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450237 tn?1255517992

Generalized lymphadenopathy, NO diagnosis....HELP

Hi....My name is Teresa and i'm a 34 yr young mum from the UK who is desperate for some advice on what may be wrong with me. My journey began way back in June 2007 when i found a small, hard, pea size lump behind my right ear. My dentist advised me to consult my GP which i did in august. She gave me an examination and informed me that i also had some swelling in the right side of my groin and after a few weeks of her ruling out the norm, i was referred to haematology. Because i'd lost weight and was getting increasingly tired, they decided to admit me on the 6th nov,  for tests which included a CT scan and inguinal node biopsy. CT scan showed normal and biopsy of node showed reactive. Since then i have developed enlarged nodes in both sides of neck, under both armpits, both sides of groin, behind knees and what feels like small rubbery lumps between my ribs on my chest wall. I went to haem last week who questioned my eating habbits because i had lost more weight and i basically felt like an anorexic lunatic!!!!! He wouldn't even listen 2 my other symptoms which are......increasing frequency of night sweats, burning itching mainly on my arms, extreme fatigue tho i am now mildly anemic, pins and needles in the left hand and foot also eye twitch on that side, hair loss and a pinprick blood rash that is developing on my legs and abdomen, which appears to be under the skin. He did mention that my left inguinal nodes are quite large ( x3 about the size of 1/2 my little finger ) and that maybe i should have another biopsy done. Thing is, i learned that these nodes are very poor for obtaining a diagnosis and am worried that these nodes will only show reactive again, however all my other nodes seem to grow to about 1cm and then stop but thats when a new one appears. Also where i had my last biopsy done, the node there is rock hard, is this normal after 4 months???? Things just don't feel right, as a person you know your own body and something is wrong but i feel i'm having 2 fight for answers.
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450237 tn?1255517992
Its been a while since i last posted, been battling to come to terms with my dx. I know that my diagnosis is not lymphoma but systemic lupus, however i still have some concerns. I have been prescribed prednisolone, 10mg / day and it was hoped that the steroids would decrease the size of my nodes. However, after 7 weeks of treatment,  they are still there, everywhere. Where i was biopsied last ( inguinal ), i have a swelling just a bit smaller than a ping pong ball, very hard and fixed. My specialist asked if it had been like that since surgery ( April )  and i told him that it grew to that over a few weeks post surgery, he didnt say much to that but he did look at me a little funny. I can also feel a smaller one growing along side it, he wants to see me again in 2 weeks. As most of you will be aware, i have endured 2 cancer scares since nov 07 and the more research i do with regards to lupus, the more i read that there is an increased risk of lymphoma in systemic lupus patients. Probably being over anxious but any help or advice would be greatly appriaciated.

Regards

Teresa
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450237 tn?1255517992
got my diagnosis, not lymphoma, diagnosed with lupus.
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450237 tn?1255517992
Hi guys, sorry i haven't been posting lately, not been well at all. I get my resuts nxt week and i'm getting pretty nervy. I asked my consultant why the hell it takes 3 wks to recieve the results and he says it's where they send them to, number of tests they do, bla bla bla. I seem to have developed 2 ping pong balls where i had my biopsy taken from, there were 3 nodes @3cm there so am wondering if the other 2 are just reacting to the surgery. The 3cm node in the opposite side of my groin still seems to be growing though.

Am really happy for you Cassbaha, wish my results were as quick x

Will post again soon.

Teresa x
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Avatar universal
Hi there,  really happy for you with your news,  as of yet i have only had a lymph node under my arm biopsied which came back as a reactive lymph node with preserved fatty hilum and thickened core disease, i have no idea what this means lol.  as for my other nodes eg neck throat back and groins nothing has been done about them as yet,   but i will keep trying to get to the bottom of it all and keep you all updated.
take care
regards
Geebop
Helpful - 0
455726 tn?1213092830
thanks a bunch. Hows everything goin? Have you recieved a diagnosis yet???
Let me know....
Take it easy.
Cassbaha
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Avatar universal
That's great news!!  Glad all is not as bad as first thought.  i'm really pleased.
thank you for keeping us updated.
Regards Geebop

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455726 tn?1213092830
NO CANCER!!!!!! OMG!!! It was just a simple plain jane tumor, Dr. said no worries!! Im sooo RELIEVED!!!!! All the other symptoms like night sweats, and itchiness etc are still hangin around tho so I dunno what else is going on but I'll deal with it lol as long as the big hurdles were jumped I think I'll be alright.
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Avatar universal
still thinking of you, fingers are crossed that you find something out. please keep us all informed.
regards Geebop
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455726 tn?1213092830
Surgery went well...I'm getting my results today. Im sooo nervous. Have you gotten your results yet?
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450237 tn?1255517992
I got my biopsy date today, it is on monday. To Cassbaha, i am thinking of you, your biopsy is 2mo, good luck and keep us posted..............................x
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450237 tn?1255517992
Hello, well what a mess yesterday was. Turns out that even tho i'm on a two week cancer wait, they can't do the surgery till 2 May, first available slot!! My surgeon, Gavin, ia as unhappy as me, going to push for earlier date, but he wants me to have a sleepy general so that he has time to do as much as he can, then it's up to 3 wks for the results??? Will think about you on the 10th, keep me posted.

Regards
Teresa x

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455726 tn?1213092830
how did surgery go? should you be expecting quick results? Im getting my neck lymph biopsy april 10th. how are you feeling?
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450237 tn?1255517992
Severe itching today, i mean i could claw my skin off. It's all over my back, abdomen and arms, like prickly heat. Going in bath to see if it helps, can't cope with it.....x
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450237 tn?1255517992
Hello again Dennis, how are you? As far as i can tell, my tonsils seem to be ok, although for the past few days i have been having a dull throb in my left side. If i apply a little pressure there by putting my hand around the area, thumb towards the back and fingers towards the front, it feels sore, like i've bruised it. It is getting quite uncomfortable!! Oh, and these little red spots keep appearing, apart from that i'm just generally exhausted. PUT ME IN A BAG N SHAKE ME UP, ha ha.

Regards
Teresa x  
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Avatar universal
Hi Teresa.
How are you doing?
From what you can see, are your tonsils also enlarged?  The throat also has elaborate network of lymph nodes.  Enlarged lymph nodes can cause symptoms especially when it impinges on the surrounding normal structures.  Due to pressure effect, enlarged lymph nodes can cause pain on the area it impinges.  
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450237 tn?1255517992
Just an update. Got my biopsy booked for the 2nd of April, both sides of groin now 3 cm. x
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450237 tn?1255517992
Hello again!!!! Recently, you asked me to keep posting new developements, relax and stay positive. Am really trying hard to do that, but this morning i found another lump, just below my collar bone, right side. It's only small but quite hard. I know that lumps above are not a good sign, but what about below?? I am also having some pain in my neck and it sometimes hurts to swallow, but it's not a sore throat hurt, if you know what i mean. I am at haem next week but it doesn't seem to be quick enough. Thanks for listening

Regards

Teresa
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450237 tn?1255517992
Hello again Dennis, Thankyou for your continued support and yes i will keep posting. I am glad i found you guys to talk to, this really is a wonderfull place!! I'm feeling quite bad really. The pain under my rib just feels like toothache at the moment and my throat feels a little raw. So tired that i have to sit or lay down even after mild exertion. Had some good news yesterday from gastro, biopsies of stomach and colon came back clear and there is no sign of coeliac disease. Only thing is, the more good news i get like that really narrows down what could be causing all my problems doesn't it? X
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Avatar universal
Hi.
How are you feeling now?
The chest pain you experienced can be caused by a variety of conditions.  If you push or touch the chest area and experience pain, the pain could be musculoskeletal in nature.  Perhaps you strained your muscle the previous day.  But then again, that should still be investigated further as this could be related to your previous complaints.
Please do post your updates.
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450237 tn?1255517992
Thankyou for your support Dennis. Got up with another concern this morning. I felt really ill yesterday and today i have an ache under my rib cage(right side). If i push there it hurts and i get an uncomfortable feeling in my chest.  I am back with the haematologist next wednesday so should hopefully get a date for the biopsy of the nodes. It is hard to relax, considering the size of the nodes and other symptoms i am having ,i know it's not particularly good. However, i will try to stay positive.
Helpful - 0
Avatar universal
Hi.
You noted an enlargement of the lymph nodes both in your neck and groin areas.  An incision biopsy of the lymph node will give you a more definite diagnosis.  By this, adequate tissue will be taken for histopathological evaluation.  It would be best to go back to your doctor and push for a biopsy.
Relax and stay positive.
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450237 tn?1255517992
"OH MY GOD!!!!!!" My daughter said last night as she caught me getting out of the bath.
"What?", i replied.
"Those lumps in your groin are huge".
"I know", i replied
But i didn't realise just how big untill i measured them today. 3 nodes all aprox 1" in size. I have gone very cold and shaky inside, this doesn't look promising does it?
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450237 tn?1255517992
Hello again Dennis, thanks 4 replying. When i got my cmv / ebv results, the haem said that it showed low titres which indicated that i'd had previous contact and that it wasn't active, i was 17 when i contracted glandular fever.
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Avatar universal
Hi.
There is a possibility of fibrosis or scarring in the lymph node where you had your first biopsy.  This can cause the change in the consistency of that involved lymph node.  
The persistent infection, as evidenced by positive titers of CMV and EBV, may have caused the enlargement of the lymph nodes in the neck and groin.  
Helpful - 0
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