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About Monstrosity

  • Rank
    Advanced Member
  • Birthday 03/19/1980

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  • Gender
  • Location
    NE Ohio
  • Interests
    Getting rid of Dysautonomia!

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  1. Today was just one of those days...

  2. I havent been on in a while (moved into a house a month or so back and have been BUSY). Anyways to answer Wendy's question on how I related to Bruce Wayne/Batman in the movie. ***Spoiler alert for those who havent watched and are planning on it*** When the movie starts out Bruce Wayne is broken, he's a shell of what he used to be and Batman and he have been MIA. (This was my first year after diagnosis). I became a withdrawn and avoided people. Then he gets his @$$ royally kicked by Bane and is thrown in the hole (This was the past winter and I thought I was going to die. The @$$ kicking I got
  3. How did you get your Dr. to agree to do this test? This thread actually got me thinking and I called the Chiari Institute today, but was on hold for 30 minutes just waiting to speak to anyone. So I gave up and hung up. It says on their website to fill out a questionnaire and send it back to them and they'll be in touch. It's interesting because a lot of the symptoms they ask about on the questionnaire fit. I think it's a worthwhile thing for POTS people to look into. What exactly does the cineflow look at? My family doc agreed to it. I could tell he wasnt following me at all when I stat
  4. Next Friday I go for a cineflow mri with and without contrast. The Cleveland Clinic is doing it. I requested a large person MRI to cut back on the clastraphobia.
  5. Issie thats interesting that drug is helping. Keep me updated on how you are doing with it. I will keep you informed as things develop. Yogini just as that mom had a gut feeling I do as well... You said it always follow your gut, always! Naomi a regular MRI should show a drop. However the drop is only part of what a true Chiari specialist will look for. They are also looking at the spinal fluid flow and pressure. I'm still doing research and if you want further videos look up Dr. Orro on youtube. I will post them when I have time. I also ordered a few books off Amazon.com that should be here t
  6. Good for that mom, she deserves a gold star! Looks like it loaded up fine for everyone. My only point for everyone to think about is most of us are not at our root issue. POTS/Dysautonomia is a collection of symptoms, not a true diagnosis. Or should I say no diagnosis code. My one neuro wont let me use either word in his office. With that said you can draw a line in the sand but feel you shouldnt when it comes to ones health. Why do some meds work for some people while others dont??? Most of us are not textbook cases and a lot Chiari patients arent either. Cleveland Clinic re-looked at my mri
  7. Not sure how many of you saw the movie but **** it was good! I felt like the story was a direct reflection of me and where I'm at with my medical issues! For anyone that likes that kind of movies (superhero, good vs evil) go see it! I know some feel a negative vibe over what that moron did in Colorado but that was an isolated incident and that could have happened at any movie. Its a great movie I've watched it twice and I might see it a third time while its in theaters. I'll for sure buy the blu ray when it comes out.
  8. I was just told today i tested positive for hla-b27. I'm having x rays done next week.
  9. The past two winters I dropped about 30lbs. I put it back on each year by around June. I typically weigh in 190-200 standing at 6'1. I'm attempting to gain extra weight for this coming winter.
  10. count me in, however mine last for weeks not days
  11. I'm very confused now... I was told Friday that I had a 3MM drop and it was nothing to worry about... However I keep reading and have talked to other docs (not neuro's) and they feel thats a huge issue. The medical field seems torn on this subject. I dont know what to think at the moment.
  12. its too bad because otherwise the drug was helpful.
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