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mechamoss

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  1. Aside from an anti-seizure medication an old neurologist gave me the option of trying (which I opted against due to dangerous side effects) and previous steroid injections for chronic pain I'm not on and haven't been on anything for years. My bp / heart rate fluctuate dramatically making beta blockers not a good choice. I've been able to go to physical therapy for a few months now but that counts for jack to a lawyer since apparently a PT's testimony means nothing in court. No doctors want to touch me till I meet with a new specialist in May but I just can't wait that long. Heck I can't even stay in a homeless shelter without being in a work program and my local vocational rehab office is backed up to **** and back. I guess I'm just having trouble wrapping my mind around why I've been form lettered that I have insufficient evidence for a lawyer to take my case when I'm going through all the correct motions. I can't figure out a next step and my physical exhaustion, cognitive fog, and mobility difficulties are making basic functioning extremely challenging. I'm sorry to ramble; I'm just at the end of my rope.
  2. Thanks SarahA33! I've moved copied everything up into the main post. Feel free to delete the extra blank comment marked delete. To anyone just scanning the thread: I'm still in a bad spot and very much in need to advice. I can't figure out what type of evidence I need for a lawyer to give me the time of day.
  3. 1. Other - I have been cut off from all my favorite forms of self care due to POTS / other medical issues. Despite my best efforts I have been unable to find satisfying or fulfilling alternatives. Not being able to work or make money is an enormous barrier to maintaining basic necessities, let alone self-care.
  4. 1. Other - brain fog Also just wanted to chime in to say that a follow up survey with the ability to select multiple categories or with more detailed groups of questions might provide further insight. For instance I noticed a few questions received zero answers in certain categories that I would consider significant challenges for myself, just not the most significant challenge overall. Basically, the lack of responses to certain categories shouldn't necessarily be taken to mean they aren't important areas that need addressing.
  5. Of course, I understand. Anything discussed via pm would always be in confidence. Thank you very much for the specific listing! That gives me something concrete to explore with a lawyer.
  6. Could we get an updated link? I'm definitely interested in this.
  7. Mods feel free to delete this particular comment - Merged post was here but has now been pasted back up top.
  8. I've was diagnosed with POTS / Dysautonomia by Dr. Robert Shields in the neurology department. He has since gone on indefinite leave for reasons I'm not sure of but my experience there was night and day compared to incompetence, skepticism, and unprofessional behavior I'd experienced elsewhere for years prior. His staff was organized, courteous, and professional albeit extremely busy. I filled out a detailed digital questionnaire while waiting to be seen and after some further testing my diagnosis was confirmed. I was also sent for additional testing the same day post-apt as well as given a 24 hr EKG to wear home and send back. They gave me a pamphlet explaining each test and where to go along with directions about how to access their online my chart service. The staff throughout the entire clinic (not just the neurology dept.) were wonderful and I never felt bad asking for directions. These people see this stuff every day so I have no doubt there are doctors who would be more than familiar with dysautonomia / EDS and able to help. That said because they are super busy I'd definitely recommend making a list for yourself of stuff to discuss / what specific outcomes you're looking for to keep you on track (it helped me at least). Also while the online communication can be "faster" I found things really progressed faster when I called the office directly. Heck, both can never hurt. If you've already been diagnosed you may want to look into seeing if you can get transferred as a patient since I've been told that can be faster than waiting months and months for a new patient appointment? Finally, I wouldn't cancel your current appointment even if you schedule with a different provider down the road. Getting established can never hurt with expediting stuff. Good luck! I really hope they can help you.
  9. Not in New York unfortunately. Did your brain fog not come into play in court?
  10. I've looked into a lot of these but there's a few I've never heard of before too - thank you so much Yogini. It's somewhere to start.
  11. I'm not sure where you're located but yes, I'd be immensely grateful for a name! Dang, sounds like you were much better prepared in the records dept. I experienced some gaps in insurance because I couldn't afford it but I saw as many doctors as I could. Unfortunately even after testimony that it must be medical from various psychs pretty much every provider I saw was convinced it must be psychological since it's easier to pretend your patient is just refusing to seek the treatment they need rather than admitting you don't know the answer (was even refused a tilt table test when my primary symptom was syncope). Speaking of, I've experienced syncope and near-syncope for years; its surprising to me hearing that it's supposedly an auto-qualifier when compared with my experience of lawyers treating it as useless info.
  12. My previous post has been lost to the update ether so I'm re-posting for now. Again, I understand that no one can provide direct legal or medical advice but any experiences or info. is very welcome. I'm having zero luck finding a lawyer to take my case despite a positive tilt-table / POTS / Dysautonomia diagnosis and a vocational assessment that found me unable to work. I also deal with insomnia, brain fog, chronic pain, myoclonus, and gut issues but am having trouble providing proof in the cut-and-dry blood test way SSI requires. I know some fibro cases are won through equivalencies but have been blown off every time I bring this up. I'm not sure if it's a lack of familiarity with my condition, a time vs. payout imbalance, them simply not wanting to deal with a homeless client, or all of the above. So, questions: How did you find your lawyer? My state bar won't provide me with names because of my homeless status. All they'd give me was the info for an underfunded organization not taking new clients for a year+. I've already exhausted my two local NOLO and NOSCR recommendations with no success. What evidence did you present that worked in your favor? Did equivalencies come into play at all? I'm having enormous trouble providing sufficient proof in the way SSI demands. Am particularly interested in cases won at the judge / hearing level. Have you ever had a Functional Capacity Assessment? What does it entail? My primary is out of their depth and no one wants to touch me until I meet with my new POTS specialist in May. She's recommended a FCA in the meantime but has no idea what it entails, who for-sure does them, or even what the CPT code for one would be (so I can check if it would be covered by insurance). Regardless, thank you all for your reading.
  13. @Katybug Sorry I should have been more explicit! Since no one in the thread really has any direct experience or knowledge it's unfortunately not too helpful for my purposes. I'm trying to separate educated guesses from actual experiences. I'm struggling to stay off the street so being able to rule in / out avenues to explore is crucial. Obviously leaning toward dismissing it but I figured it couldn't hurt to see if anyone had any new information.
  14. Given my own research and what I've learned from the specialist who diagnosed my dysautonomia / POTS I'm wary of a place that charges a few grand up front (not to mention is located in Satan's armpit; heat intolerance + Texas doesn't seem like a good match to me). Has anyone heard of them or undergone treatment there? What's could they possibly be doing that's not available to specialists in their respective fields?
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