Diagnosed with Benign MND

[notme]

RA is a totally diff. thing....affecting joints, has nothing to do with nerves or muscles, and the symptoms are very, very different. It's a little hard for any MD to remotely confuse the two.

 

[Luke]

SMA is actually what Stephen Hawking has too (though they didn't know it back when he was diagnosed originally), it is why he has lived so long. The chief difference early on is the lack of UMN symptoms - hyperreflexia, spasticity, etc. That becomes more complicated if someone has BFS and SMA, though, because the BFS can cause hyper reflexes. So in that case you'd have to wait and see how it goes, which is where Ian is at however you cut it.

That's news to me. Where did you read this? I'd be interested in an article, as everything I've heard / read says he has ALS, albeit an extraordinary case.

 

[Tokahfang]

I was had read it in the past, and was quoting from memory. Having tried to find out where in answer to your question, I find that it's apparently still under debate. As of January, it seems the neurologist that favor ALS over SMA were winning.

"Some neurologists have questioned his diagnosis, suggesting he may have adult onset spinal muscular atrophy, a disorder similar to MND but which has a much better prognosis and potential for a normal life expectancy. Most experts however believe his symptoms match classic amyotrophic lateral sclerosis (ALS), the commonest form of MND."

Given how long he has lived, I'm sure he will undergo autopsy after his death, so they will see how his UMNs look. (It is the only way to to truly know with them.) In SMA they should only be slightly damaged, so that will be when surety can be reached.

I apologize for my off the cuff answer though, Wherever I read about it first made it sound like a done deal.

 

[olly]

Luke,here in the uk they tend to lump all types of mnd together..........not als/pls ect but motor neuron desease.
Stephen hawkings is diagnosed as having mnd in the uk,be it als or sma as bekie states no one knows even with ourselves untill autopsy.
some with pls/pma/sma diagnosis during life have been found during autopsy to have significant umn's or lms's to change the diagnosis to als.
What ever type of mnd someone has is not the focus,its all down to progression.

 

[prattstar]

Olly

You are right about MND being the overarching diagnosis. I don't have a sub category and that doesn't seem to be a priority, so I found it very confusing when I first posted here as I didn't know that MND has different names in different countries.

All I know is that I have an atypical form of MND in that it is a slow progressing form.

It took 2 years of cramping, 1 year of twitching, countless blood tests, 3 EMGs and a highly respected neuro to get to this point.

Ian