I have had slight downbeating nystagmus and ataxia for the past 18 months. The neurologist believes this is a 'remote effect of cancer', i.e. a paraneoplastic syndrome. My brain MRI was clean showing no (evident) cerebellar damage.
What is the likelihood that I will develop small cell carcinoma of lymphoma, which are the two primary cancers which produce these paraneoplastic effects? What tests are effective in giving me a greater degree of certainty whether I will develop these cancers in the future? Neurologists have been somewhat cagey about stating whether I have cancer, when the literature suggests that these early remote effects tend to suggest it.
I would really like to know what my chances are based upon these early symptoms. If a neurologist truly believes there is cancer somewhere in my body, I would like some substantiation of that.
Is there anyone out there that has had these particular symptoms and/or experiences?
First of all I'm sorry to hear that you are experiencing all these things. I suggest you get a second opinion from another neurologist. This is really a chicken and egg question of which came first. If you have small cell cancer or lymphoma, then the additional finding of ataxia and nystagmus maybe called a paraneoplastic syndrome (this is rather a rare paraneoplastic syndrome). However, if you are initially diagnosed with ataxia and nystagmus, the chance of this being due to cancer is very low and there are lots of conditions that should be thought of first than cancer (like stroke, vertebrovascular insufficiency, etc.).
I suggest you arrange consult with another neurologist and discuss the things that I have mentioned.
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