Recent content by 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.

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...

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...

MND doesn't fluctuate. If you had it and you lost the use of a muscle, then that muscle isn't going to magically resurrect itself. The mind is a powerful thing, you've kind of grasped that yourself. Stress and worry can do MAJOR stuff to your body, without you even realising. Regarding...

True Nikki, thanks for the good wishes.

Cheers Nikki. I'm having symptoms and have ALS/MND in the family so, well, we'll see. Cheers for the response. Anyone else have any bells ringing?

That was the NCS/EMG today then. NCS seemed normal. EMG on both legs at rest was sporadic popping noises with constant thudding sound underlying it, like a slightly fast heartbeat. On movement, turned into hail on a roof which took a few seconds to stop upon returning to rest. Upper body was...

Thanks monster. Hope everything works out with you too. Any others have polyclonal or the toe thing?

EMG/NCS in a week's time. MRI a few days ago, awaiting results. In meantime, bloods have thrown up Polyclonal Gammopathy; my liver's fine though, full blood count shows no reaction to infection, been through the list and I don't have lots of what's on there for obvious reasons (I'm not female...

Nope, no cane as yet. No good ones for sale over here!

Hey vickim, I have EMG/NCS booked early in the new year so will mention bio then I think. Thanks ANDMON, although I'm aware of ranges, purpose etc, was mainly looking for values from those who hae had CK tested themselves so I can compare notes. Apologies, I should have specified this in my post.

Well, got my bloods back, all normal apart from CK of 250. Does this seem high ?

Just been back and reviewed my original post. What a difference a couple of months makes. No longer any numbness in legs, just fascs constant. Clear loss of muscle mass. Arms and hands starting to feel like how legs felt at the beginning - alternating crampy and burning pain, loss of control...

The Communist Manifesto by Marx and Engels. Plato's Republic. Thomas More's Utopia. May try Paradise Lost for fun (the rest are for work)

Thanks Dalvin, I'll def look at that option. At the moment I've switched to my left hand for little motor jobs like that. ... Whatever this is, it's progressing a little too quickly for my liking.