This is so complicated and not really sure where to start. I'll try to be concise and factual and not ramble on and on....
Ok, i'm 38 have aggressive RRMS and currently in year 3 of treatment with Tysabri (Natalizumab) which is not really holding me as well as i would have liked.
Have had swollen lymph nodes for over 2 years which dr's said i was just skinny, but i also have drenching night sweats which soak through 3 sets of pyjamas a night. My hair is wet and the bedclothes and pillows (, my husband wakes me to change my clothes.
Have fibrocystic breast disease and had some lumps examined which they scanned and said appeared to be normal.
Referred to Haemogologist for further testing which has shown the following:
slightly raised white cell count for about 3 years now
WBC 11.9 (been like this for long time)
Low sodium prob from drenching night sweats. I had a thyroidectomy in 2001 so am on replacement for that and don't swing wildly out of control anymore so prob not that that's causing my problems now. It has always been easy for docs to blame everything on the thyroid but i don't believe its that.
Went for US guided biopsies yesterday, was all prepped and on the table then they come out and say theres nothing to biopsy in lymph nodes??? I asked him to examine me and check the nodes and he didn't say much just that there isn't anything to biopsy. I asked if there was anything that showed on my CT scans and he just kept repeating about nothing to biopsy so i kept asking if my scans were clean. He just turned and said i have some spots on my lungs!! Turned and walked out the door and left me standing there in total disbelief.
Its so hard to know wots going on and no one is telling me anything!! Ive had flow cytometry but don't know results and don't know if anything else showed on scans....
Totally desperate right now and would appreciate any help with this?
Many thanks xx