I went in for a wellness check last Thursday and the FNP examined what I thought was a lipoma (I have a history of lipomas) near my tailbone. She checked a couple of other of what I thought were lipomas. She didn't say much, just made a surgical referral to remove the lesion and ordered labs. When I read the clinic summary report, I saw that the referral was for suspected multiple NHL. The labs included a CBC-d, which I recognized as a CBC with differential. At first, I thought it was a coding error and that lipoma and lymphoma must have been next to each other on the charting application. That denial quickly faded after I looked at a map of the lymph system and compared my "lipomas" to it. Labs came back with elevated monocytes. More research has led me to palpate my spleen, which my untrained hands say is enlarged. FNP briefly palpated my spleen and liver, but just asked about pain. So monocytosis with (possibly) enlarged spleen. More research led me to check the epitrochlear lymph nodes on both side, both are palpable and firm. Yesteday morning, my GF thought she spotted a tick on my back. It looked a lot like a melanoma, but is very small so I think it may be something benign.
I have a history of fibromyalgia with polyarthritis. The rheumatologist said he could clinically identify it as rheumatoid arthritis, but convinced me that I didn't want that specificity on my chart. He tried treating with methotrexate, but I did not tolerate it well. I saw some evidence in my research that RA w/ methotrexate is a risk factor for NHL. I stopped treatment roughly a decade ago after getting the feeling he was pushing pills on me. I learned ways to manage pain in my life and moved on. As I told the FPN in a secure message: pain scales are meaningless to me. I use descriptors such as "burning", "stabbing", "throbbing", "electrical", "nauseating", or "constant".
I'm untreated ADHD (age 50), so to keep myself in check I do what I've always done to keep my untreated ADHD in check - learn. I've chased brain elasticity down a bunch of rabbit holes trying to learn as much as I can about the differential workup I'm just starting. Most were circuitous or dead-ends. I've calculated some CBC ratios like LMR. Some seem actually pretty good as I understand what I've learned so far, but it's not for me to decipher.
I'm working hard to avoid letting my overactive imagination get too far ahead of me - and I am absolutely NOT diagnosing myself. I'm just trying to learn as much as I can about what the professionals on my case are thinking/looking for. The lymphatic symptoms far predate the melanoma-looking lesion on my skin (we live in the heart of tick country and I've had Rocky Mountain Spotted Fever - so tick/mole checks are and have been a regular thing - this new skin lesion is very small and very new. My symptoms could be advanced late-stage melanoma, could be some form of NHL (as suspected by the FNP), could be some parasitic, fungal, or bacterial infection. It could even be a flair of the not-charted, but suspected RA.
I have specific questions, which I'll save for a copy of this post in the Diagnosis and Treatment forum, but here I'm just looking for anyone who may have had a similar experience of polyarthritis/fibromyalgia/lipomas and dismissing pain symptoms prior to diagnosis.
Hi NothingLeftButSmiles and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your concerns.
I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of CTCL - T-Cell Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 when a second rare type of aggressive PTCL - T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
So sorry to read about the challenges you are having…… often as not the road to getting a clear diagnosis regardless what is wrong with us can be long, complicated and indeed stressful.
We are not medically trained in any way…… so we only have our first hand experience to look back on.
Your post in the Diagnosis and Treatment forum was flagged as a duplicate but I have asked the community team to fix this…. that won’t be done until tomorrow.
The Diagnosis of Lymphoma and Symptoms can be ever so different.
But with over 60 types and sub-types of Lymphoma the road to diagnosis can be ever so complicated as Lymphoma can be mistaken as other health conditions……
I only presented with a rash on my back and no other symptoms. My great GP tried every tool available then put me to a very respected Dermatologist.
He was 99% sure as to what I had but it took a full year and 5 biopsies to get the pathology to tell the truth.
About 7 in a million in the UK are diagnosed with my first type of T-Cell NHL every year!!!!!!!…… but although I have been on my journey for over 25 years I turned 68 last Nov and I am living a great life.
Happy to help out as best as I can.
In my type of rare skin NHL - CTCL specifically known as Mycosis Fungoides can develop discoloured skin patches…… but it’s so important to remember that having any health condition…… or multiple conditions can have a significant effect on the skin as the skin is one of the most reactive organs in the body.
