am a wuss..now i know it......

[johnnyliverpool]

how do! i"m johnnyliverpool from little old England....from liverpool actually...were the beatles were also born and bread. google led me to these boards and i£ve been around a bit reading all your stories........they make me feel humble i have to say. I"m not too good on computer, i"m not to sure even, where this post is gonna end up, i"ll soldier on tho!.............i would most appreciate your opinions on my story.even Wrighty"s and he says it as it is..and he"s a bit scary is he not?........................i"ve been under the neuro"s for the last 6yrs and have recently been told to push off cos they don"t know whats causing my symptoms and to come back when things are worse. Fair enough?....as a goingaway present they said, "you have"nt got multiple sclerosis..no tumours no cancers..your cervical myelopathy is doing nothing ...but we think its something in the spine...maybe..........thinkig about all this over a cup of tea aand a fag i realised they never said no mnd....cor blimey, why not!?...........this is were i need your help..to put some perspective on my thinking.................You see , i have the upper motor neoron syndrome. which as you all know is hyperreflexia,spasticity.clonusand babiski sign amonst some others...i walk like a duck, left side weakness.stiff as the proverbal board and constant pain. i won"t go on. i don"t want you to fall asleep..One neoro said to me ,"call it what you like , pls als ms. i"m calling it degenerative disc desease so here , take a pain management course."at the time i never had a clue what he was talking about......well i always thought i was a tough egg!..but now i"m thinking am a wuz, really. anyway, good to infroduce myself.god bless to you all and i look forwaed to your observations...John.

 

[brooksea]

Welcome, johnnyliverpool! Wright is a lamb really!

Haven't heard cor blimey in a long time!

Maybe Joel can move this to the "Do I Have ALS" forum.

 

[olly]

hey john,welcome to the forum.
you have all the exact symptoms ect as i do even the waddle and left sided weakness...............i have pls.
my honest opinion..........they are fobbing you off,if it was your spine it would have showed up in an mri.
over here in the uk they class all forms of mnd together,very few neuro's will give a diagnosed of pls even if they think it is.
they will most likely call it umn dysfunction or hsp.
i had to wait 7yrs and kick up a stink to get a diagnosed.
there is no test for pls and it is only diagnosed on clinical findings after many years of symptoms..........but as different neuro's can have conflicting findings you need to stick with just one.
my neuro who i have now been with for 10yrs diagnosed pls but when i went to the mnd clinic he said he could not give that diagnosed.......why?............because mri was normal?.
this man is not a mnd neuro and to say that was totally stupid.
i sent him a letter with emails from pls patients all saying they had normal mri's plus a email from a neuro with many pls patients stating it does not show on a mri............lets just say he was not happy in his returning letter.

you clearly have problems and they are there to provide a service and help..............if they dont,make lots of noise.

 

[johnnyliverpool]

olly, your a star......funny, well not funny...i thought of pls..i even jump around at loud noises and surprises....i dont have bulbar symptoms, just clonus in my chin....facinated that our neuro"s dont diagnosed mnd easly......i suppose cos there is no cure why should they guess...which makes me think i should leave it there...but then again the neuro"s ambiguaty by not saying no mnd has got me bothered for some strange reason cos if they had given me a harsh diagnosed i know i could take it.i think....anyway olly , chuck an odd symptom at me now and then. that would be interesting......and thanks so much for replying........take care....john.

 

[wright]

I am definitely a lamb, Johnny. It's the occasional lion that rears its ugly head from time to time.

The symptoms you mention are definitely upper motor neuron symptoms that can certainly be attributed to a spinal problem, as could be caused by degenerative discs (as your doc has indicated) impinging the spine. You also mention cervical myelopathy (which could also cause your symptoms) but then I'm not sure if the docs dismissed it or if they feel it is the degenerative discs that are causing your cervical myelopathy or if your cervical myelopathy is another problem on top of your degenerative disc problem.

Is there any way you can give us more information.

Good advice from Olly: Make noise and fight for more answers.

 

[johnnyliverpool]

wrighty, a knew u was a lamb really..i feel quite chuffed u replied to my post....well..the cervical myelopathy was discounted sometime ago and so to was the ddd. i have a small disc problem at the lower end of my spine , again discounted...confused? apparently my spine is in good condition for my age...even more confused. wrighty, the the upper motor neuron syndrome ive never mentioned to anyone. not even my wife....... i have all the symtoms i suppose and ur right of course there are many causes of umn syndrome. after 6 yrs of neyros and tests, with various things put in places i never new i had and all the tests, what happend to the diagnosis by exclusion? except they never excluded mnd as a cause of my symptoms. well there u r, i could go on, but i won"t.....as the saying goes "its good to talk" and it has. especially to the number one guy...i"d like to feel free to ask u a question any time i feel the need .if thats alright with you......have a good un! john.

 

[wright]

Johhny, you seem like a really cool dude . . . and I'd be more than happy to answer any questions you pose to me. 'Till we meet again on here . . . take care of yourself.

 

[ktmj]

I had to look up "chuffed" Johnny. You English folks have some pretty cool words even though y'all don't speak Appalachian American.:razz:

 

[johnnyliverpool]

i say , old bean...at a guess appalachian is apache lingo, yes?..redneck state, thats indian too...yep?...talking through my rear ar"nt i.......never mind , nice to make your aquintance...give us the gen.........ta ta for now, pip pip...john.

 

[hjkangel]

Jolly good to hear from u Johnny! My Mom was born and raised in Glouster, England. Ur lingo made me chuckle. However, I am sorry for ur troubles. My Dad has very agressive extremity onset of ALS. Welcome to the forum. Folks are great around here. Good luck w/ workin thru the medical community. It can be difficult indeed, at times.

 

[Northern Dancer]

Johnny,

Do you use a 'button box?' Do you have a pan on the 'cooker?' Is anything 'mankey' where you are? Do you eat 'ice lollies or popsicles?' Crisps' or chips?

I have to stop this rabbiting on.

ND

 

[JeffP]

wishing you the best johnny .have you thought about getting another opinion from a professional that cares .it sounds kike you were just tossed around and left with uncertainty not good .you take care of you and find a good doctor that will be more open to you godbless

 

[olly]

hi john,how you doing my old mucker.
some doctors are muffins and pilchards who piffle about and need a verbal pasting.
you have had a few muffins and pilchards over the last several years,now you need to find a bobby dazzler.
its bang out of order and totally barry white that they wont diagnosed you.

i think your the cats whiskers
catch you laters,best of british


for transulation please see following link:lol:
A dictionary of slang - "C" - Slang and colloquialisms of the UK.

 

[ktmj]

Nah, Appalachian American is hillbilly talk. We say things like battry (battery), light bub (bulb), over thar (there), over yonder (there), and in the holler (hollow or valley).:shock:

Best wishes to ya mate. Oops, that's Aussie ain't it?

 

[johnnyliverpool]

hey some great people here...and still able to have a laugh...loved the replies..my respect!.............olly is a liverpoolian like myself and i can tell you that niether of us talk "posh"..in fact were so down to earth we talk...like dat, ya knom what a mean like?...we do , do, dat don"t we do. eh Ollie?....loves, john.