Just heard from the "Disability People"

[danelle]

Hang in there Paige, and please keep us updated/ How long has it been since you originally applied? If you don't mind me asking, what state do you live in?

[purplefocus]

Danelle,

I applied in March 2004. I live in Alabama.

Paige

[DawnA]

Thanks futurehope for postig the article. I am not able to get to the computer much

these days.

Paige, I can not believe what you are going through. I thought I would have to claim disability on a mental health issue, but I did not. After becoming sick mental health issues started to come forward, like you said, who sould'nt be depressed. But I had problems that were not related to the POTS! After becoming sick I felt so child-like that my traumatic childhood and memories started to affect me. This was all documented in my paper work. I feel fortunate that they did not take this approach. I was giving SSDI based on a mylenopathy that caused significant coordination problems. They sent me to see one of their neurologists and he was great. Now they are finding it is not a mylenopathy but a neuromuscular problem.

It is so outrageous that they always want jump the gun on the psychological issues. Once it is in your charts many proffesional seem to perseverate on it. I went to see a female gynocologist for an ovarian cyst. She brought up my depression/anxiety (which is no longer an issue). I felt like she was talking to me as if I was an inferior being. She was so condescending. Is this depression junk going to follow us forever?

I wish you the best of luck! Like Nina said do not give up. And send them some good articles.

Dawn

[opus88]

Hey, Paige! Alabama? Me too! Love the warmer weather - moved from the midwest almost 9 years ago, will never go back!

[purplefocus]

"Current Update" I went and seen the psych doctor for disability today. She told me that is all she does, is stuff for SSDI. It really didn't take too long. She asked me several questions (about my childhood, my previous job, if I had ever been fired, what 2 + 2 =) stuff like that. She told me that she was given me a diagnosis of depression but I wasn't depressed enough to get disability just off of that. She told me that the board would have to look at everything. She said she would get her results faxed in to them in the next 2 to 3 days. So here I go hurrying up and waiting. It really ticks me off that the depression would even be a factor, isn't it enough that I can't go 3 days straight without passing out, or my fatigue is so bad at times that I have to get someone to take care of my 3 year old. I can't drive any longer, my heart rate goes insane just when I walk from the front of my house to the back, etc, etc, etc. Who wouldn't be at least a little bit depressed. At least I am not out hurting all the medical jerks............Sorry guys, just needed to vent a little.

Paige

[blackwolf]

Don't give up!!! It took us, my husband and I almost 2 1/2 years to get approved. We've lost our home, one car, livestock, (horses and cattle), our friends. We had to move to a bigger town where it was easier to get help.I lost my drivers liscense and my job, I was a CNA in a nursing home in a close by town, They were going to help pay to go to school for my RN. And please, DON'T BE AFRAID TO ASK FOR HELP! We recieved assistance with food, heatting fuel, electricity, water and sewage. Check if your city, or state, has a help line. Call your state Senator. What ever you have to do.

Don't stop fighting. When we finally one my case we were living on a monthly alotment of $375.00 from the state.

After my trial, I was told by the court recorder that in the "little black book" of diseases they use to determine disabality doesn't even list dysautonomias like OH, POTS of any kind. Never give up!!

We, as a family, now recieve nearly $2,000.00 a month form SSDI. My husband is my caretaker, and he also suffers from severe social anxiety, depression and a form of post trammatic stress syn. from a terriblly abusive father. I have two kids, a son, Andrew now 10, and a daughter, Lorrie, just 7.

Blackwolf

[Michelle Sawicki]

We ran an article by Dr. Grubb in our last newsletter that explains how some of the medication can help:

http://www.dinet.org/Spring2004/aprnews1.htm

Nina re: pdf articles....I do have some but due to copyright laws I cannot redistribute them unless I have permission from the author and/or publisher (whoever holds the publication rights).

Michelle

[WifeofPotsMan]

Hello everyone. I can tell you that the road for obtaining disability is a long and arduous one. One in which I swear I was going to loose my mind. I wont go into to all the long details, but my husband has POTS and you are right, there is no definition or details in the "BLUE BOOK" that they use. I had to explain on more than one occasion to the social worker(s) what POTS was and how it affected my husband.

I can tell you that my husband applied for disability in February of 2003. We finally got an ok to be able to receive in May of 2004. My husband hadn?t worked for 3 years due to his health condition. Unfortunately though the disability office will not even consider you disabled until you have a diagnosis. One other little tidbit you should know is that they will decide on a date that they consider you to be ?disabled?, once they set that date you have to wait an additional 5 months before you start to receive back pay for your disability. That was a shock.

We were of course denied the first time. We appealed but they said that they never rec'd the paperwork. I had to call the disability office & the woman that I spoke to said that they would put the appeal through, but if I was denied on this appeal that I would have to go before the judge. In essence it used up one of the appeals that you have prior to going before the judge. I did all of the work myself. I made copies of everything that I sent back to the disability office. I kept copies of every answer that my husband put on every questionnaire. Sometimes the questions were so similar I could go back to an earlier questionnaire and copy what my husband had said for that answer. They are looking for you to change your story and I wasn?t going to give them the satisfaction. I had great doctors that were very supportive and said point blank that this was a disabling condition in which my husband didn't have much of a quality of life let alone the ability to work. I can tell you that I was very proactive.

My husband was on Paxil early on to see if that would help with the uncontrolled tremors that he has. He wasn't depressed. He should have been. He was in and out of the hospital in 2003 no less than 7 times during the year. They didn't know what was wrong with him until July of 2003 when we finally found a doctor that recognized what all of the test results meant. From that moment on I was very proactive about receiving the disability. I was told that his condition, due to the severity would most likely get worse. He has some additional problems besides the POTS that make things even worse.

I would call and write letters to my husband?s social worker. There was one section in the questionnaire that my husband received that said to provide any additional comments regarding how your impairment or pain limits your ability to work. I took that opportunity to type up a summary on my husband?s behalf. I explained what POTS was and the various symptoms and problems that he has to deal with on a daily basis. I utilized the information on the website that listed all of the possible symptoms and printed it out for them.

Dinet Dysautonomia Symptoms

I sent them lots of information on POTS because I knew that there was nothing in that "BLUE BOOK" that dealt with this type of impairment. Since my husband was seeing multiple doctors I would get their doctor notes every time he would see one and fax or mail them up to the disability office that we were dealing with. I inundated them with information about my husband and his condition. Of course I reviewed all of the doctors notes prior to mailing so that I only sent them the information that supported my husbands need for disability. Of course since my husbands condition at the time was so unstable and severe he was seeing at least one doctor each month. So it was pretty easy for me to inundate their office with information. I didn't want them to be able to forget my husband. I wanted them to think about him when they dreamed at night. They can walk away from their jobs at the end of the day, but my husband isn't able to walk away from his problems after 5:00 p.m.

I found in the "BLUE BOOK" that the disability office uses for deciding on a disability. I found what categories my husband qualified under & I wrote a letter to them telling them what he qualified under. I did in a sense their job for them. I told them where to look & what he was qualified under. The link where you can look at the BLUE BOOK for yourself is

Social Security Disability Blue Book

It?s rather lengthy and is aprox. 200 pages if you print it out. I did. It made it much easier to read and research. My husband fell under section 3.02 & 4.05 in terms of what condition made him eligible for disability.

I can only encourage you to continue. I do believe that part of the reason for all of the red tape is to discourage people. I don?t know how people without real disabilities are scamming our government by claiming a disability that they don?t have. I found it almost impossible to prove that my husband who does have a real disability was indeed disabled. I think that the sad thing is that people who truly need and deserve this are sometimes discouraged and just give up fighting for what?s rightfully theirs.

As to Sue who said that her caseworker said that your husband made enough money, my understanding is that it?s not about your household income, it?s whether or not you have enough credits paid in to receive disability. The decision isn?t based on your household income. I had asked this initially when we started this process. Don?t give up. When you appeal the decision, you?ll get a different caseworker. Someone who hasn?t worked on your case before and can bring an objective viewpoint. Good luck.

I hope that some of the information that I?ve given will help, even if it?s just one person. Don?t give up. Educate yourself and your caseworker. I mean mainstream doctors don?t always know about this condition or how to treat it. Do you really think that the government workers know about this condition? I can assure you that you have to be your own best advocate. That's one of the reasons that I kept copies of everything. Shortly after we received the letter letting us know that we had been granted disability, they lost my husbands file. This file was at least 2" thick and they can't locate where it is. Thank God I didn't just wait for his payments to show up. It took me an additional month calling before the payments started because no one had his file & knew to start the payments. The only thing I had was the letter I was sent. I don't want to say "trust noone" that sounds so X-Files, but you do have to look out for yourself. Good luck. If I can help any of you, please let me know.

[futurehope]

Wifeofpotsman, I would love to know what state you live in and the name of the doctor that wrote up a functional capacity questionnaire detailing how and why your husband was unable to work.

Thanks. That's my biggest roadblock, getting a physician to fill in the FC form.

P.S. I looked up those impairments and they involve respiratory and heart arrythmias. I do not have either of those. What arrythmias and respiratory problems does your husband have, may I ask?

P.P.S. My physician asks me every visit "How long can I sit?" Well, that question doesn't really mean anything to me or say anything about my condition. The reason is, I am ABLE to sit. If you look at me, my hips are flexed, my feet are on the floor and I'm sitting. It would be more valid if he asked me, "How long can you sit before you become incapable of thinking or doing any tasks because you feel so bad that you can't think?" I think I'll tell my doctor next time I see him what I just told you.

[WifeofPotsMan]

Futurehope,

We live in Florida. As to what doctor filled out a form regarding the functional capacity I don?t really know. We had at the time around 10 doctors. Here?s a short list of the kinds of docs we had: cardiologist, EP cardiologist, pulmonary doc, neurotologist, rhueumatologist & an orthopedic doc. I?m not sure if you?re dealing with a primary physician or a cardiologist or what kind of doctor. With POTS you should have tachycardia. I mean that?s in the name itself, P ostural O rthostatic T achycardia S yndrome. So you should have tachycardia. There?s a wonderful article that I had come across in all of my research that I think someone might have even posted on this site from the Mayo Clinic. I?ve listed the web page below and the article that you are looking for is half way down the page called ?Quality of Life in Patients With Postural Tachycardia Syndrome?. You might want to consider taking that to your physician. It has a lot of ?doctor words? but it is very informative & I sent it to my caseworker with highlighted sections.

Mayo Clinic Proceedings

I get the feeling that your doctor isn?t really familiar with POTS due to what he keeps asking you. I think that I would consider finding a different doctor. Is this the doctor that diagnosed you with POTS? If he feels that is your diagnosis, why is he giving you a hard time?

As to the arrhythmia question ? section 4.05 is not really descriptive of POTS. Remember, there isn?t really any section in that ?guide line? that they use to determine disability that applies directly to a POTS patient. The best that can be done is to find some section that applies to you. With regard to the arrhythmia ?the real key to that is the syncope issue (fainting or near fainting). Your doc did do a Tilt Table Test ? right? That should then be part of the ?proof? you need in order to substantiate your case.

[futurehope]

My neurologist is the one that is familiar with POTS and with my case and he diagnosed me. I do not have fainting. I just "feel bad" when vertical. I can still sit, my feet are on the floor, my hips are flexed, I look like I'm sitting. I just feel bad. The feeling gets worse the longer I sit and then it becomes difficult to think because the headache is so bad. My heartrate goes up to about 116 or so, not as high as some people on this forum.

Yes, I have the article on quality of life. I gave it to my lawyer. My doctor does not like doing any paperwork - and I guess he wants no part of it. His excuse? "I see you here for 20 - 30 minutes. I have no proof that you can't be at a desk for 6 hours a day doing a job, do I? Your employer would be in a better position than I am to tell them of your inability to work." He is the only doctor in Maryland that really understands.

Thanks for your reply. After looking through the codes, I realize I have no hope whatsoever. I do not have the money to get neuropsych testing to prove that I'm too sick to work when vertical. That costs in the thousands, and I'm pinching pennies as it is.

[blackwolf]

When I was appling for my disability, there was a group of people that worked with Vocational Rehab. that did my evaluation as to what I could and couldn't do. I was refered to them when I was having a lot of trouble fainting and could no longer work as a CNA. During my evaluation, I was tested by an occupational therapist, a psychologist and had an evaluation by someone trained in "nuerlogical dysfunction". Mabey you should check to see if there is a group like this in your Voc. Rehab. group. They even sent someone with me for my trial, she was my case-worker for this group. I'm having major "fog" and can't remember the name of the group.

DON'T GIVE UP!!!

Blackwolf

[WifeofPotsMan]

Futurehope,

Please don?t get discouraged. I?m just wondering ? please don?t take this as a nosey question, but how did your neurologist come to the diagnosis of POTS. My husband went through a multitiude of tests before the diagnosis of POTS. When my husband saw his neurologist, he wasn?t sure what the heck the problem was. My husband has really bad tremors like many of the people here experience. That was what intrigued our neurologist more so than the rest of the collection of his symptoms and problems. I just wonder if from what you are describing if there couldn?t be another issue that he hasn?t uncovered. I don?t know about Maryland?s physician network, but perhaps doing some ?investigative? work on the Internet would help you discover an additional doctor that might be able to help. I?ll tell you, when I first started trying to find out what was wrong with my husband; I would call doctors and talk to them on the phone before making an appointment. Some would allow me to send them his medical records. Now I can?t be 100% sure that they ever really looked at them, but they did send me correspondence back via letters that this seemed out of their ?expertise?. It saved me from spending money to see doctors that couldn't help us. My husband received his diagnosis at the Cleveland Clinic here in south Florida. The have a web site that I?ve listed below. It wouldn?t hurt to e-mail or call to see if they had a physician who might talk with you or take a look at your medical records.

http://www.clevelandclinic.org/florida/

Just don?t give up. Like blackwolf said, there are people out there that can help you. Sometimes it just takes a little ?digging? to find them. I know what it?s like to pinch those pennies. If it hadn?t been for our families, we would have been in real trouble. They brought us groceries and made sure they helped where they could. Health is the one thing that if you don?t have it, there?s not much else that you really want in life except to be healthy. It does put things in perspective. The down side is that the rest of the comforts that we?ve grown accustomed to in life are sometimes jeopardized when you are battling health problems. If there is anything that I can do please let me know.

[futurehope]

Wife, I was diagnosed by a TTT at my neurologist's office and by a TTT at the National Institutes of Health in Bethesda, MD (in one of their studies). The doctor there is a neuro-cardiologist. I have not been through their FULL workup, though. I'm with you (I mean I agree with you). My symptoms, even though they are incapacitating for me are no where near as bad as other people's symptoms. I, myself, am on a one-woman journey to find something ELSE that is causing the POTS symptoms. I just had MUCH bloodwork drawn to be tested for autoimmune disorders, including a test done at Mayo Clinic that tests for ganglionic acetylcholine receptor antibodes (autoimmune against your own nerves, I think). My current endocrinologist is very interested in working with POTS patients and has had success with giving supplemental cortisol to two POTS patients. I, too, am now taking supplemental cortisol and he has just increased my synthroid (thyroid hormone). I have ALWAYS thought that in my particular case there is an endocrine connection. The jury is still out on the above, since I'm still adjusting to the hydrocortisone and to the increased synthroid. Anyway, I'm NOT giving up on finding a doctor who can help, since my gut instinct is that there IS something they can do to help. The right doctor needs to find it. Anyway, I'm pleased with my doctors right now. They're responding the way I want them to. I don't want them to give up looking for a cause (the endo just found out via a Insulin Tolerance Test that I respond from my adrenals in a SUBnormal fashion when under stress - that's why I was given the hydrocortisone) . And I don't want to stop at anything to find a way to help me. So, they may not be helping with the disability (and I'm broke), but they are helping with the POTS. I'm grateful for that.

I really appreciate your response. Thanks a lot.

[hilfgirl33]

Wife of Pots, I tried the link for the Mayo Article and it did not work. I am having a disability hearing on Sept 30. Was wondering if you could give me the site if you still have it. THanks a lot!

[futurehope]

The link is:

http://www.mayo.edu/proceedings/2002/jun/7706a4.pdf

[WifeofPotsMan]

Futurehope,

Keep trying and don't give up on the disability. If you have all the documentation, despite the fact that your doc isn't being helpful by filling out the paper work - your test results should speak for themselves. The fact that you have so many doctors that are trying to help you is another good thing. If your neurologist wont help how about one of your other docs? Good luck. Let us know how it all works out.

Hilfgirl33 - sorry I didn't respond. Didn't get the notice to my e-mail like ususual. Good luck at your hearing. I hope that the article helps. I've been told by another who went to her hearing that the judge is a much more reasonable person than the social workers. So good luck! Let us know if it works out for you.

[purplefocus]

Here is the latest update if you are interested. I talked to a claims person yesterday in the local office. I asked her what was going on with my claim and why hadn't I heard an answer yet. It has been since the first of March. She told me my claim was chosen to be reviewed in Atlanta. She said if I haven't heard anything by Oct. 4 to call her and she would call Atlanta and see what she could find out. Have any of ya went thru this second round before you even found out the first answer. It is insane. I have called some places to go for interviews (I am a nurse) because things are just too tight. I know I won't be able to hold up long, probably not even an 8 hour shift. What do you do? I haven't worked since Feb. and don't know how I can now but I have to do something.

Paige

[blackwolf]

Dear Paige,

Please don't give in. I know how trying this all is. Not to scare you or anyone, but we lost our home, one car and all our livestock before we had even gotten my first responce, much less my second. Personally, I wouldn't wait for Oct. anything to call. They owe you an answer!!! there is such a thing as "reasonable amount of time" for an answer.

As to working, is it really worth the stress? Can you find a "easier postition" (ie. doctors office) any place where you can take the breaks you need? Mabey fill in at a nursing home, part time, do things like scheduling, patient registration, ect.? Just an idea.

Hang in there and don't give up!

Blackwolf

[Jersey Girl]

I initially started my application in November of 2002 for SSDI but just recently received my second rejection. This one came from New York State--I think that most appeals are read at another state's office. I just handed the next appeal to an attorney who will charge 25% of past payments not to exceed $5400. If we don't win he gets nothing. I gave him the article on the Quality of life of patients with POTS from Mayo clinic as well. When I saw him I was feeling better than usual so I don't know if he believed I had a disability but he was willing to learn about POTS. The forms are so time consuming and I was happy to let someone else handle it at this point. Futurehope, what do you think was the deciding factor that awarded you disability payments? I was told that becasue we live so close to Pennsylvania that the judge will be there.

[morgan617]

paige, don't give up. if you work and exceed their limits you get rejected for sure. we lost everything too. i know this is not fun, but i was told the state had to respond within 120 days. i would call and ask about your right to hear something within that time frame. i found out on the 120th day. exactly. so depending on when you filed, they should only have that long. morgan

[purplefocus]

Morgan,

Where did you get the information that the state had 120 days to give you an answer. Of course no one at the claims office has told me this. I filed the first part of March 2004 so it has been well over 120 days.

Paige

[WifeofPotsMan]

This might be great news for you! My husbands case was reviewed in Atlanta just before we received the final ok for him receiving disability.

It's a quality review thing - like an audit. To make sure that the disability office dotted their I's and crossed their T's. So this might be really good news for you! If the Atlanta office finds that everything was ok, you should hear soon. If the office finds that there were some things that your case worker missed, then it's back to try again. Hope for the best! I hope you hear really good news soon!!

[morgan617]

paige, they told me when i called them for about the third time. i also actually got a letter stating they had to give me a decision in 120 days. so it was even in writing. i had a local person assigned to me and she said that was correct. morgan