Discussions By Condition: I cannot get a diagnosis.

One big nightmare

Posted In: I cannot get a diagnosis. 38 Replies
  • Posted By: Anonymous
  • February 23, 2008
  • 01:58 PM

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 crap 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

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38 Replies:

  • Where is the rash? Please describe it. You may need to get it biopsied to find out what this is.
    Monsterlove 2,921 Replies
    • February 24, 2008
    • 04:57 AM
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  • 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 52 Replies
    • February 24, 2008
    • 11:32 AM
    • 0
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  • 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 52 Replies
    • February 24, 2008
    • 11:37 AM
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  • Ideas anybody?????????????
    Teezie 52 Replies
    • February 26, 2008
    • 00:30 PM
    • 0
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  • 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.
    Anonymous 42,789 Replies
    • February 27, 2008
    • 04:53 AM
    • 0
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  • By lump do you mean swelling? Does it come and go?
    aquila 1,263 Replies
    • February 27, 2008
    • 03:39 PM
    • 0
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  • 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 52 Replies
    • February 28, 2008
    • 00:12 PM
    • 0
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  • 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 52 Replies Flag this Response
  • 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
    Teezie 52 Replies Flag this Response
  • Just an update really. Haem are now looking at a further biopsy of my left groin nodes, currently there are 3 all measuring aprox 1 inch in length, they were aprox 1-1.5cm in january this year. I'm just hoping and praying that they will find whats wrong with me this time then maybe i can start to get better.
    Teezie 52 Replies Flag this Response
  • Didn't happen to get bitten or scratched by acat pryor to june07.Cat scratch disease?
    TerryG 120 Replies Flag this Response
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  • Didn't happen to get bitten or scratched by acat pryor to june07.Cat scratch disease?Hi Terry, in answer to your question, no bites or scratches off any cats. Nodes in left side of groin now measure a scarey 1" each ( there are 3 altogether ), so don't think it's looking too good. Thx for replying x
    Teezie 52 Replies Flag this Response
  • Non-Hodgkin's lymphoma?http://wrongdiagnosis.com/n/non_hodgkins_lymphoma/symptoms.htm#symptom_list
    TerryG 120 Replies Flag this Response
  • do the spots blister at all if you rub them?
    taniaaust1 2,267 Replies Flag this Response
  • ;)Non-Hodgkin's lymphoma?http://wrongdiagnosis.com/n/non_hodgkins_lymphoma/symptoms.htm#symptom_listThats what i'm afraid of, i know that the size of my nodes suggest something sinister and i am getting alot of lower back pain now. Did think at first that it was how i was either standing or sitting, not so sure now. Will keep posting, thankyou for listening x
    Teezie 52 Replies Flag this Response
  • do the spots blister at all if you rub them?Hi, thx for your ?. The red pinprick rash i have is actually under the skin, you can't feel them, you just see them. However i did have what looked like a small blister on my abdomen the other day ( only the one )? x
    Teezie 52 Replies Flag this Response
  • What does it mean when lymph nodes swell in two or more areas of the body?When lymph nodes swell in two or more areas of the body, it is called generalized lymphadenopathy. This may be caused by: A viral illness, such as measles, rubella, chickenpox (varicella), or mumps.Mononucleosis (Epstein-Barr virus), which results in fever, sore throat, and fatigue, or cytomegalovirus (CMV), a viral infection that causes symptoms similar to those of mononucleosis.A bacterial illness, such as strep throat (caused by the streptococcus bacterium) or Lyme disease (a bacterial infection spread by certain types of ticks).Side effects of phenytoin (Dilantin), a medication used to prevent seizures.Side effects of measles-mumps-rubella (MMR) vaccination.Cancer, such as leukemia, Hodgkin's disease, and non-Hodgkin's lymphoma.Acquired immunodeficiency syndrome (AIDS), which develops after contracting HIV (human immunodeficiency virus). This virus attacks the immune system, making it difficult for the body to fight off infection and some disease.Syphilis, a sexually transmitted disease.Hope your biopsy gave you the answer.
    rad-skw 1,605 Replies Flag this Response
  • What does it mean when lymph nodes swell in two or more areas of the body? When lymph nodes swell in two or more areas of the body, it is called generalized lymphadenopathy. This may be caused by: A viral illness, such as measles, rubella, chickenpox (varicella), or mumps.Mononucleosis (Epstein-Barr virus), which results in fever, sore throat, and fatigue, or cytomegalovirus (CMV), a viral infection that causes symptoms similar to those of mononucleosis.A bacterial illness, such as strep throat (caused by the streptococcus bacterium) or Lyme disease (a bacterial infection spread by certain types of ticks).Side effects of phenytoin (Dilantin), a medication used to prevent seizures.Side effects of measles-mumps-rubella (MMR) vaccination.Cancer, such as leukemia, Hodgkin's disease, and non-Hodgkin's lymphoma.Acquired immunodeficiency syndrome (AIDS), which develops after contracting HIV (human immunodeficiency virus). This virus attacks the immune system, making it difficult for the body to fight off infection and some disease.Syphilis, a sexually transmitted disease.Hope your biopsy gave you the answer. Hello, thx for your informative response. I have been tested for most, if not all, viruses etc. CMV + EBV show positive for previous contact (18 yrs ago!!), Bacterial illness and std inc HIV, HEP ABC are all neg, and i am not currently taking any drugs which may cause lymphadenopathy. I see my haematologist nxt wk for a date for biopsy but given whats been ruled out, it doesn't paint a pretty picture does it. Once again, thankyou x
    Teezie 52 Replies Flag this Response
  • Hello everyone, have noticed that i am getting alot of viewers, tho not as many replies!!, so thort i'd give you an update. Anyone no the implications of a swollen node just below right collar bone?? Found it this morning. I no that above collar bone isn't good news but what about below??
    Teezie 52 Replies Flag this Response
  • Get the biopsy and let us know the results; they need to know if it is Hodgkins Disease or something related..don't mess with it.
    Monsterlove 2,921 Replies Flag this Response
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