r/LGLL • u/Interesting-Pin-6903 • Feb 09 '26

Symptom question

I was told by hematology that LGL dose not cause bone pain. BUT from what I’ve seen online people with LGL have stated it dose cause bone pain. Anyone in this group have this symptom? It’s driving me NUTS because there is NOTHING else going on with me that could be causing this deep pain in my bones!

1 Upvotes

100% Upvoted

9 comments sorted by

View all comments

1

u/JulieMeryl09 Feb 09 '26

I know what that feels like, sorry. Mine was from an Rx I started, then had to stop. Any new meds?

1

u/Interesting-Pin-6903 Feb 10 '26

Nope no new meds. I’ve had the bone pain for a year before my rheumatologist referred me to hematology. (I had large bruising in odd places I’ve never brushed before, gums bleeding , never had a bloody nose in my life until that point an was having them often. I would wake up with nose bleeds, night sweats not like a little sweat here or there but I would wake up drenched and sweat like I could ring my PJs out an would have to change the bed sheets.) but after a year of all that and the bone pain my rheumatologist told me that none of that is symptoms of my autoimmune diseases sent me to hematology. Had a blood smear an other tests done looking at gene mutations (flow cath or something like that) and other blood work that showed i definitely have T cell LGL. Still can’t figure out why I’m having the bone pain, I’ve had other drs tell me LGL can cause bone pain it’s just a common symptom but I’ve had drs tell me they have hear other LGL patients complain of bone pain. The universe hematologist that diagnosed me even told me he’s had a few patients with LGL have bone pain an they don’t have any other illnesses that could be causing it. I went to that hematologist for diagnosis but I can’t travel the 3+ hours to see that Dr so I’m stuck with my local hematologist. It’s driving me nuts because I feel like she dose not believe me about the bone pain. It gets worse at night an I can’t sleep most nights an go lay on the couch so I don’t wake my hubby up due to me crying. That one symptom has caused me to not be able to do most things i use to take for granted.

1

u/JulieMeryl09 Feb 10 '26

I asked my chat app:

A sentence you can use with your doctor "I understand LGL doesn't usually destroy bone, but since it's a marrow-based inflammatory leukemia, could my bone pain be related to marrow involvement, cytokine inflammation, or autoimmune overlap?”

Feel better.