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after 13 years of fatigue complaints that have been associated with the 4 cancers I had from 2007-2011, I have been prescribed methotrexate to go with hydrochloroquine. It is the 4th week today. I think I feel better on day 2 and 3 after the dose. By the next dose, I'm back in bed. I get up for an hour or 3, get stuff done or spend an hour doing makeup etc because the last thing to go will certainly be whether or not how I look to myself in the mirror says I'm sick. I've read about paraneoplastic syndrome and that seems to look like what might be happening here. This is for data. I get empathy from an amazing family and friends. Have you learned of this paraneoplastic syndrome (peripheral neuropathy) and MCTD or lupus. What outcome regarding ocular melanoma and autoimmune disorders? I was a "zebra" with OM 3 times, but this PNS is also a zebra. It's frustrating for those unlikely diagnoses to be left out, even if these are unlikely. For me, idiopathic leaves me to myself to think it's just something that can't be helped and to go away and quit giving providers difficult things to do. Is this common in autoimmune diseases or is it indigenous to a few who also have mental illness?
Thanks so much for sharing a bit of your journey.
You certainly have been through quite a bit.
From what I understand, paraneoplastic syndrome has to do with a tumor and the body's immune response to that tumor. As cancer-fighting antibodies mistakenly attack normal cells. This may be a question/concern you may want to discuss with your healthcare provider or oncologist.
When you mention peripheral neuropathy, it is important to note that Lupus can cause problems with one's nervous system. It can cause damage to nerves that tell your brain what your body feels. These nerves make up the peripheral nervous system. So damage to this system is called peripheral neuropathy. Symptoms of peripheral neuropathy may include numbness, tingling sensations, and allodynia.
Perhaps others will chime in here with their own personal experiences, however it's best to bring any new or changing symptoms (and concerns) to your healthcare provider's attention.
My best, Doreen (Team Member)
