You guys probably get this all the time...

[venerable]

True Nikki, thanks for the good wishes.

 

[venerable]

Its all back. Good news and not so good news.

Good - it's not MND, it's neuromyotonia.

Bad - the neuromyotonia is itself a symptom, confirmed by bloods and MRI, of prostate cancer which has spread to the bones of the spine and is compressing the cord, causing lower body symptoms. Upper body is unrelated and looks purely muscular.

Could have been worse.

 

[vickim]

Oh my goodness. What are they suggesting you do? I am praying for you.

 

[Nikki J]

I am sorry for your diagnosis. Yes good news not ALS but this is no walk in the park either. Best wishes in your fight against this new enemy.

 

[venerable]

Well, have been scheduled in to meet onco next week. Looks like its radiation for dinner with a side order of chemo though we'll see. The emphasis from neuro was "I spoke to onco and its treatable" so that's something. Bottom line, IT - all if it - has a name, has a shape, has a location and that means it can be fought.

They would never have found it if they weren't exploring the ALS option. Stumbled across it by accident because I'm in no pain or anything either ahem "down there" or in my back. Weird.

 

[vickim]

Well I am wishing you a complete recovery. It will be no walk in the park but you're a tough cookie. I hope you keep us updated on how you are doing.

 

[venerable]

Thanks vicki, I shall of course post updates and float around DIHALS and the site generally - having been on the diagnostic journey myself, I might have something to offer by way of a calming influence on worriers.

 

[Clearwater AL]

Yes, keep in touch as you travel this new journey... to complete recovery!