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generalized lymphadenopathy help!!!
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generalized lymphadenopathy help!!!

hi i am a 29 year old female with enlarged lymph nodes everywhere.  i have been trying to get an answer but with no luck. i have a few questions that i can't find answers to.
what is a lymph node specialist Dr called?
what are reactive lymph nodes/treatment?
what is thickened core disease and its treatment?
i have enlarged nodes in both sides of my neck under both arms in both sides of groins in front of throat under jaw and chin in front of my ears and not sure if i have a few above my tail bone, they feel the same.
most of these nodes feel rubbery and some are quite large, however a few in my groins feel really hard like stones.  i was referred to ent by gp because my throat always looks sore but feels ok to me and i have had hoarseness for a few months now. the ent dr had a quick look up my nose and down my throat and sent me to breast dr for lump under arms,  who did ultra sound just under arms and performed a ultrasound guided core biopsy.  this is what he said in his report   normal breast tissue with prominent lymph nodes in both axillae all of which have preserved fatty hilum but with thickened core disease.  these features are benign reactive type pattern. core biopsy was performed on the largest palpable node in the right axillae and subsequent histology has revealed features consistant with a reactive lymph node and no evidence of malignancy.   he goes on to say he thinks i have globus pharyngeus with my throat problems and tells me to go back to gp if i get new problems.
although he said there was no evidence of malignancy in that particular node i am worried about the other nodes,  most of them are at least 2cm in size.  i have other symptoms too that the drs just dont seem to listen too.
i have frequent night sweats although i feel cold all day i wake up between 4.30 and 6.30 am feeling hot and having damp hair from sweating.  i feel really tired all the time and this is made worse by eating, a few mouth fulls and all i want to do is fall asleep and have done a few times at the dining table, the dr says i am tired because i have a busy lifestyle.  my appetite is very poor i only eat one meal a day as i never feel hungry and it feels like there is a tablet/pill stuck in my throat in this is made worse by eating hard foods. my weight not decreasing now but did go down quite dramatically when all these lumps appeared 2 years ago, its taken me this long to get back to a healthy weight and my appetite only changed recently.
i seem to get sent to ent and breast clinic and then still have no answers.  does anyone know what this could be?  what test/s should i ask for?  which scan is best?  
any help wpuld be gratefully appreciated
thank you in advance
Geebop1978
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Avatar_n_tn
Hi.
There is no such thing as a lymph node specialist.  The type of specialist to see when you have enlarged lymph nodes would depend on the underlying cause of that enlargement.  If the lymph nodes are secondary to lymphoma, you can see a hematologist or a medical oncologist.
Treatment of reactive lymph nodes would depend on its etiology.  If it is a reaction from an infection, then an appropriate antibiotic treatment would be needed.  
Biopsy of the enlarged lymph node would clinch the diagnosis of malignancy.  You already had a core needle biopsy with a result of reactive lymph nodes with no evidence of malignancy.  However, you have several constitutional symptoms that warrant further examination.  I suggest you have another biopsy (perhaps an incision or excision biopsy) of one of the lymph nodes.  Also, have you had other laboratory examinations like a complete blood count, CT scan of chest/abdomen, etc.?  That can help in arriving at a more definite diagnosis.
Good luck.
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Avatar_f_tn
thank you so very much for replying.   apart from the core biopsy the only other exams i had was a blood test to rule out infections , which all came back clear, they tested for cat scratch disease hiv aids just about every infection going i think.  i do not know what my white cell count was though.  i have been referred back to ent dept for the lumps in my throat and the hoarseness.  if the lumps were not getting bigger then i wouldn't be as concerned, but because they seem to grow in  a pattern and never get any smaller i would be more than happy to have at least one removed for testing.  the Dr just said i have reactive lymph nodes but as far as i know no infection or malignancy so i dont know what else they could be reacting to, the Dr wasn't much help to be honest,  i am not taking any medication either so it cant be that.
i am a little worried about the internal nodes, i dont know if they are enlarged and i'm not sure what tests i should be asking for.  i am thinking of going privately for maybe a ct or mri scan but not sure what would be best.   most of the Drs i have seen gp ent and breast Dr seem to be really concerned at first because of the size and how many are prominent but then do or explain nothing and expect me just to go away and live with it.
i am most concerned about the ones in my throat because my voice is hoarse and it feels like something is stuck when i swallow, but painless and not sore at all,  and they really do stand out although they are not my biggest ones.
i just feel like i am banging my head against a wall, they say i am slim because i have a busy lifestyle and if i weighed more i probably wouldn't be able to notice them so much which i disagree with and they put the tiredness down to being busy too although i have always been busy the tiredness was never this bad.
anyway thanks once again for replying not sure if i told you anything more helpful.
Geebop
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Avatar_n_tn
Hi.
Thanks for the clarifications.
A laryngeal nodule can cause hoarseness of the voice.  If there is a lymph node pinching on the recurrent laryngeal nerve that too can cause hoarseness of the voice.
What you can do now is to undergo further tests so that you’ll have an idea what is causing those lymph nodes to enlarge.  I suggest you have a repeat biopsy, perhaps an incision or excision biopsy so that the pathologist can work on more tissue specimen.  You can also have a CT scan of the chest/abdomen to see if there are enlargement of the lymph nodes in the chest and abdomen.  
Please do post your updates.
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Avatar_f_tn
once again many thanks will keep my posts updated.
i wondered if my voice could be because of a lymph node, as it is obvious there is something there, it looks like a males adams apple.
thank you
Geebop
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Avatar_n_tn
Hi.
Thanks for the update.
There is a possibility that there will be changes in the voice especially if there is involvement of the laryngeal nerve secondary to the lymph node enlargement.  As I’ve mentioned, when the lymph nodes impinge on the recurrent laryngeal nerve, hoarseness of the voice can result.
Have you had yourself reexamined by your doctor?
If there is persistence of the symptoms, you need to go back to your doctor.
Good luck and God bless you always.
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Avatar_f_tn
just a quick update.  my symptoms are all still there but got a few new ones now,  regular headaches a little breathless occasional sharp pain here and there mainly upper left abdomen and lower right abdomen,  its the tiredness that is getting to me, doing just normal things leave me exhausted.  i am waiting for an appointment back to the ent department (dont you just love waiting list?lol) anyway i developed a rash like blood blisters but mine are flat not ithcy or causing any trouble,   i waited a few days to see if they would go away but just got new ones so i went to drs and they said it was petechia (not sure of spelling)  dr run some blood for platelets and cell counts,  all cam back ok according to dr didn't tell me exact levels,  but said to take ferrous sulphate as my haemoglobin is 10.5.    doubt all my problems are down to anaemia but fingers crossed.  my dr just doesn't seem to understand my concerns and i am really thinking of going to see another dr privately.  will keep updating with anything new or when i see ent (eventually)
Geebop
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Avatar_f_tn
Ok- keep me posted too-I'm a 32 yr old female with some similar symptoms....some gi issues (prev. thought was endo returning.....maybe not)....now have ~4-5 nodules/lumps all in trunk area (lower back, hips)--had my CT Wednesday as one dr wanted to rule out lymphoma, and I'm meeting with a surgeon tomorrow am.  I'm tired, occ. achy, and lately (ok-maybe due to the stress of all this) have little appetite and also eat usually 1 meal a day.  My lumps are def. hard and painful.  There is also some swelling at base of spine.  CT showed cloudy areas in tissue.  

I'll take any advice......and wish you luck in finding some answers too.  I hope my dr tomorrow is a mix between a psychic and a savant:)  !!
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Avatar_m_tn
My friend is having the same exact symptoms as you and is getting blown off due to no insurance. I don't know if she has developed the red splotches yet. But she also has been going through this for 2 years now. About a year ago they did blood tests for thyroid, but it came back fine. She has a lump the size of a corncob on her inner thigh, one on her wrist, arm, neck. Cat scan showed black spot on thyroid, doc told her it was cysts. Do not hesitate, get another biopsy and the full blood work. Let us know what you find out. My friend is trying to get help from the state, but they wouldn't help her 2 years ago. I just went to The American Cancer Society to see if they can help her get these tests done.
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Avatar_m_tn
can you help me? I noticed you stopped posting on MEDHELP.ORG.
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534785_tn?1329595808
I have a lump on my right wrist and lumps on both of my inner thighs. My GP told me the bumps on my inner thighs were "just fat" and that many women think that the lumpiness means "swollen lymph nodes", but that my lumps were not close enough to be my groin lymph nodes. I tried to disagree with her but she didn't want to discuss it further.

Another GP looked at the lump on my wrist over the summer and told me it was probably from typing on a laptop or at a computer too much, but I don't have it on my left wrist, oddly enough. This lump has actually gotten bigger since then, but I haven't mentioned it to another doctor.

I hope your friend has better luck than I did. Please let me know if she finds anything out.
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Avatar_m_tn
Her actual lymphnodes in her neck are swollen and are showing black spots in the scan also. I contacted the Cancer Society of America. They said she should have a biopsy. she has the sweats, and extreme fatigue. I also did some research and told her to have them check for Cat Scratch Disease which seems to carry all of the same symptoms for severity and she has immunity problems from past illnesses. She is around cats, was bitten severely by a cat almost a year ago and did not follow up on proper healing check ups. I read that the infection in the "glands" could cause the lumps. The lumps started being apparent about a couple of months after she was bitten. Doc's don't think to check for this.
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