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Originally Posted by goodgirl
I understand what she is saying, my mother had severe Rheumatoid Arthritis and died of a complication called Felty's Syndrome. My older sister has damage from it and has done well with the treatments. I struggled more with similar symptoms plus many more and in 8 years of x-rays, MRI's and cat scans no damage other then in the neck was found. And the RA docs say RA does not hit the neck.
I had been found to have low vitamin D over a year ago and started treatment. They do know with biotinidase deficiency causes issues absorbing other B vitamins, fats, carbohydrates and proteins. I do not believe I have RA after this past week of improvement and seeing many different RA doctors, family doctor and neurologist.
I will be writing more as I find out more and my treatment changes. From symptoms that my mother, older sister, younger sister and myself. I believe RA and biotinidase runs in my family. I think my mom had both, my older sister has RA and younger has biotinidase. But that is just going by symptoms that were different between us.
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Cathy's condition was originally diagnosed as childhood Still's Disease, which progressed to RA after the birth of our first daughter 19 years ago.
Like you, she's run the gamut of so many treatments over the years I've almost lost count. We're well up to $100k these days with the various infusions (she's on her third biologic medication when she begins with Remicade soon).
At the very least, I've passed along the info you and baddog have brought up (including all that I read in your RA blog)...and I'm encouraging her to talk with her rheumatologist about the possibilities of a B7 deficiency.
Every faint glimmer of hope can only be a good thing.