A Sarcoidosis story

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In early 2015 I developed a golf ball sized lump on my jaw and after several gp visits I was referred for an ultrasound scan. The radiologist believed I had Sjögren's syndrome although not typical. 

My gp then referred me on to a rheumatologist who from blood results did not think I had Sjögren's so ordered a chest X-ray, an MRI and more blood tests. Unbeknown to me he believed I had lymphoma. 

My mri was scheduled within a few days and I still had no major concerns (stupidly).

within 24 hours of my MRI I received a call from the rheumatologist insisting I got to my gp immediately. I obviously did so and was told that I had lymphoma and a large tumour had incidentally been discovered inside my spinal cord. The tumour was deemed to be one of 3 things, all sinister as he put it.

After several more scans and referral to a neurosurgeon a watch and wait approach was taken.

The lymphoma and lumps and bumps had been shelved for a couple of months by this stage. So after more consideration sarcoidosis was finally mentioned. I underwent an EBUS procedure and received a conclusive diagnosis of sarcoidosis and the chance of the tumour being neuro sarc was decided against. 

So, two years on I still have the spinal cord tumour, I have also had discovered a chiari malformation (possible syringomyielia), had carpel tunnel surgery (after a brief meeting with a neurologist) and have sarcoidosis for which I receive no treatment (for any of it). 

I truly believe I'm one of the lucky ones so far as despite all this the only real symptoms I have are a left side weakness and extreme joint pain in mainly my hands and feet. Still have granulomas come and go constantly in my lymph nodes and lungs but no major problems with them. Looking back I may have had many flares relating to this over the last 15-20 years but it's not massively affected my life. 

A very long story I know but all this was squeezed into a few weeks really and ultimately I'm lucky enough to just carry on as I did before, just a little bit slower now.