS, SVT, Ulcers, Depression, Pacemaker.......list goes on. Make sure if you list it the best thing you can do is have all the medical records to back in up. I spent so much time getting all my records, but it helps alot, ( as one of the reason I got deined was the doctor did have the right wording. So now this time my Lawyer is having that doctors write letters, along with the medical records that say why I can no longer work. SSDI wants to know why...... The bad thing I did was get a lawyer, as the first time I did my best, but there where things I missed. Many lawyer will not take the case thought untill you have been deined at leaset once. And then then bad thing is my lawyer get $5000.00 or 25% ( 25% will not go over $5000.00).

I wish you the best luck, with your SSDI!

Amy

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So, we don't HAVE to have one of the conditions listed then? I'm confused.

Bec

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I feel under the heart section due to all my rthyem problems, and have the ekg's to back it up. But the social worked I had listed everything I had. So when my deinal came it talked about each one, and how it effect you. Beleive me if you have a problem list it as the more medical prooblems you have the better you are. Just make sure you have the medical records to back it up!

Hopfully that help some. I know others have been doing this, and work on SSDI more then me, I hope so over them will also post for you. One thing that helped me to get though alot of it I contact one of the Iowa senters that sent me alot of information to help me. Just an idea!

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I've been denied twice and have been waiting for a hearing since October. I do have a lawyer.

My diagnosis is

POTS

Innappropriate sinus tachycardia

Mild cardiovagal failure

Autonomic neuropathy

Depression

Anxiety

I'm crossing my fingers. I guess to have a depression diagnosis helps.

Dawn

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I think it's 4.1 Tachycardia...Look under the SSDI/SSI BLue book (I think that is what it is called)...If that is one of the symptoms you have obv. :unsure:

Jacquie

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Bec I do not believe that "dysautonomia" is recognized just that as a dx for ssdi,ssi..(i might be wrong.. but I'm allmost certain that they do not)

But instead I know that when I wne thtur my appeal with ssi.. that they broke down the symptoms that i have DUE to dysautonomia.. (ie.. fainting-syncope-- near syncope,

tachycardia..-arrythmia's.( i was able to show them strips of my Hr at 185-200bpm.. as well as all cardiac works up.. and statements from my docs even the ones who thought i was a looney.. but yet couldnt not denie the fact that I had a very fast heart rate.. shortness of breath, GI troubles, migraines, and the list goes on and on..

when you list your dx's list your sysmptoms too.. have somebody msybe help you break it down so that you can explain how the SYMPTOMS of pots/dysautonomia affect you in daily living..

But no i cant say that the acutally diagnosis of dysautonomia was used.... but the symptoms where.. does that make sense?

the only thing i actually remember being on the criteria list for ssdi (for me was) depression.. anxiety.. and lung disease..

good lcuk to you in your ssdi fight dear.. other on here may have more infor for you

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So............has ANYONE actually gotten SSDI with POTS (on this site, of course!).

I have the following as my "medically documented" symptoms:

1 - Migraines

2 - Syncope and near syncope

3 - MVP

4 - Some Tachy some brady (basically and irritable heart beat)

5 - TIA like activity (unexplained)

6 - Seizures (again, not clearly explained)

7 - Panic attacks (??? :unsure: )

8 - Anxiety

9 - Blurred vision

10 - Muscle weakness

11 - Severe diarrhea (IBS)

12 - Random vomitting

13 - Daily fevers

14 - Depression

15 - Light and sound (high) sensitivity

How in the world do I put these symptoms onto a list for SSI?? ARGH!!!! I'm so frustrated. I haven't been able to work for nearly two years now and we're about to go under financially. I can't find a job that will give me the flexibility to only work "when I feel up to it"?!!?? What do they (SSI) expcect us to do, huh???

:(:angry::angry:

Rebecca

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On some short review form the code for my dx from 1990 shows up. Many have the same thing on theirs. back then I got on Soc Sec with Chronic adult mono aka CFS.

The number dx is 9330 or 9339 (I forget which, one was a typo) back then it meant AFFECTIVE disorder as that is what umbrella term CFS came under. Since it was such a generalized, invisible illness, fell into same category as depression. There is also another number but I forget what it meant.

Anyway, they only need a code of your symptoms that LIMIT YOU to fit you into DISABILITY. POTS is not on the list BUT OTHER THINGS ARE. A cluster of symptoms adds up to disability.

If I got it in 1990 with just paperwork from my doc, a shrink's congitive impairment testing and TONS of photo clips from books I was reading, and my personal daily diary, it can and IS done today for ANS problems. :unsure:

I do not know what "list" you all are looking at but it's NOT THE NAME OF THE DISEASE that gets you disability, it's the PHYSICAL LIMITATIONS that INTERFERE with DAILY basic functioning (ability to cook, sit up or stand for long periods of time, shower, run errands and shop as needed)

Any good doc savvy with disability experience can get this for you as can a therapist. A good attorney can help but "good attorney" being the key word. Best of luck to ALL OF YOU and it can be done. Just know how to write the details. Give them MORE than they ask for but ONLY IF MORE proves your limits.

It's all in "the wording."

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Rachel qualified for SSI last week - we started the process in March. I did the on line adult disability form for her. After skimming thru 400 pages for SSI regulations, I concentrated on the issues with functional status and ability to maintain "gainful" employment. I got all her medical records myself and put them into folders with sticky notes describing their purpose. Example, one folder was early dr visits when no one knew what was going on - just to document length of illness: another was tilt table tests etc with those docs and meds, another all her IEPS from 8th grade on - again showing she was on homebound services for a disability. I focused on how her illness kept from being able perform their definition of "gainful employment".

I am amazed it worked - 1st time approvals are rare in Ohio. I am sure that we had over 4years of documentation that the public schools considered her disabled enough to be homebound help ( of course that was battle at that time too). She even got "presumptive approval" A small percentage of cases get fast preliminary approval with payments up to 6 months until the final approval is given. Rachel got her first payments into her bank account before she received written notice. We were checking something online and there was alot of money in the checking account!!!!

Focus moreon the functional limitations and inability to perform gainful employment than on the diagnosis. She did not need an exam and she only went in once in May for the formal application.

Louise

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Yes...a lot of folks with dysautonomia are approved for disability..if you do a search you'll see that although it can be difficult it most definately can be done...some even on the first try.

I know that Roselover..(I think it was her)..posted about this awhile ago and she listed the actual codes for heart arrythmias that can be used when applying...like the others have said since "dysautonomia" is not an approved disorder you have to use your symptoms. I was very fortunate to have an excellent case worker handeling my claim and was one of the lucky few to get approval my first go around.

Good luck with everything. :unsure:

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yeah sophia that is waht i was trying to put type out in laymens terms.." how the disability or symptoms affect daily living" But it didnt come out that way! :unsure:

and by lists I meant symptoms of dysautonomia that are on the criteria and such for disabilty.

and yes you can get disabilty.. based on dysautonomia.. but it can be a lengthy process..

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When I was approved, the SSDI doctor at the hearing stated I had three qualifiable diagnoses which are all related (we know this). I know one code pertained to the arrythmia, I think one was the NCS, and the other I think was hypotension. So as far as codes, there isn't a code for dysautonomia but you CAN get approved for disability with dysautonomia but for coding purposes they break it up according to symptoms.

Carmen

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check out this link....

http://www.socialsecurity.gov/disability/p...cular-Adult.htm

check out this link....

http://www.socialsecurity.gov/disability/p...cular-Adult.htm

You want to list POTS but I would have your Dr list IST or syncope as primary. You will also need to show that you have attempted the medications to control heart rate and blood pressure and that they failed.

Then, and maybe most importantly, you have to show HOW your illness prevents you from doing activities of work (including a desk job) otherwise, they will most likely deny you. You and your Dr both need to let soc sec know how this effects your ability to sit, stand, crouch, bend, lift etc etc.

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