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I'll keep it short. I was diagnosed with PCNSL in April 2015 and now 11 years later and up to this point (5/3/26) have been progression free. Treatment was the chemo only option of high dose Methotrexate and other drugs. Tumor looks like it just melted away on the MRIs in just a few months in 2015. I am so grateful that I have been progression free this whole time and frankly I don't deserve the good fortune, but I'll take it ! So there is hope !!! Internet says you are never out of the woods with this disease so yearly MRI's essential. For me the whole thing started with blurry/cloudy vision in my right eye. A vitrectomy removed the fluid from right eye with which they found out what kind of tumor I had. I went through several eye doctors before until I was sent to a high-end specialist. He found it when he said lets just do an MRI on your head just to eliminate unlikely possibilities !!! By that time I was having rapid cognitive decline although only 8 weeks earlier I was fine cognitively. Urgency is key here. I have a family history of autoimmune diseases and I got Crohn's disease around 2000 and immunosuppressants did not work and I had my entire colon and rectum removed 2007. I strongly suspect the immunosuppressants I took for the Crohn's disease may have brought on the PCNSL.

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Replies to "I'll keep it short. I was diagnosed with PCNSL in April 2015 and now 11 years..."

@noelnemeth Welcome to Connect! What an encouraging story about your PCNSL ( Primary Central Nervous System Lymphoma or CNS). Messages such as this can give an enormous sense of hope to others with CNS. So thank you for sharing with us.

Did you have to undergo any physical therapy to help reverse any muscle decline you had?