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primary lateral sclerosis?

PostPosted: June 4th, 2016, 9:52 pm
by Tb12
hi there,

hope all is well! just looking for some information and or reassurance i guess..

i have been suffering with symptoms that mimic in one way or another BFS, CFS, Kennedys disease, possible MND for 5 years now and have seen a range of neurologist and a few neuro muscular specialists..

last year one of the neurologist sent me for the kennedy blood test as it was highly suspected but the test came back borderline which is a good sign, i misunderstood and thought that was finally my answer to these crazy times i have been having but it wasn't which I'm also happy it wasn't..

i had yet another clean emg and clinical exam last year which was great despite my ongoing and ever changing, worsening symptoms over the past 5 years..

one thing i had never heard about was primary lateral sclerosis which has now triggered my anxiety and i heard you can't find it on emg? and its slow progressing?

does anyone know if it would have shown over four to five years of symptoms? would a neuro have picked up signs? how is it diagnosed?

any information would be great, just after i had been cleared of what i thought were all the nasties ...there seems to be another i have not heard of?

hope to hear from you

trent.

Re: primary lateral sclerosis?

PostPosted: June 5th, 2016, 10:03 am
by leroyb
You can remain undiagnosed with PLS for a long long time and it is possible to never have a suspect EMG with it.

It can also be extremely slow progressing but if you have no loss of function after 5 years I doubt it is PLS.

Re: primary lateral sclerosis?

PostPosted: June 5th, 2016, 11:20 pm
by Tb12
Thank you for the reply.

Would the fact that on my clinical exam the neuro didn't find any signs of UMN damage? Be a good sign? Also is spasticity easy to see and find on a clinical exam?

As I have tightness and stiffness that's painful in most my body but no neuro has ever said I see spasticity on exam..

Re: primary lateral sclerosis?

PostPosted: June 6th, 2016, 11:04 am
by d75
Tb12 wrote:Thank you for the reply.

Would the fact that on my clinical exam the neuro didn't find any signs of UMN damage? Be a good sign? Also is spasticity easy to see and find on a clinical exam?

As I have tightness and stiffness that's painful in most my body but no neuro has ever said I see spasticity on exam..



Spasticity isn't defined by a feeling of stiffness but increased muscle tone which a doctor would spot. UMN damage also comes with characteristic reflex changes - hyperreflexes - which a decent doctor would also notice!

Re: primary lateral sclerosis?

PostPosted: June 8th, 2016, 4:52 am
by TwitchyDoc
Had no time to read the whole thread, but a few points:

PLS in general does not include fasciculations, it is a disease of lateral columns (hence PLS), e.g. upper motor neurons. But I do know some people exhibit mild fasciculations with PLS (and also there are emerging shifts in view that fasciculations are LMN signs).

PLS signs are those of upper motor neuron involvement - increased muscle tone, spasticity, stiffness, hyperreflexia, diminished or extinct superficial reflexes and so on - it would be quite obvious during the exam.