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!!

Sorry...I listed the webpage wrong...here's the correct page on the May disability conversation: Just heard from the "Disability People" Thought I'd correct that in case you want to look.

Danelle, This is really recent for me. My husband was just recently approved after applying in Feb. of last year. My first comment is that I wouldn't listen to that lawyer. You are your own best advocate. If you have a diagnosis, I would think that your chances are much better than my husbands were when he applied. He was only 37 & at the time had NO diagnosis. We just knew that he wasn't going to be able to go back to work. You might want to look at the post about disability that was on this site earlier in May. Just heard from the disability people There were a lot of people that wrote in with good information. In a nutshell - flood your SS office with information on you. Talk with your caseworker on a regular basis. My husband?s caseworker knew nothing about POTS (once we got a diagnosis) and I took the time to explain and answer some of her questions. If you have someone that can do that on your behalf I certainly recommend it. My husband, because of his condition at the time was not able to talk with them (SS caseworkers) not only because he wasn't well, but just the stress of the conversation. Make sure that you paint a person to them instead of being just a number. The very thing that they originally denied my husband on, was the very thing that they ended up granting the disability for - crazy huh? As to the finance problem, I can certainly relate. My husband made a significant larger amount than I did, so without his income...well you can just guess. We were fortunate in the fact that family brought over groceries, made meals and did what they could. For the rest I used our credit cards. I'm in debt up to my eyeballs, but we did end up receiving the disability & I'm working on a "get out of debt plan". It was there and did help though until we received the disability. Don't give up. If I can be of ANY help, please just let me know. I didn't want to write a book, but I will tell you that I did get the disability through on my own. No lawyer and with 2 rejections. It can be done. Let me know if I can help!

Morgan, I'm sooo sorry to hear about your rejection letter. Don't give up. I know that you can't give up! My husband went for years without diagnosis or help. We are just now finally with doctors that are trying to help us. So, please don't allow this to keep you from going forward! No one deserves to take your hope away ever!! I am currently filling out the forms to see if Vanderbilt will see my husband. I'm curious about two things. One, do you have a diagnosis of dysautonomia - POTS or the like? Second, did your doctor send any kind of letter along recommending that you be seen? At least this lets me know what I might be in for.

JLB- Just read your post. My husband has POTS and he too has problems eating. Last year he was in & out of the hospital no less than half a dozen times. He lost about 15 lbs. due to not being able to eat. Not good when you are 6'3'' and weighed a mere 145 lbs. before he lost weight. So, loosing more weight wasn't a really good idea. Get yourself some Boost or Ensure. That's what helped to get him through. Lots of nutrition. Let me caution you though that this isn't a meal replacement. It's a supplement. The nutritionist working with us was very firm about that. But it was very helpful when he just couldn't get anything down. Try small meals throughout the day. Don't sit to eat a regular meal. My husband would "snack" sometimes all day just to get something in his stomach. You might want to consider less meat in your diet. We are mostly veggies, but we do eat poultry & fish. He would have just maybe an ounce, not even sometimes. He started supplementing with nuts because he could snack on them throughout the day. His chief "complaint" if you will, was that the palpitations were so bad after he ate - along with the lightheadedness etc. He also took a multi vitamin twice a day instead of once when he wasn't able to eat. I think it's a great idea that your husband comes with you to your appointment. My husband was so weak that if I didn't go, he wouldn't remember some of the conversation he would have with the doctor. I think that having someone as your health advocate is a good idea no matter your health condition, but it's especially important when you are having health problems. One other little side note, I know what you're going through at the hospitals and having the doctors dismiss you. I can?t tell you how many times before my husband was diagnosed that the doctors told us it was anxiety. You do need to see a cardiologist. Even though the neurologist might be able to get the ball rolling, he will probably tell you to see a cardiologist. Ours did. My husband has finally ended up with an EP cardiologist that has been so helpful. However, that was after he was diagnosed with POTS. Before that the EP cardiologist(s) we saw - I wouldn't recommend them to treat a sick puppy. In doing the tests, my husband also has PVC, PAC, atrial flutter, tachycardia and a long list of other problems. Ask about getting a 24 hr. monitor. That should be very telling to the cardiologist. Good luck! Let us know how it goes.

Ethansmom: My husband is the one that has POTS and we live in Central Florida. Finding good doctors with knowledge of POTS has been difficult for us as well. My husband was finally diagnosed last year by a physician at the Cleveland Clinic. They have 2 locations here in Florida. One in Naples, which is south of your location and the other near Miami. That's the one that I took my husband to. We were finally diagnosed by one of their doctors, but long term care from their facility wasn't a real option for us. My husband has a lot of cardiac involvement like many of POTS patients do and I needed to find someone closer than 4 1/2 hours away. However, not knowing the kind of care you require check out their web site: Cleveland Clinic Florida We have a doctor here locally who is seeing my husband. He's not a specialist in the field of POTS, but there are few who are. He is willing to learn and try to help & is encouraging us to seek specialized care for the purpose of gaining a greater understanding. We are now investigating Vanderbilt Univerity Autonomic Dysfunction Center in Tenn. Hope this helps some. Welcome to Florida.

I'm curious - have any of you gone to the Vanderbilt University in Tenn.? I have been looking for a place "close" to us that has more experience with POTS than where we live locally. Our current cardiologist is really encouraging us to find a place with more experience than he has. He's willing to learn, but I think that the amount of cardiac involvement makes him somewhat nervous. My husband doesn't enjoy the sypmtoms either. I discovered that Vanderbilt has an Autonomic Dysfunction Center & I'm wondering if any of you out there have gone & what's involved. Thanks for any info you can send my way!

Carol, In looking for doctors to help my husband we probably saw - no lie, a dozen cardiologists. It wasn't until we went to the Cleveland Clinic that we could be properly diagnosed. My husband had a TTT by a previous cardiologist that had determined the test was inconclusive. I don't know what your financial situation is & I'm not asking. I know that you can't put a price on your health, but your wallet will certainly try. I won't begin to tell you what to do. You must follow your own instincts. I will tell you what I've learned. You can't take information in on your doc visit and expect him to truly evaluate the contents. I find that sometimes their arrogance alone won?t allow them to do that. If I have something I want them to think about and consider, I send it via fax or mail a week before my visit with a cover letter. Take what you can from the doctor you are seeing. If you don't feel like he has guided you well, see another physician. We are seeing a cardiologist that doesn't "specialize" in POTS, but he's willing to learn and is actively seeking answers. Does that take the place of a specialist ? no. But sometimes a doctor that is willing to learn and try to help is just as supportive as the specialist. Listen to your gut. After my husbands "inconclusive" TTT, the cardiologist that we are seeing now repeated the test in his OFFICE. Yes, he has a TTT in his office so we didn't have to pay any additional co-pay or deductible. Just our normal co-pay. That may be an option for you. Finally, you know your body better than any doctor. If your gut tells you the guy doesn't have it right, he probably doesn't. I have learned that on this "health journey" that I've been on with my husband, we learn what we can from each doctor. We take things not too seriously when we can and most of all I trust his gut & I'm his advocate. That's one of the most important things I can tell you. It's always helpful if you can have someone else accompany you to your doc visits. Again, your health is the one thing that money can't buy.

Lorrell, I was reading your post with much excitement. I was curious though, what prompted your doctor to prescribe this med to you? I didn't know what symptoms you were having that would prompt him to say - hey lets try this. If that's too personal you can tell me to MYOB. I'm good with that. But my husband is extremely sensitive to meds, so when I read that it was a vitamin I'm encouraged that he might not have a reaction. Your results are really encouraging. I'm sure for you as well. Just to be able to lift some of his "brain fog" would be a relief let alone help with the fast heart rate. Please let me know. Thanks in advance.

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.

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, 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.

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.

Everyone - I haven't written in a while. Busy working on my husbands claim for disability. We applied after he returned from the hospital in February 2003. We were of course denied on our first try. We appealed. On the second go around which started in July 2003 we have just received a notice that we have been approved. 1:D It?s now the beginning of April 2004. I haven't seen the first check yet, & the notice said that we would receive a second notice of just how much he will be receiving on a monthly basis. Our "official" notice of acceptance came March 12, 2003. So, as you can see.... I?m still waiting. I wanted to let everyone know that I did this without the help of a lawyer. I'm not in the law profession so everything I did I had to learn myself. For some I know that the lawyer is definitely the way to go due to the enormous amount of paperwork. How many times can they ask the same question 30 different ways? It seems really redundant. I can tell you a little of what I did. I had GREAT doctors that even though they aren't "specialist" in the POTS world, they knew enough to know that the recommended treatments were not working for my husband. I would get the notes from every doctor that my husband saw. At one time my husband had 9 different doctors. I followed up and got the results of every test - every note - everything I could get from his doctors. I would then read everything to see what the doctor(s) were saying in their notes that they might not be telling my husband & I. Let me just say that reading the notes is very enlightening. You don't really seem to get the doctors "full" opinion until you read his notes. Then I would compile a "package" to send to my husband?s caseworker at the social security disability office. I would write a letter with each package. There is also a website that has the information that the social security uses to see if a person meets their "qualifications" for receiving disability. http://www.socialsecurity.gov/disability/p...onals/bluebook/ This is an enormous amount of information. I found the issues that applied to my husband & was very bold in my letters to my disability case worker & in my letter sited the categories that my husband fell under & that was why he deserved disability. I did her job in a sense for her. I didn't want any misunderstanding of my husband?s health situation. My husband had been symptomatic for 4 years. He had not worked in the last 4 years, but we didn?t have a diagnosis until July of 2003. I can?t tell you how many doctors we?ve seen over the last 4 years. It has been a frustrating journey. Moving on though I wanted to give a little ray of light if possible to let everyone know that this can happen for you. It took my husband a long time to accept that he was never going to be able to return to work. It?s even more frustrating when you are put through the disability process. We only were approved ?back pay? from July of 2003. I wasn?t really happy with that decision since we have doctor documentation over the last 4 years. This might be where a lawyer would have been helpful. But we?re not greedy & we?re just happy that we are going to be getting some help now. It won?t fix our lives or my husbands health, but it will help. If I can help answer any questions, let me know. Like I said I?m by no way an expert. I just couldn?t see why I would have to have a lawyer prove what my doctors were saying. Why should I have to give someone 25% of what my husband is rightfully entitled to? I think it?s a somewhat screwy situation. To all of you considering it and for those now going through the process ? good luck!

After reading all of your posts, I thought I'd better sound off about my husband?s experiences. He has chest pain that feels like a heart attack. He has pain on the left side of his chest that radiates into his left arm and up the left side of the jaw. It also goes into his back & into the shoulder blade area. He has numbness and tingling in the left arm. Ok...his left arm hurts like ****, but what you going to do? He has MVP, but the doctor doesn't think that would cause all of these symptoms. In February he had an EKG that showed ischemia and indicated that he had a heart attack. He was hospitalized because the GP said that he looked like a walking corpse. He had been in such pain, but after years of trying to get help and the cardiologist always telling him that there was nothing wrong with his heart he was used to TRYING to ignore the symptoms. In fact we had seen cardiologist that had told us straight out to ignore the symptoms that he didn?t have a heart problem. He lost about 10 pound over the 2 weeks prior to seeing his doctor. So by the time he saw his GP, I guess this time something had happened. This is where the plot thickens.... he had a chemical stress test because like many of the rest of you he has pretty volatile tremors. At this time he was so sick that he was barely able to get out of bed & make it to the bathroom in the hospital room. Every time he did get up his HR would shoot to like 160+. The nurses didn't like him getting up, but he refused to use a bedpan. He would say ?Tell me there's nothing wrong with me but insist I use a bedpan...I think NOT!? Anyway the stress test didn't provide them with the answer as to why his EKG was very abnormal and why he was having this crushing pain in his chest. He has no pain if you press on his chest. So in their wisdom they had ruled out the achy chest wall theory. So home he was sent with no answers and no explanation as to what was happening. Less than a month later he was in the ER due to continued symptoms and had an emergency heart cath. Well, guess what, nothing showed up on that as well. No blockages or plaque. So, home they sent us again. That was in March. We?ve probably seen no less than a dozen cardiologists since then because I couldn't find anyone worth the diploma on their wall. In July I did take him to the Cleveland Clinic where he was diagnosed with POTS. He was told that the chest pain was a symptom in this syndrome. After receiving the diagnosis, I again looked for a new cardiologist in my hometown area. Finally we have someone who does understand what he?s feeling and she has an explanation. She calls it "Cardiac Spasms". There is another term for this occurrence ? it?s called ?syndrome X?. According to his current cardiologist, when you have a heart cath that shows no blockages, but you continue to have the symptoms that he has, she said that the heart is reacting to a stimulus of some kind. Our new cardiologist seems to be quite helpful as far as explaining what is happening. There is a great article at www.emedicine.com/med/topic447.htm that might explain this better than my rambling. Now on to the "cure". He does take a calcium channel blocker called Cardizem. He is now up to 180 mg. I can say with all honesty that this has helped. For reasons that his docs don't quite understand, it has helped with the tachycardia. I think this is just one of those cases where each person with POTS reacts differently. He doesn?t tolerate medication very well. In fact they first tried beta blockers which he didn?t handle well at all. His heart rate dropped into the 30?s. When he?s had to go off of the meds for testing, the pain and symptoms are 100% worse. So, I guess that means it helps. It doesn't keep him from having these symptoms, but it does seem to reduce the number of incidents per week. Unfortunately there aren't many cardiologists that agree with this finding. Even though this isn't a new "theory", I have seen cardiologists that will say they don't believe in coronary artery vasospasm. I don't know if that's like I don't believe the sky is blue kind of thing or not. I wish that medical science were indeed science. It seems to me that it's more about a belief level sometimes and I think beliefs are best left for religion and not medicine. I want to also say that you have to find a doctor that wants to help you. So many that I have seen barely want to give you 5 minutes of their time. God help you if you have a difficult case like most of you have. If my husband has to deal with living with these symptoms, the least they could do is deal with the symptoms as the physician. One other note worthy tidbit, his new cardiologist is from China. She studied here, but she was raised in China. Her father is a doctor there. For whatever reason I have found that they, meaning people of eastern medicine backgrounds look at medicine and illness a little differently. Please don?t just ignore your chest pain. Even though we now have a diagnosis as to what the chest pain is, his cardiologist has told us that this too can have consequences. Educate yourselves. Good luck to all and I hope that this has helped someone to realize that this is a real and diagnosable problem. You just have to find the right doctor.