21, Being tested for Lymphoma, Scared to Death

[purplexbutterfly]

I recently had a 10 day stint in hospital after I became extremely unwell. Severe headache, photophobia, vomiting, had a temp of 39.8 or something stupid like that. They suspected meningitis but also queried a thrombosis in my brain so I went for a CT head and neck, came back fine except the radiologist was concerned about the size of my lymph nodes. I had an ultrasound guided lymph node biopsy taken which came back inconclusive as the sample size was too small. I also had a lumbre puncture which tested positive for protein and showed raised LDH. My bloods also showed low neutrophils, raised ESR and CRP (I think, one might have been down and the other might have been up I forgot). I understand that these are symptoms of meningitis which they think was the initial problem but after looking up what LDH was (because I didn't know and am a student nurse) it is also a symptom of some cancers which. Anyway, because the first biopsy was unsuccessful the medics referred me to the surgeons so they could take the biopsy and both the medics and consultant surgeon could feel my cervical nodes up straight away without much feeling around for them. So they referred me to ENT to take the biopsies but because they weren't bulging out like goiters they refused to take a biopsy. So instead I have to wait 3 weeks for another ultrasound on my neck with possible biopsies if lymphs are still enlarged then get the results on 23rd November. Reason for the delay is cos possibly the lymphs are extremely large because of having a beast of an infection and should go down within that time span. Also all the doctors commented about the size of my tonsils. I did have tonsillitis about 2 months ago which was treated with anti biotics but I have absolutely no pain in them at all but today I have noticed they feel funny when I swallow, like they are resisting against me swallowing. No pain at all.

I don't really have any symptoms except the raised lymph nodes in my neck. I know you get night sweats as a symptom sometimes, I don't get night sweats as such, more like periodic hot flushes. I don't know if this is relevant but I have been ill more times this year with coughs, colds, flu, tonsillitis etc than I have done in the past 5 years. I am normally fit and well with the exception of the odd bout of my bowel being lazy but nothing serious.

I don't know where I can turn to support and advice because nobody really understands, they just keep telling me to not think about it, but I can't help it. I am trying not to obsess over it but I will not lie, I am extremely frightened.

[Mochadelicious]

Wow, you have been through a lot.  Menengitis can be quite serious and I'm glad you got through it.   I was just curious if they gave you any kind of antibiotics since they now suspect infection?  I was diagnosed with lymphoma last year but before that they put me on antibiotics to see if the lump I had would go away.  After several weeks when it didn't my doctor did the biopsy.  

Some people have symptoms and others don't when diagnosed with lymphoma.  The more common symptoms are night sweats, low grade fever and significant weight loss.  Severe itching can also be a symptom.  Night sweats are usually described as waking up drenched in sweat and having to change your clothes and sheets.  This doesn't sound like what you're experiencing.

Waiting a couple of weeks probably isn't going to make much of a difference.  Please keep us posted on your progress.

[LynneMargot]

I'm sorry that you are having such a bad experience, and that you are still having worrisome symptoms.  It may be that you had a terrible infection and that your lymph nodes are still reactive.  It sounds like you are starting to feel better now, and I don't think you'd improve much if at all if it were lymphoma.  Good luck with the biopsy, which is the only way to diagnose lymphoma. Please post your diagnosis for the benefit of other readers.  I hope that you are well soon.  

[purplexbutterfly]

Oh and also, my chest x ray was clear and ultrasound of abdomen was fine which was encouraging :)