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Everything posted by Monstrosity

  1. I saw a rhumatologist friday who has suspicions of mito for my case. He also spoke of Cohen and said hes currently at akron children's hospital. If I have to see him im 20 minutes away.
  2. I'll have to ask my mom if I was Vaccinated for it, I have no idea... I know I got Chicken Pox bad around the age of 5. A few years later my sisters got it and I got it again just not as bad. Somewhere after I turned 21 I had shingles (at least that's what they think it was) for a brief period of time.
  3. 1. POTS is just a collection of symptoms. "Something" is causing them... I wish I would have pushed a few of my doctors the first year to finding the root cause rather than treating the symptoms. I'm now pushing them and being very direct about what I want. If they cant help me/want to run tests no hard feelings I'm off to see someone else. 2. This illness is very individualized. Be careful reading too many negative examples of people with POTS/Dysautonomia. Its very easy to get trapped in a black hole and not be able to find a way out... 3. Dont forget to continue living. Push to stay working, going to school and being somewhat normal. I feel like I put about 2 years of life on hold. I stopped/gave up so many things I enjoyed. If my finances are in order I'm going to buy another motorcycle towards the end of summer. I know its risky to ride and will be even more risky with dysautonomia however I don't care its something I enjoy.
  4. I can still half *** grow a full head of hair but know I'm pretending if I tried.
  5. I get them and its one of the symptoms I hate the most. http://en.wikipedia.org/wiki/Myoclonus
  6. Has anyone on here scene Dr. Orem? One of the support groups on Facebook has been posting good things. http://www.goodsamdayton.org/physician.aspx?id=19884&phid=28312&ppctn=yes
  7. http://jnnp.bmj.com/content/76/7/1034.full.pdf
  8. You could try UH but I had a bad experience there. I went back to the CC
  9. The one bit of advice I like to give any dysautonomia/POTS patient is don't be a victim to the "practicing doctors". What I mean by this is that were simply labeled for having a collection of symptoms. Work towards finding the root cause and attempt to fix that. This site has a good list (not on the forum) of things that could be causing your autonomic dysfunction. Some doctors will be quick to dismiss or overlook possibilities Also try to keep some normality in your life. I work 40+ hours a week. I work on my house. I go to the gym 5 times a week. **** yes this is all a struggle but I keep pushing forward. I do believe laying around for hours/days is the worse thing we can do. If a doctor doesn't seem to understand whats going on I find a new one. Trust your gut instinct I've learned to since an IV treatment and beta blockers that put me in a horrible state last year. If meds work for you take them if they don't stop, trust your gut instinct.
  10. Tinks you need to see a good Neuro Surgeon that is familiar with Chiari. Unfortunately most neurologists are clueless and dont seem interested in Chiari unless its a huge herniation. I cant stress enough read up on Chiari and the dr's that perform the surgery. I would be very cautious on who I would trust with treatment.
  11. Lots of good posts already so I'll just say both!
  12. I get myoclonous and hate it... Its intermittent and usually at rest.
  13. He diagnosed me. Great for the cardiology part of things. He will rule out the heart has any issues and then send you to a Neurologist.
  14. Also here are some good sites to check out for Chiari information: http://www.conquerchiari.org/index.html http://www.chiarisupport.org/ I do personally think Chiari brings on and is the root cause for many with dysautonomia. On the first link it states a high percentage of miss read MRI's. POTS is just a collection of symptoms and has no true diagnosis code. Chiari does.
  15. I have Chiari 0 as well. Did they check the rest of your spine to see if you have a syrinx? I need to have the rest of mine checked but my copay for the other 2 areas is expensive. When I finish paying off the head and neck I'll have them done.
  16. Either extreme puts a hard hurtin on me...
  17. Today was just one of those days...

  18. I've learned to take what I read about our conditions with a grain of salt. The medical world dosent have a good grasp on our "syndrome" in my eyes. Dysautonomia can be caused by a lot of things. Finding what caused it and treating that is key. Not to mention Wiki can have some unreliable info on it. You never know who's writing that stuff. Like I said I'd take that with a grain of salt....
  19. He was the first to diagnose me. Pro's: Very nice and easy to talk to. Appears smart on dysautonomia Dosent like the term POTS feels its a garbage can term Will rule out anything heart related Will recommend you to a Neuro Cons: He dosent seem to have a good grasp on the neurological side of our dysfunctions (granted he's not a neurologist) The Cleveland Clinics billing department is horrible... I also saw Dr. Cherion and Dr. Polston who are both Neurologist. Cherion is stuck on that I have mygraine syndrome and Polston grew frustrated with me quickly... The clinic has fantastic diagnostics but treatment hasnt been all that great. At the same time I'm not one for treating my symptoms I'm all about finding the root cause and fixing it!
  20. No diagnosis code, and its a collection of symptoms. Root cause thats what I want to know. What is causing my autonomic dysfunction.
  21. I struggle with the acceptance too.
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