Well it has been awhile since I have posted a blog or been on. It has been a terrible start to the new year so far. I fell in the bath and fractured my arm about 6 months ago, during that time I was unable to do to much as they didn't want me to move my arm incase I broke it completely. So needless to say I put on two stone, sigh This was after losing 4 stone and it was really annoying.
My breathing had gotten really bad and I was sent to Sheffield 2 months to have a heart catheter to see if I had Pulminary Hypertension. Which I did not have, good news but I still had trouble breathing. I was taken off of my steroids and everything just went down hill from there. I could hardly walk 10 feet without getting so out of breath I would get spots in front of my eyes. For once it wasn't just attributed to my weight and they said that my heart was pumping my blood into my lungs to quickly. Which I found funny as nothing I do is every quick lol There wasn't much they could do about it.
At the end of March I started getting horrible pain in both of my feet, I couldn't walk withou being in agony. I was pretty much bed bound. This stopped after about two days and then it moved to my left leg. It was like my whole leg was in a constant cramp, numerous doctors came out to see me from my GP, but they had no idea what it was so they just gave me stronger and stronger pain medication and some Quinine. After two weeks of this the pain resolved in my left leg, but then it started up in my toes. What a nightmare! After two days of horrible pain three of my toes turned black. I went to the A&E and was seen and referred to my Rheum Clinic. I was admitted immediately and they started giving my first Iloprost infusions, which I was a bit scared of having read on here some of peoples horrible side effects. I was ok with it until the 4th dose, I had been moved to a different ward and I do not think the nurse knew how to mix it properly. Very bad headache and nausea. This didnt help my toes any though so they gave me to infusions of steriods and started me back on oral steriods.
Three weeks in hospital later and so many blood and other tests that I felt like a human pin cushion! They are still not sure why I got it, the pain in my leg was caused by a blood clot, but the toes are a mystery apparently. Some kind of blockage occurred but they dont know why it did and if I have to look forward to it happening again.
I have now been told that my condition is Mixed Connective Tissue Disease not just Scleroderma and that more than likely I will have to go on the immune suppresent medication to try to control things. I was wondering if anyone else took these types of meds and if so what can I look forward to. I know everyone is different but some ideas would relieve my mind a lot.
Am doing much better now though, still got three black toes but that will be that way for awhile they say until the new skin pushes the dead skin off. Really looking forward to that, NOT lol Hopefully I wont be walking around and notice a toe on the floor hehe