Discussions By Condition: Cancer

Generalized lymphadenopathy + other worrying symptoms

Posted In: Cancer 10 Replies
  • Posted By: Teezie
  • March 6, 2008
  • 02:48 PM

Hello all. I have posted in a couple of the other forums, but after reading here thought i might get some advice. I am a 34 yr old female living in the uk + my problem started in June 07, when i found just 1 small hard fixed lump behind my right ear. My dentist recomended i c my doc, which i did in Aug + she told me it was a lymph node + that i also had them in my groin. Went to haem in nov + they admitted me 4 tests. CT scan-normal, bloods-normal, biopsy of right groin node-reactive. last infection i had was in May 06 + my CRP levels r perfect, so no infection there. Currently being shoved from pillar 2 post it seems. Dermatology 4 livido reticularis(purple skin mottle) and eruptive rash, he thinks lupus is poss. Gastro 4 loose bowels + weight loss(21 pounds so far). While all this has been going on lymph nodes have popped up all over the place. Neck, armpits, groin, behind knees + left wrist. I ache all over, particularly neck + back, am mildly anemic, soooooo tired, have temp swings, get very hot in bed tho only sweat bad occ. Haem have recently virtually accused me of being anorexic, but i eat loads 2 try + keep my weight up. They say i have nothing 2 worry about cos apart from groin nodes which are really visible, other nodes only measure about 1cm. Thing is a new one appears, grows to about 1cm, stops growing then another pops up. Also started gettin a red pinprick rash on both legs + lower abdomen. Sorry this is so long but am worried that summat is very wrong. Haven't been able 2 work since Nov cos i feel sooo ill but no-one seems 2b listening to me and i dont no which way 2 turn anymore :(

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10 Replies:

  • Hello all. I have posted in a couple of the other forums, but after reading here thought i might get some advice. I am a 34 yr old female living in the uk + my problem started in June 07, when i found just 1 small hard fixed lump behind my right ear. My dentist recomended i c my doc, which i did in Aug + she told me it was a lymph node + that i also had them in my groin. Went to haem in nov + they admitted me 4 tests. CT scan-normal, bloods-normal, biopsy of right groin node-reactive. last infection i had was in May 06 + my CRP levels r perfect, so no infection there. Currently being shoved from pillar 2 post it seems. Dermatology 4 livido reticularis(purple skin mottle) and eruptive rash, he thinks lupus is poss. Gastro 4 loose bowels + weight loss(21 pounds so far). While all this has been going on lymph nodes have popped up all over the place. Neck, armpits, groin, behind knees + left wrist. I ache all over, particularly neck + back, am mildly anemic, soooooo tired, have temp swings, get very hot in bed tho only sweat bad occ. Haem have recently virtually accused me of being anorexic, but i eat loads 2 try + keep my weight up. They say i have nothing 2 worry about cos apart from groin nodes which are really visible, other nodes only measure about 1cm. Thing is a new one appears, grows to about 1cm, stops growing then another pops up. Also started gettin a red pinprick rash on both legs + lower abdomen. Sorry this is so long but am worried that summat is very wrong. Haven't been able 2 work since Nov cos i feel sooo ill but no-one seems 2b listening to me and i dont no which way 2 turn anymore :(PS.............about 1 month ago noticed that i occasionally get a numb pins and needles feeling in my left hand and foot, my left eye has also started to twitch?????????????x
    Teezie 52 Replies Flag this Response
  • Does anyone here want 2 no wots happening, here goes................Went to haem last week and they want to biopsy 3 nodes in left side of groin which are 1/2 the length of my little finger, big i guess. Severe night sweats now which wake me but also milder ones that i sleep thro ( my hubby lets me no when they happen ), pinprick red dots appearing on my legs and abdomen but bloods ok. Am normally quite bubbly but starting to worry, would you???????
    Teezie 52 Replies Flag this Response
  • Hi. i really feel for you. i am going through a simalar thing and nobody seems to know much about lymph nodes on here unless your bloods say its an infection, which doesn't seem to be the case.keep going back to see your Dr and let me know how you get on. i dod find something called castlemans disease, not sure if you have read up on it but worth a look.good luck take careGeebop
    geebop1978 8 Replies Flag this Response
  • Hi. i really feel for you. i am going through a simalar thing and nobody seems to know much about lymph nodes on here unless your bloods say its an infection, which doesn't seem to be the case.keep going back to see your Dr and let me know how you get on. i dod find something called castlemans disease, not sure if you have read up on it but worth a look.good luck take careGeebopHi Geebop, isnt this a ****h??:( Saw general surgeon yesterday and even tho im on a 2 wk cancer wait he cant biopsy my nodes untill the 2 may. :eek:Thats because he wants to give me a sleepy general so he can take his time. Gavin ( surgeon ) is as disgusted as i am and is going to push for an earlier slot as he agrees that 1cm in Jan to 3cm now is a vast growth. What are your symptoms?? Will look up the castlemans thing, thankyou.:) RegardsTeresa x
    Teezie 52 Replies Flag this Response
  • Hi i'll keep my fingers crossed for you. i have enlarged lymph nodes too but no infection, they are enlarged under both arms both groins bothe sides of my neck, collar bone under jaw chin and in front of my ears. i have a itchy rash that seems worse on the back of my body and itches more on a night time, my gp thought it was a virus but its still there had it for months now. i am tired all the time but again gp thinks because i have 4 kids then i should feel tired running round after them but my youngest is almost 3 years and sleeps all night, this tiredness is unusual for me. i also have trouble gaining weight but as i am a busy mum the drs aren't concerned. none of my nodes are ever painful or ever reduce in size they seem to slowly get bigger. i keep getting passed from the ent as my voice is hoarse to the breast clinic because of the size of underarm nodes. the breast dr did a core biopsy and said i have reactive lymph nodes ? he didnt say what this means or if there is any treatment, he also said my nodes show thickened core disease, again no idea what this means. the drs just seem quick to say all is ok without actually doing anything constructive. one dr said an open biopsy on a few of my nodes from different places would be my best option then another biopsied the biggest one and never looked at any others apart from axillary ones. most of them feel rubbery apart from a few that are really hard like stones. i get fed up and tired of going back to drs when i am not in pain so keep putting it off when all i want to do is shout at them to do something lol. i have to go back to ent on april 17th so will tell them what i think and ask them to send me to a dr that knows about nodes lol.anyway i'll keep you posted if you do the same, sounds like we are medical enigma's lol. not sure i like to keep confusing the drs though.one day maybe we will get an answer.thinking of youGeebop
    geebop1978 8 Replies Flag this Response
  • Hi i'll keep my fingers crossed for you. i have enlarged lymph nodes too but no infection, they are enlarged under both arms both groins bothe sides of my neck, collar bone under jaw chin and in front of my ears. i have a itchy rash that seems worse on the back of my body and itches more on a night time, my gp thought it was a virus but its still there had it for months now. i am tired all the time but again gp thinks because i have 4 kids then i should feel tired running round after them but my youngest is almost 3 years and sleeps all night, this tiredness is unusual for me. i also have trouble gaining weight but as i am a busy mum the drs aren't concerned. none of my nodes are ever painful or ever reduce in size they seem to slowly get bigger. i keep getting passed from the ent as my voice is hoarse to the breast clinic because of the size of underarm nodes. the breast dr did a core biopsy and said i have reactive lymph nodes ? he didnt say what this means or if there is any treatment, he also said my nodes show thickened core disease, again no idea what this means. the drs just seem quick to say all is ok without actually doing anything constructive. one dr said an open biopsy on a few of my nodes from different places would be my best option then another biopsied the biggest one and never looked at any others apart from axillary ones. most of them feel rubbery apart from a few that are really hard like stones. i get fed up and tired of going back to drs when i am not in pain so keep putting it off when all i want to do is shout at them to do something lol. i have to go back to ent on april 17th so will tell them what i think and ask them to send me to a dr that knows about nodes lol.anyway i'll keep you posted if you do the same, sounds like we are medical enigma's lol. not sure i like to keep confusing the drs though.one day maybe we will get an answer.thinking of youGeebopHello again. Medical enigmas eh,lol, walking mysteries ( when were not too tired that is!!):D. My first biopsy showed reactive too, it means that your immune system is fighting something, normally infection or virus. However, it would seem that this is where us medical enigmas baffle everyone as we dont present with either of these, do we?? I am also exhausted. 12 months ago i was working 2 jobs, exercised 4-5 times a wk, ran a lovely home which contains 2 kids, 1 hubby and a pooch. Now, im wrecked by the time i get up and walk downstairs. I lost alot of weight and now keep it steady by eating crap ( when i have an appetite! ), my doc thinks i look good and that its good im not losing any more, but the kind of food i eat now and the way i look is just not me. I can also feel some small rubbery nodes just below my collar bone, i have to shrug my shoulders but they are there. Sometimes when i wake up, one is quite prominent but seems to go down during the day. This has been going on since june last year and i do now sometimes experience "toothache" where my nodes are. I also have them at the back of my knees, i have been told that this is unusual. Dont you worry yourself about confusing the drs, lymph nodes dont just swell for no reason, something is happening to our bodies and we know our bodies better than anyone else, dont we? You keep pushing for an answer and ill do the same. Anytime you need a chat.........................x ;)
    Teezie 52 Replies Flag this Response
  • Hi there folks,I am sorry to hear you are both struggling without answers. I thought I'd mention I have Sarcodosis and have all the symptoms you've mentioned especially the 'rubbery' lymphnodes. Sarc 'usually' starts in the lungs but can also start in the lymphs and not include the lungs. Its a bit of a mystery disease as in they dont know what causes it or how to cure it but there is treatment available. There is one Dr Trevor Marshall who has some interesting answers and research though. I have had it for about three years but only diagnosed last Oct. I am not on any medical treatment but take lots of herbal remedies to keep me going.I hope this is of some helpTake care,Lucylugs
    lucylugs 1 Replies Flag this Response
  • Got a call out of the blue 2day, biopsy scheduled for Monday, FINGERS CROSSED ............X:)
    Teezie 52 Replies Flag this Response
  • Hi Teezie, any news yet? keep having a look to see how you're getting on. please keep us posted.i have a ent appointment on thursday but not holding much hope out as they dont seem to listen, but will keep all updatedregards Geebop
    geebop1978 8 Replies Flag this Response
  • Hi Teezie, any news yet? keep having a look to see how you're getting on. please keep us posted.i have a ent appointment on thursday but not holding much hope out as they dont seem to listen, but will keep all updatedregards GeebopHiya, sorry its been a while, not felt too good tho surgery went well they say. Get my results next week, such a long time to wait but they say its cos of where they send em, amount of tests they do, bla bla bla!!!!!!!!! Got 2 ping pong balls in the side of groin they biopsied, did av 3 nodes @ 3cm on that side so maybe the remaining ones are reacting to the surgery????? The 3cm one i have on the opp side seems to be growing tho, quite big and quickly. I have one thats popped up on my shoulder, tho only small, but a few have also appeared in the lower part of my neck very close to the hollow of my collar bone. How did your appointment go, please keep me posted, wont be as long replying this time PROMISE!!!!!!!!!!!!!! Teresa xx
    Teezie 52 Replies Flag this Response
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