Quote:
Originally Posted by krissie
how long did it take for you to get in vandy? im more interested in the clinic visit, not the research program. i have a cardiology appt mon, and will be asking for a referal. how are the meds that they put you on. my main concern is that my cardiologist doesnt know alot about NCS, well mabey he knows a little, but when its YOU that is sick and losing everything, you want the best knowledge and fast, mabey hoping to save at least a little something before i dont even have a bed to sleep in. there are days that i cant even get a phone call in to the nurse at the drs office, and if i could email straight to the dr and get answers, especially when im on meds that are making me sick. i had that problem last week, come to find out 4 days later, when they got around to listening to their answering machine, the BB that i was on was lowering my BP to the point that i hadnt been out of the bed for 2 weeks. ughhhh!!
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Well, they did the initial referral for the research program in October (I think) of last year and I had the appointment scheduled for January 22nd. However, once they started looking at my records and medications more, they decided I was not a good candidate for the research program and told me they would rather I come for a clinic visit. By this time it was already early January. So when they called to schedule the appointment, the first available appointment was October of this year!! I was so disappointed because I had already waited so long and I was ready to go! But then they went ahead and put me on the 'call list' in the event there was a cancellation. Thankfully, they had a cancellation not long after they made my appointment and they were able to move me up to March.
If I were you, I would try to get your referral going ASAP. It usually takes several months to get in at Vandy or any other facility like it. I would also really consider getting another physician involved if your's is not returning your calls promptly. That is just not good!
I know you are frustrated, I can't even begin to imagine. Do you not have any family or friends who could help you with your financial situation?? What state do you live in (you don't have to answer if you don't want to)??? Can you get any kind of government assistance??
Check out those sites I listed before. There are a lot of people who are in your exact situation and can give you a lot of advice. They come from all different states and there are lists of providers who have lots of experience with our condition and maybe someone can help you find a good provider near you who can help you until you can get into Vandy or a similar facility.
Good luck and let me know what I can do to help.
{{HUGS}}