Achilles2323 Posted April 7, 2013 Report Share Posted April 7, 2013 Thinking about going But do they have something like mayo ?Were they keep you for a week ? Like sign up or do I just go? Quote Link to comment Share on other sites More sharing options...
lynnie22 Posted April 7, 2013 Report Share Posted April 7, 2013 Hi Achilles, I was thinking of going there before I ended up going to Mayo. YOu need to check this out, but what they told me when I called John Hopkins is that you make an appointment with a doctor, period. No week of examinations, they said. That was three years ago. It could have changed. I'm not sure if there is anywhere else like Mayo, although even there, so at least my visit proved, you have to be a little lucky in who you schedule appointments with. I'm not sure they would have discovered my POTS if I didn't have an appointment with a cardiologist who was POTS aware. The endo I saw there had no clue. I would call John Hopkins before going. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 7, 2013 Report Share Posted April 7, 2013 Hopkins is not like Mayo. You have to go to see one specific doctor and that's who you make an appointment with. Each individual doc has their own prequalification routine and set of paperwork they want filled out. If you are looking for a program where you can come into town for a week and have a whole gang of specialists evaluate your case, Hopkins is not the right place. It's just not how they function. I live here in Baltimore and am lucky to have them at my disposal but each specialist I want to see is a separate process. Quote Link to comment Share on other sites More sharing options...
Natops Posted April 8, 2013 Report Share Posted April 8, 2013 Katybug is right. Each doctor has his own specialty. I saw one of their top neurologists. He even did a spinal tap on me. He could find nothing wrong with me. He told me there was nothing more he could do for me. (Btw I suffer from complete body pain, POTS , weakness and SFN.) So when I continued to find another neurologist in my local area to help me, they all wrote me off. They said Dr. X from John Hopkins was the best and if he couldn’t find anything wrong with me they weren’t even going to try.So I had to travel 4 hours away and find my current neurologist who didn’t write me off… and he clinically diagnosed me with POTS, SFN and located a paraneoplastic antibody in me (which I had confirmed with a 2nd test from a different doctor). I don’t think I’m not done with finding exactly what’s wrong with me but I’m sure in a much better place. It seems when one expert writes you off, they all write you off. It was very disheartening and a very tuff time in my life. Quote Link to comment Share on other sites More sharing options...
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