doctors appointment today and er visit

August 27, 2004

Hi all,

What a hectic week it has been. Monday i went and got the rest of my brace

that basically acts like an external halo. Then yesterday i had a neurologist

appointment. I had the cat scan they wanted this morning since i can no longer

have MRI's. Plus i have an LP scheduled for next friday. It will be under

fluoroscopy so that calms me a bit but i really hate those, but if it helps the

pain ever if it's only for a day or few I'll do it. I take as many not so

painful days as the good lord sees fit to give me. Also the neuro wanted to put

me on zanaflex again, before i was taking 8 mgs at night, well he wants me to

take it all through the day so i broke it in half so I'd only be getting 2 mgs

and took it and my neurontin, then i went to my cardiologist appointment. The

reason for the zanaflex is my neuro said there's a small chance the headaches

could be from muscle pain but he wanted to try this just to rule it out, he said

my neck muscles didn't seem tight.

Anyways i went to the cardiologist and i was getting sooo tired, i finally got

in an exam room and probably slept ina chair for an hour. My chest was getting

tight and i was sooo dizzy. I figured i was in the right place to get really

sick. When my doctor came in i was so dizzy he had to help me walk to the exam

table and climb up there. My incision is still open from my pacemaker 4 weeks

ago so he does weekly checks on it. The EDS causes the healing problems. I am

so excited for the NIH study on EDS and can't wait until i get my call, I'm

being very patient though. Anyways, he took my BP and it was 80/38. He was

very surprised and told me he wanted me to go to the ER and gte fluids, AFter a

bag of saline things were well and i was up to about 106 over something, it's

started going back down once the fluids stopped and it was at 90/60, still low

but normal for me. The PA was in there looking at the heart monitors they had

me hooked up to and asked me if i had a pacemaker i said yes, she asked what for

and i told her sick sinus syndrome, she said okay and ran out of hte room to get

the doctor, that made me start to worry. She came back in and asked if i had

ever been diagnosed with addison disease i said no what is it. She started to

explain it was with your adrenal gland and it causes low BP, then the doctor

came in and asked the same question and i asked him what it was and he wouldn't

tell me.

So now I'm worried about addisons disease, I'm gonna ask the cardio this

thursday about it at my appointment. BTW I'm not taking the zanaflex anymore.

Needless to say I'm upset about this whole thing and am so tired of having

ongoing problems, i seem to never get better and i just start having more and

more new problems, I know I'm not the only one that feels this way, but things

sure get frustrating. Has anybody here evre been diagnosed with addisons

disease.

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