Introduction pretty long

[Guest guest]

My name is Carole Stein. I live in South Florida. I have been

treated at the Cleveland Clinic in Cleveland since January, 2009 for

Mixed Connective Tissue Disease. My disease started, I believe, in the

summer of 2008, when my PCP switched me from HRT to biodentical

hormones, which the compounding pharmacy could never get right -A blood

test in August, 2008 showed elevated ANA - Then even though I was going

to work out 3 days a week, my legs started to hurt - then in November,

after a manicure, one finger started to turn blue, followed by all

fingers on both hands - then I got a herpes simplex on one side of my

lip twice within two weeks in the same place - the second time, the

opposite side of my face went numb - and swollen -

My sister-in-law got me a contact at Cleveland in December, 2008 and I

was seen the entire first week in January. The rheumatologist called me,

told me I had mctd, my cpk was around 1600 went up to 2100 - aldolase

was as high as 15 now it is 4.2 and my CPK is 385 -

Prednisone was poison to me - the side effects were off the wall -

methotrexate made my tongue swell - I have no sense of taste and little

appetite even after being off of methotrexate for 6 weeks - I went off

of pred in March, 2010 - The side effects, physical and mental were

overwhelming. I was put in the hospital in Cleveland in March, 2009 for

6 days including 4 days of IVIG - my cpk dropped 800 points - but it

hasn't dropped much since then - I made arrangements with MD in

Orlando, yes they have associate hospital in Orlando that is pretty darn

good, to do IVIG every 4 weeks - While I tolerated it well over 2 days

instead of 4 - the last treatment was horrible - so now no more IVIG - I

have been doing cellcept since October 2009. That seems to be the only

thing that is slowly working - So now I am at 3000mg of cellcept -

nothing else - my dr said that the drug of last resort is rituxan.

So I came to the conclusion that I am not going to get well - even

though I have done PT 5 days a week for 4 months - on and on -

Last night there was a Tony Robbins show on - it got my interest - so I

thought I would do one last look to see if I could find anything or

anyone else who just maybe might offer a clue. Low and behold, I guess

it is how I googled but rheumatic.org came up and a posting from LInda

Carlson - that is pretty old -

I hurt alot most of the time - my back locks, can't walk long distances,

going from sitting to standing etc is just awlful I can barely lift my

arms above my shoulders - I am sure you all know the typical myositis stuff

The good news is that my Rheumie likes me researching and actively

participating in my care. So I emailed him - Even if he knows about

this, which I am sure he does, and doesn't believe in it, since

conventional therapy isn't working - I bet he will be game.

We shall see.

Carole Stein

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Carole S. Stein

carolestein127.3@...

http://www.onlinepetmemorials.com

http://www.rainbowbridgefordogs.com

Proud owner of wood Double Dose RTD (Registered Therapy Dog)