Testing for a Rare Syndrome this week

Yesterday I went to the doctors office because my throat was sore and I had a fever.  Being that it was Friday and strep has been going around I felt I prob didn't need to wait till Monday to be seen so I went in.
My doctor is extremely kind and always goes out of his way to ask about my "arthritic" problems even if I am not there because of them.  He knows the journey I have been through and the many test and possible diagnosises that I have been given.  With that said, he understands my frustration as well. So this visit, once we got the throat and fever situation figured out he asked me how my aches and pains were doing.  I told him I have been doing very well since being put on B12 shots and taking VitD and of course the warmer weather always helps my joints.  I told him that the very thought of winter makes me want to cry because I don't tolerate the cold weather well at all.  It makes my joints swell, burn and  stiffen...which HURTS!  and my muscles tense up which HURTS! too, both of which increase my pain.  And when I am in pain it totally wipes me out so I feel overly fatigued very easily.  This happens every winter season and has for atleast 3 years...I have adapted to where I don't get out much in the winter and I have a sky high heating bill and I soak in a hot tub atleast 3x a day.  But I told him its not just that, I don't like cold places either...meaning like DOCTORS OFFICES, restaurants, theaters, ect....my body gives the same response...I can tough it out because I don't have to be in those enviroments long...but winter is nearly 5 months long. So he looked through my labwork history and my other histories and said it is quite possible that I have a rare syndrome called CYROGLOBULINEMIA.  This is a blood disorder where your blood gels when subjected to extremely cold temperatures but returns to normal when in a warmer enviroment.
 Having  an extremely low tolerence to cold temps is a red flag to this disease and causes all of the same symptoms I have as well as usually coexist with autoimmune diseases which I have (Connective Tissue Disease in my case). He assumes if I have it that mine is a very mild form, which is good.  It is rarely fatal (only if left untreated) and is highly treatable!  He did say I may want to consider moving to a warmer climate....how I wish we had the money to uproot and move to Miami!!!
So, even though its kinda of scary to think I may have a rare blood disorder, I was slightly relieved to have a single possibilty instead of 800 possibilities. Right now he has put me on Nefedipine, which I was on when I was pregnant with both kids to help stop contractions during preterm labor. It is suppose to help dialate my arteries and blood vessels to help my blood circulate better in turn making me warmer.
I am suppose to  go back for labwork this week so please keep me in your prayers that we may finally have an answer and that it isn't anything but a mild and treatable illness:)


God Bless-
MJY