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  1. It appears that the forum was once "protected", and now it is public for anyone to google/browse? Or was it always this way
  2. Went from able to work to housebound over a year. Most of my days are spent in bed now
  3. Welcome Beneficii I think most doctors recommend increased hydration, sodium, exercise for OI in most cases at first. I think the hard part for many is when this treatment does not work, and they cant convince the dr. Many dr just dont know how to treat oi beyond that (or even what pots is). I think Vanderbilt would be worth the three hour drive, since they are one of the few places in the country with a dysautonomia clinic.
  4. I absolutely love fireworks (and anything that makes a big bang), but I did not get to enjoy fireworks this year thanks to being to sick...
  5. I have "some" regurgitation, and was told by numerous cardiologist that it is a normal finding. I have also read that regurgitation is common in athletes. I guess it probably depends on the amount of regurgitation. The echo report should list the amount of regurgitation and your general heart function
  6. This is confusing, what is considered a high folate level? Everything I seem to be reading only lists a low level for deficiency. I was prescribed folic acid, but just assumed my level was low. I was told that I have a problem with metabolism. High homocysteine level, b12 deficiency, mma mildly high (I think), low potasium, high ketones, low wbc count. I was started on the various vitamins while I wait for doctors to figure this out. My dys. dr suggested ivig, but non of the doctors seem to agree on test results. I suspect I am not going to get a defanant answer from my doctors if it is the cause of my dysautonomia
  7. http://my.clevelandclinic.org/patients-visitors/parking-lodging-transportation/lodging.aspx http://www.expedia.com/Cleveland-Clinic-Hotels.0-l6148324-0.Travel-Guide-Filter-Hotels http://www.kayak.com/Cleveland-Hotels_Cleveland-Clinic-Campus.L6313.4321.hotel.ksp Seems to be some awful rough sections around Cleveland clinic (at least it always looks that way)
  8. I dont do anything on that list other then cleaning my room up This is exactly what a occupational therapist is for! A alternative would be a living skills trainer that could assist you threw your local living skills center. They help you develop ways to accomplish those tasks independently. I recieved help before threw living skills center (because of asperger).
  9. My opinion, ask for a neurologist. The neurologist in the neuromuscular center are the same ones who dx and treat dysautonomia. I am not sure what role the CNP plays in the neuromuscular center, but I would want a doctor to look at "burning sensation inside body".
  10. thanks for the suggestions. I think I qualify for medicaid, but only if I dont work because they consider me disabled. That would pay for basic meds, but the problem is I need to be able to buy basic necessities also. I am sure I can eventually get disability, but I am not sure what to do till then. My parents do provide me with a little help and sometimes food (and a room!)but I also need to pay 200 per month in bills and at least 100 a month in medical supplies that wouldnt not be covered under medicaid. My parents cant afford to help me with all that. I am just looking to get the minimum I need to survive. looneymom, I see a dr at the cleveland clinic along with some great doctors at a different hospital. This was my local internal medicine dr. I need to find a new one Thanks everyone for your replies
  11. Just curious why you are seeing a nurse and not a neurologist or even a physicians assistant?
  12. My doctor says I am temporarily disabled, to disabled to work, but they put down on the form that they predict my disability to last one day short of 12 months, just so I wont qualify for disability. My health insurance has run out (again) and I haven't been to work in awhile. It seems my only option is to try to get a job, but if I don't get health insurance quick I will need to stop taking my meds because I cant afford them. I am going to start taking half my seizure med so it lasts longer. I already take minimum on other meds because I couldn't afford to take as often as needed. I dont know how I can work, but I feel the only option I am given is get a job and pay my own way, or die. I feel so bad, they told me I needed to apply for disability, that I would qualify, to get the papers and they would fill them out. Then they turned around and changed there mind when I showed up with the paper work. Not only that but everyone treated me so bad, like all I am trying to do is take advantage of the system or something. The stress this is causing me I cant keep any food down
  13. My original reply was "I drive", but since then my drivers license was forcibly taken from me. I really feel that I can drive, but I would need to provide proof to the state that I am totally cured before they would think about giving me my license back. It is really depressing to me, because I used to travel so much before. I haven't left the house to do anything fun in a year. I just spend all my time siting in my room now.
  14. I think you need to go to someplace like Cleveland Clinic, Mayo Clinic, etc. Regardless, good luck with your test
  15. No, I meant to keep telling them, like when you show up for the test let them know again. I would keep asking something like "are you sure you will catch me when I fall" or make comments like "the last thing I want is a head injury". The last thing you want is a head injury, so I dont think you want to have a seizure in a uncontrolled setting. Plus, it will probably not mean much diagnostically without the seizure being caught on a eeg. A eeg and stress test are totally different tests. To test for the seizure, the eeg tech could possibly have you do deep breathing, hyperventilation/valsovagal maneuver, etc. They had me hyperventilate for over a minute, long enough that my arms went numb and I felt faint. You could also ask about a ambulatory eeg, they send you home with the eeg for a few days. I also had sleep deprived eeg off seizure meds in the hospital, another common eeg. I guess I am not understanding why you are wanting to try to diagnose a seizure problem with a cardiac test I would ask the doctor about the pharm. stress test if you need it done for the breathing issue. I would let the seizure stuff to the neurologists. That brings up my next question, why is your cardiologist diagnosing a respiratory problem with a cardiac test, do you see a specialist for your breathing?
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