Thread: Fludrocortisone
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  #28  
Old Tue Apr 24, 2012, 03:29 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Frustrated

Hi, I've been taking a half doseFlorinef and feel a lot better. Even the swelling in my feet is a lot less.

My Dad brought his BP monitor today (still waiting for mine) when he came to see me and I expected at least 90 on something. It wouldn't take a reading. It kept saying E LOW, meaning too low to measure....my Dad took his just to compare (he's on BP meds) his read 92/54 so mine must be lower than that

We took mine standing, sitting and lying...no luck and the rhythm was off. I kept getting lots of missed beats sometimes with 2 missed beats in a row. I couldn't feel these missed beats and once again, they only happened to me, not my Dad.

It looks like I'll have to go back on the full dose...I'm really disappointed.

I'm looking forward to my next blood test...weird hey? Only people on this forum probably say that

Regards

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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