This is the first time iv posted . I have read many many inspiring stories though and the advice is always fab.
My story begins last July when I was diagnosed with prinzmetals angina after I had a minor MI and spending 5 days in coronary care.
Use GTN spray when needed during the night and I never leave the house without having my spray in there just in case as it normally works a treat. I was put on calcium channel blockers. Statins and aspirin. I stopped taking the Chanel blocker as it made me feel so bad and did not seem to make much difference .
Then come November I starting getting cold hands and fingers and they would go white and then blue etc. Classic raynaurds. Over the next couple of months I had regular attacks daily and my nails started to get these black marks under them and little red spots on my finger pads. Put up with it as best I could and tried to keep my hands warm,
In Feb this year my left thumb swelled up and hurt like buggery. So went to Gp as I can't take anti inflammatory tablets as had a Nisson fundoplication operation on my tummy in 2006. Due to Gerd and reflux as I was allergic to PPI's. And the Gp decided to refer me to rheumatology as he thought I had vasculitis in the nail beds and wanted the raunaurds checked as well.
Saw this lovley consultant in March By this time. My thumb was fine. But my raynauds was really bad and quite painful. She ordered loads of blood tests and scans and stuff and said see u in 10 weeks.
My raynauds seemed to get worse and worse and by Easter I had a open sore on my index finger with a nasty scab on top.
I went to the Gp at the end of April as pain soo bad and sore was now an ulcer and was turning black. he sent me to A & E after speaking to them. I was admitted to hospital for 5 day infusion treatment of ilaprost. I tolerated the treatment really well as Long as I had anti sickness and pain relief. But on day 4 the pain kicked in to an extent that I was on two hourly injections of morphine, 10 tramadol a day and paracetamol. I have never experienced pain like it in my whole life. Far worse than child birth or broken bones. The pain never seemed to go away and I would sob. The pain would come on at any time in a massive wave and be like a red hot poker being shoved down the centre of my finger and I would want to chop my hand off to get relief. I was in hospital for 7 days instead of 5.
I have been on morphine and tramadol ever since, only thing that seems to control the pain enough. Some days are better than others though but not sure why.
Saw the consultant at beginning of month hoping to get a diagnosis and treatment plan. My ulcer had not really got any better. Still hurt so much especially if knocked or banged. I would cry out in pain when I knocked it by mistake.
The consultant was not happy with my finger and the results came back very mixed and she wanted me to have even more tests. Put me on steroids, Losartin and aspirin and said that she needed to think about the next step. One option is If these meds do nothing in next two weeks she would refer me to the Royal Free hospital
to have Bosartin treatment as West Mid was not licensed to use.
Have coped really well with the steroids apart from the sweats. Drenched some nights. Three times over. And my ulcer has finally started to heal. Yay.
Went back to consultant last week and even more tests to be done as bloods come back positive in some antibodies and still can't feel my radial pulse on my affected hand. Have a right carotid bruit whatever that is. Bit she was much happier with my finger.
My vasculitis has settled well on the steroids and I keep taking all my meds. Just starting to reduce the steroids every ten days.
Seeing consultant again in a months time . I asked her if she thinks it is a connective tissue disorder or have I just been unlucky with raynauds and vasculitis. Unfortunately I didn't get answer I wanted as she said it is most probably auto immune, connective tissue disorder but can take a long time to get proper diagnosis. At least she was honest with me.
I have been unable to work since I was admitted to hospital but hope to be able to go back next Monday. As long as the pain has gone and I can type.
I try to keep the faith that I will get a good diagnosis as with all the research and reading peoples stories I really don't want to have to live with it. I admire and take my hat of to each and every one on this site that is living with or supporting someone with it.
I didn't realise how much I have written. It's only when you start writing it down that u see how much we have gone through so far. With a lot further to travel .
We must always try to have positive forward thinking. And without my friends and family's support and love I would never of got through it, to this point.
Thank you for taking the time to read my story and I will keep u posted. Love and big hugs to everyone. Xx