Hi everybody! I have been struggling for awhile now and have not been visiting KA as I was a few months ago. I see there are lots of new faces and ofcourse many of the "old " ones- (old in longevity on KA not in age). It looks like I have lots of reading to catch up on.
Just to let you guys know what has been going on...
I had been taking SSZ since July and Enbrel since Nov(ish)- unfortunately my overall heath continued to get worse after an inital period of feeling better- after waking up one day in late Dec. and being unable to turn my head at all plus the pain of an icepick into my skull- the resulting array of xrays and MRI- the doc decide that I should drop all meds- fortunately I had just had my Enbrel shot the same morning and he decide we should only drop the SSZ. 3 days later, no icepick and I could move my head as well as before the SSZ. I should also mention that I had a steadily increasing numbness in the fingers, arms, and left leg over several months that accelerated very rapidly at the end of Dec. which had been a huge concern as well.
Good news- back to pre SSZ conditions
Bad news - back to pre SSz conditions
The verdict is that the Enbrel/SSz combo was causing all the increase in symtoms.
Outlook is that NOW maybe I will begin to see an improvement due to the Enbrel. I feel I am beginning to. Pain medication usage is very much decreased- that is a huge mile stone.
Big shocker- I had genetic blood work done to start the Enbrel- I am HLA B27 negative! I tried my best to get unDx'd with AS- doc says no go- fused spine = AS. (interesting note is that a previous test came up positive) I did see that there was some new genome research but have not read up on it- I am sure there are some of you who have posted on this.
I have started counseling specific for adjusting to chronic illness and pain. I think this is a good thing.
The battle for disability and medical insurance rages on- I try to think of this as a good - it keeps me fighting the good fight.
I have missed KA and everyone on here- I am very sorry to have just blinked off and I hope everyone is having a good start to the new year. I will be reading to catch up- Hugs to you all!!
