One big nightmare

[Teezee]

33 yr old female, started with 1 lump behind ear, june 07,now generalized, i mean they're everywhere. Last cold etc may 06. Tests so far:
6 nov - CT scan, no internal nodes
9 nov - inguinal node biopsy - reactive, told these nodes r **** 4 lab tests but were the biggest n easiest at the time!!!!!
3 dec - ebv+ cmv+ but not active, had contact @ 17 yrs
3 jan - HEP a,b,c Neg, rbc through the roof
24 jan - rbc low, mild anemia but wa thro roof on 3 jan, HIV neg, ANA+, reactive protein ( infections etc ) neg
19 feb - colonoscopy n gastroscopy, both wi biopsies, awaiting results.
Haem want more biopsies, waiting 4 nodes 2 get big enuf, meanwhile am soooooo tired n weak, come up in nasty rash occ, n have livida reticularis which is a nasty purple mottle of the skin. Temp up n down but rarely over 38, sweat easily even with very mild exertion, 21 pounds lost in weight, aches n pains n little nodes on chest wall???? Has anyone been thro summat similar, have 2 kids who want their mum back, a gorgeous hubby whos missing his young energetic wife, i just want my life back xx

[Monsterlove]

Where is the rash? Please describe it. You may need to get it biopsied to find out what this is.

[Teezie]

Hi Monsterlove + Blaze, thankyou soooooo much 4 replying. The livido reticularis covers my arms and legs, used 2 av nice legs!!!!! Shows more when im cold n goes bright purple. The other rash i present with is a bit enpredictable. My derma wants a biopsy but only seems 2 present on a night, can go days b4 it shows then BANG!!!!! It doesn't itch, but feels slightly warm, starts with a few bright red spots that eventually merge into each other forming huge red patches. My derma has called it Eruptive angioma n thinks it could av summat 2 do with my lymph nodes releasing some kind of chemical, but without a biopsy its hard 2 confirm that. I also feel slightly winded when it comes up. Dermatologist wants me tested 4 rarer things such as lupus, haem seem to b focussed purely on lymphoma (they haven't tested 4 anything else), it's all taking sooooo much time.

[Teezie]

P.S......Blaze, Not sure about the lyme, will mention on my nxt hospital visit, as 4 the other, i live opposite nothing, all fields, no pylons, mobile phone bases, nothing like that, Could there still b a link??????????

[Teezie]

Ideas anybody?????????????

[anonymoussssss]

It seems like blaze suggests those two things for every medical condition, and it seems unlikely that they'd be the cause of so many of the conditions on this board.

[aquila]

By lump do you mean swelling? Does it come and go?

[Teezie]

By lump do you mean swelling? Does it come and go?

It doesn't come and go. I found it in june 07, small round + hard. since then more have appeared on both sides of neck, under arms, across chest wall, in groin, behind knees + some in left wrist. Some are hard + fixed, some hard but mobile, others quite firm. They seem to get to about 1 - 1.5 cm then stop growing but thats when a new one appears.

[Teezie]

It doesn't come and go. I found it in june 07, small round + hard. since then more have appeared on both sides of neck, under arms, across chest wall, in groin, behind knees + some in left wrist. Some are hard + fixed, some hard but mobile, others quite firm. They seem to get to about 1 - 1.5 cm then stop growing but thats when a new one appears.

Have been told that they are lymph nodes.

[Teezie]

Just an update 4 anyone that might want 2 no wots happening. Went back to haem last week and they want 2 biopsy my left inguinal nodes now as they are getting quite big ( 1/2 the length of my little finger ). There are 3 there, all aprox same size. Seem 2b getting more night sweats, some severe, some not ( my husband has 2 tell me at times that i've had "a small sweaty thing!" ) Small pinprick red spots developing on my legs and abdomen too but bloods seem ok??????? Can't help getting worried, someone needs to sort me out. x