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Thanks Aly and Johnny. I think I've decided to go back and ask for the EMG tests now as I've developed a twitch in my side that is driving 5 me insane!

Johnny, you are very right about the NHS in the UK. My neuro barely looks at me when he speaks and I feel lucky to get 5 minutes of his time since I'm not a private patient. They told me they would send me for physiotherapy to make sure my muscles were stretched and mobile but 6 months later I'm still waiting for the referral.

I refuse to be forced into going private as I feel the same as you - we pay masses in tax and national insurance contributions to support the health service so think it is unfair that you can jump the queue if you can afford to pay again.
 
Hi,

Just thought I would give a quick update as I think I have realised where I go from here, all thanks to the Occupational Health doctor I was sent to by work.

He was a lovely doctor and I got a half hour consultation with him (not the usual 5 mins you get on the NHS). He took my medical history, asked me how I managed my condition and how I felt about the future (specifically about how a felt about having been told I have upper motor neurone death and not being given a long term prognosis).

It was the first time anyone had actually asked me about how I felt about not knowing what the future holds...and it made me realise that the future doesn't really matter :lol:

Even if my prognosis was to be poor, there is absolutely nothing I can do about it, so its a waste of time worrying. I need to spend my time enjoying the present. :D

I've therefore decided not to go back to my neuro until my next check up in February.

The OH doctor also told me that in the UK it is rare for a younger person to be given a diagnosis of an untreatable / incurable condition unless the diagnosis is needed to obtain drug treatment or some other care. He said being told the bad news can sometimes make a younger person make (in his words) 'a rash decision' and so he agreed with my neuros decision to stop all testing now. You learn something every day!
 
glad you have come to a positive conclusion. Live life to the fullest now as that is all you have at this moment in time. The future will work itself out to what it will be and you will have lived a full life already when you get there!
 
23 of us, family and friends spend Christmas in the Mayan Riviera in Mexico. I was undiagnosed and unsuspecting of the PLS diagnosis to come. One of our group was a healthy 41 year male with his new girlfriend. They were both so photogenic and bubbly that a lot of my photos were of them. Early April this year, he went to bed and died in his sleep of a brain aneurysm. How precious that last holiday together was. He lived about 5 hours away from his nephews ( my grandsons ) so it was a wonderful experience for them to spend so much time with him his last year on earth.

Making everyday as special as we can is all we can do. There are no guarantees.

Northern Dancer
 
Becky, I don't understand the mindset of your neurologist. Okay, so he believes beyond reasonable doubt that you have PLS and according to what you've written, as of this moment, you do not require medication (specifically, baclofen).

At least you have a very good idea now as to the label for your troubles.

PLS can be a very slow progressing disease, sometimes taking decades to spread through various regions of the body. For me, knowing what it is that is causing me difficulties lessens the stress factor. The added stress of not knowing can cause increased anxiety which, in turn, can exacerbate symptoms (speaking from personal experience and not quoting medical text).

Knowing this is something that usually progresses slowly should be of some benefit. I'm glad you have no need of medication for symptoms at present. I hope this remains so for a long time to come.
 
becks, zaph has a point, it would be nice to have a label..then you can get on with things..i"ve settled for my diagnosed of upper motor neuron syndrome, which can be caused my quite a few things. according to my last neuro..not by ms, cancer or tumor...but by something in the spine, they know not what...if he had said no mnd i would not be here on these boards......but the swine did"nt and i never asked cos i was on my way home when i thought of it...so just get on with it? well yes..but i still want that label and after six years and all those tests and exclusions they cant give me one leaves me cold.........a label that can be fixed easily of course.....would be sensational......ah well...jonnydiagnosedless
 
Gosh. I read these posts and am amazed at how similar everyones experiences are. Here we are writing from all over the world and yet we are like one big family. I think Upper motor neurone syndrome is an extremely good title. Says it all really. If it has slowly progressed over years, then chances are that it will continue like that. Chances are that it also will not get better.

Hubby has said that any Fasciculations are indeed a LMN sign. If you have them then you do not by definition have PLS! So many of us have a primarily UMN syndrome.
Regardless of it name, we must live each day to the full. One of the Dads at my sons scholl died 2 days ago of a bee sting, leaving 2 young children.

If you have a UMN syndrome stop worrying about exactly what it is called and live as much as you can. The neurologists struggle with these bunch of symptoms as much as we all do.

Cheers ya'all Aly
 
we had a discussion about a year or two ago about all this.
most agreed there could be many variations of mnd.
you have hsp that mainly effects the lower body but some do have mild upper body symptoms,then theres complicated types of hsp.
you have pls that gradually effect whole body but some show slight lmn symptoms that dont progress too much so does not justify diagnosed of als.
then you have umn dominant als,very very slow progressive als were people are functional for years.

in autopsy studies they have found those diagnosed with pls do show signs of lmn involvement that was never fully expressed during life,but may have if the person lived longer.
also in pma on autopsy umn's have shown signs of disease.
because of this it is wondered if pls and pma maybe a variation of als.
in als and pls on autopsy other areas have been seen to show signs of desease .

as for fassics,that depends on whats causing them.
theres fassics due to lmn disease but they can be caused by other things.
in ms you get fassics due to nerve irritation,i think this could be the type also seen in pls.

my neuro told me untill autopsy they can not 100% give a diagnosed ,maybe 99% at most.
with mnd's if we have at least some idea of whats going on and just concentrate on progression thats as good as it gets.
i do have info on the mentioned studies saved if anyone wants to read for themselves.

take care my friends.
caroline
 
great articles Olly. Thanks for the links.
 
so olly, the story is...the more you know, the less you understand!.........pls may not even exist!....no wonder its so rare!..........or the docs dont diagnosed it!...its about time they invented something that can see inside the spine and brain in 3d..............i would really like to know before the autopsy so i can say..well bloody hell who would of thought it was that!..........johnnyrollontheautopsynot!.. by the way , had my 3rd grandchild this week..after two boys, a little girl,,,named chloe...suppose i will be taking her to ballett classes instead of soccer..........
 
For me it is a waste of energy to chase an illusive diagnosis. Spending my days counting fasciculations in each part of my body and measuring my thumbs is a waste of whatever time I may have left. A diagnosis ,for me, is simply labeling a set of symptoms which may or may not be exactly the same as a fellow PLSer has.

My dentist told me 10 years ago that I had a tongue tremor. So what? I saved myself 10 years of research anguish by not consulting the internet. I don't want to take a crash neurology course. My neurologist has spent a lifetime doing that. Do I have to be able to read music and sing to go to the opera?

Regardless of the waves or impulses on a graph I am what I am and what will be will be.


ND
 
dancer...its interesting though init?..till as get bored a suppose........loves johnnyjokingneuro......
 
Johnny,

Why aren't you badgering the badgers? Oops, they were hedge hogs, weren't they?

Twitchy Dancer
 
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