Generalized lymphadenopathy, NO diagnosis....HELP

[Teezie]

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.

[DebM412]

Your symptoms along with the nodes sounds like possible lymphoma. You have weight loss, night sweats, itching, rashes, enlarged nodes, etc. It could be some other problem but it sure fits the lymphoma profile. Your next step may be to see an ENT and have a neck node removed for a biopsy.
Please advise if you are having any fevers.

Debbie

[Dennis MD]

Hi.
I agree with the previous post.  You are experiencing symptoms and that warrant further evaluation.  Lymphomas can present with symptoms of fever, weight loss, itchiness of the skin, or sweating.  These are the “B” symptoms of lymphoma.
I would suggest a repeat biopsy of the lymph node to rule out the possibility of lymphoma.  There are other conditions that can present with enlarged lymph nodes.  Examples are infections and metastatic carcinomas.
Good luck.

[Teezie]

Hi, thanx 4 your prompt replies. In response to your questions, i will add......My normal body temp is 36-36.3 and is often raised to 37.3-37.6, which does feel quite warm 4 me. The problem i have with the nodes in my neck is that they only seem to reach 1cm and then a new one appears, hence the reason why haem want to biopsy my groin nodes, which are now quite large and visible. I do sweat more during the day even tho it's quite cool at the mo, especially under my arms. Last cold etc occured in May 06. I have had some bloods done, results are......HIV-, CMV+(titres), EBV+(titres), HEP A B C all-, ANA+@1:40(borderline) and speckled, fluctuating RBC sometimes thro roof then anemic, CRP is ok.I have also noticed that i am bruising very easily on my arms and legs, i was on the phone one day and actually felt one come up on my foot!! Would the CT scan have picked up everything, bearing in mind that i had that on 6th nov 07 and wot do u think about the rock hard node where i had my first biopsy done. Thankyou for listening to me babble on!.........................x

[Dennis MD]

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.  

[Teezie]

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.

[Teezie]

"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?

[Dennis MD]

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.

[Teezie]

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.

[Dennis MD]

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.

[Teezie]

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

[Teezie]

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

[Teezie]

Just an update. Got my biopsy booked for the 2nd of April, both sides of groin now 3 cm. x

[Dennis MD]

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.  

[Teezie]

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  

[Teezie]

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

[cassbaha]

how did surgery go? should you be expecting quick results? Im getting my neck lymph biopsy april 10th. how are you feeling?

[Teezie]

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

[Teezie]

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

[cassbaha]

Surgery went well...I'm getting my results today. Im sooo nervous. Have you gotten your results yet?

[geebop1978]

still thinking of you, fingers are crossed that you find something out. please keep us all informed.
regards Geebop

[cassbaha]

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.

[geebop1978]

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

[cassbaha]

thanks a bunch. Hows everything goin? Have you recieved a diagnosis yet???
Let me know....
Take it easy.
Cassbaha

[geebop1978]

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