Sure. I Have Been Diagnosed With CANVAS By Mayo, Rochester

Sure. I have been diagnosed with CANVAS by Mayo, Rochester (11/15). My symptoms continue to get worse, especially the balance issues. I feel Mayo diagnosed me and then abandoned me. I know this disorder is relatively new (early 1990) and there are not many answers as to why nor what to do about my many symptoms. In the last 4-5 weeks my balance has deteriorated significantly along with the overall weakness. I cannot walk anywhere without my walker due both to the imbalance and weakness, especially in my legs. My legs feel like jello. They also ache and cramp as wells as continuing cramps in my hands. Today I began researching long-term use of the drug Flecanide and came upon your website. Since I live in Nevada, my doctors here know nothing about CANVAS and are groping on how to help me.

Regarding Flecanide, I used this drug for 15 years to control afib. Two years ago I read that Flecanide had a history of causing neuropathy and immediately consulted my cardiologist who was totally against my discontinuing the Flecanide but insisted. The electrophysiologist said ok and long story short ending up having a Watchman device implanted and it has been totally successful and since discontinuing the Flecanide, I haven't had a any episodes of afib.

Now back to CANVAS. I suppose the extreme discomfort I am experiencing in my legs would be contributed to the neuropathy; the burning, aching, cramping. The extreme imbalance is due to the loss is function of the vestibular nerve and the decreased size of my cerebellum. (According to Mayo, it's about half the size it should be for a woman my ago [74] and now I can't get to sleep). I keep hoping that I will find a new doctor who with a fresh look will see something missed by the neurobiologist I have recently seen here in Las Vegas. I am currently under the care of neurologists at the Cleveland Clinc, Lou Ruvo center for Brain Health.

I recently contacted Dr. Tim Hain, Northwestern University, as he has published some articles on CANVAS. He seemed to discount claims that I have CANVAS basing this opinion on CANVAS being so rare. Not much help.

I would appreciate your opinion even if it is some direction I might look to continue to gather information. Did Flecanide cause this condition? Is there anything I can do to reverse my symptoms or prevent further deterioration. Mayo sent me home with instructions to get physical therapy and get help for my depression (who wouldn't be depressed with all this going on and a complete collapse of ones lifestyle).

Thanks for your time.

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