Whats the difference ?

[T-rex]

I have been diagnosed with PLS but much is discussed about ALS
Am I better off with PLS than ALS
What is the main difference and is there a possibility that PLS will develop into ALS in time ?

 

[olly]

hello t-rex,welcome to the forum.

putting it in basic terms.
firstly,pls is upper motor neuron disease and not considered terminal.
were as als is upper + lower motor neuron disease and prognosis is considered 1-5yrs but many do live longer now with better care.
pls is only considered as a definate diagnosed after 3-5yrs when no lmn signs develop.
here is a great fact sheet.
Motor Neuron Diseases Fact Sheet: National Institute of Neurological Disorders and Stroke (NINDS)

you will find lots of help and support here.........were a great bunch lol.
theres a few of us brits here as well.
any questions feel free to ask.
take care,caroline

 

[johnnyliverpool]

how do t-rex.........am a brit and i wonna know how you got a diagnosed of pls wen the brit neuros dont tend to lean that way..............dont mis understan me, its thursday night and av ad a few lagers down boozer so dont take me literal....................anyway your symptoms are umn.......am talking through me rear...nice to meet you la...am off to bed...............av a good un!...johnnymindnotworkingtowellbutwillavagoodkiptonight......

 

[Alyoop]

Welcome to us Lovely bunch!
As Olly said its not considered Terminal, although the average Life expectancy is 20 years. And yes it can become ALS and commonly does, sometimes after many years, so thats good (i suppose)
Glad to meet you
Aly

 

[T-rex]

Thanks for the replies. Most helpful. Another 10-15 years will do me fine providing my quality of life is maintained to some degree. (Inability to use the computer would be a disaster !)
Its interesting looking back. Although just diagnosed I now see that the symptoms have been creeping up on me for several years. I sailed a lot until last year but now I still feel as though I am standing on the foredeck in a force 9.
At the age of 74 I expected to sieze up sometime soon but PLS was never considered a possibility...but thats life.

 

[olly]

lol t-rex,at 74 you would expect to have some stiffness.

as johnny was saying alot of neuro's dont go along with pls here in the uk.
my neuro new it was umn disease but not hsp............but i had an argument with a neuro who does the mnd clinic as he did not go along with a pls diagnosed unless it showed mri evidence.
in mnd's theres rarely mri evidence and i sent him many emails from pls'ers plus a report from an american neuro who has a few pls patients all saying mri's are normal................lets say he was not best pleased in being told he was wrong,personally i think he is one of these neuros who do not believe in a pls diagnosed.
my neuro has followed my progression from the start (1999)he is old school and a very experienced proffessor.

 

[T-rex]

Thanks for comment Olly. I first went NHS. Got MRI and all the rest. Found minor benign lump in brain but in wrong area to have any affect on Motor Cortex. Consultant said "Dont know what your problem is, come back in a year" Having been in pathology all my life this was not a good idea so I was fortunate to come across a local Nobel winning neurologist who agreed to see me privately. Studied all scan results (That I had bought from the NHS) and came up with PLS. Still awaiting EMG test on NHS but looking at the pathological side I dont expect the results to be any different.

 

[olly]

why is it here in the uk we have to pay to see our medical records or buy test results?...........it must be something to do with the nhs itself as people i know who go private automatically get to keep theres.
is the nhs so tight with money they can not spare a bit of paper?
i asked my gp if i could see my medical records (pay i think it was £10-£20 at the time)but he said the fee would only cover one area requested and the doctors have the right to keep back any info that may be damaging to the patient..........AAAAAHHHHH.
even though medical records are private information (private to the patient not just nhs)the nhs "own" them as there pivate property.
maybe there should be a goverment shake up regarding this.

 

[Alyoop]

Go Olly!
Takes guts to stand up to your neurologist, good on you.
That stuff about paying for your notes is terrible, especially if they can still hold stuff back. Would make it hard to ever prove any medical misconduct. We can just get them by putting in a request in writing. My private notes are in the consulting room where I work, so I would just get in early and photo copy stuff before the staff arrived, naughty. Here you always get sent your clinic letter from private or the hospital, so you know exactly what the Dr wrote.

My symptoms sterted a couple of years before any weakness, Used to get cramp all the time, and I mean masses aday. They have stopped now thank goodness, Had a whole year without any, Seemed that as the weakness got worse the muscles gave up cramping.

Best of luck evertyone