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WifeofPotsMan

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  1. 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!!
  2. 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.
  3. 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
  4. 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
  5. 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
  6. 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 n
  7. 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 inf
  8. 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 vis
  9. 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 hear
  10. 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 ano
  11. 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
  12. 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
  13. 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 hi
  14. 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 ca
  15. 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
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