Interesting Paper on Study of PLS

Status
Not open for further replies.

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
In an effort to understand the intricacies of this odd beastly disease, I've been researching studies and happened to come across this one that I found fascinating and enlightening.

The thought occurred to me to share this find with some of you who may not have yet seen this. It was of interest to me because I cramp and twitch like a silly person. (Okay, so I am a silly person...)

http://www.orpha.net/data/patho/GB/uk-PLS.pdf
 
Last edited:

LizT

Very helpful member
Joined
Aug 8, 2010
Messages
1,517
Reason
Lost a loved one
Country
US
State
WI
Very good read. Thanks for sharing.
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,159
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
Kim, I've just read it... I saw the list of diseases/disorders to be ruled out. Maybe bringing a copy to your doctor and asking what is left to be ruled out in your case would be helpful, assuming it didn't hurt any egos.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
Ann,

My case is "Presumptive PLS" because everything else has already been ruled out. When this latest neuro first saw me and read over my record, he told me all of the tests that could be run have already been ran (well, with the exception of the lumbar puncture which has since been done). So, my guess is (but it wouldn't hurt for me to confirm by asking) that the following have been ruled out:

HSP, BFCS (benign fasciculation cramp syndrome-one neuro already said no to that), MS, ALS, PNH (peripheral nerve hyper-excitability), lupus, myelopathies, neuropathies, spondylosis, a.i.d.s, syphilis, B-12 def, thyroidism and everything else on the list.

At the end of all of my testing, the neuro wrote it down as "presumptive PLS". He's out of guesses. Hey, it's slow progressing, non-life threatening and I have cramp candy. It's been a chronic problem for 3 years now so I've gotten use to it. I have made up my mind not to let it get me down or nasty. I'll behave myself from now on.
 
Last edited:

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,159
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
Those are some wildly different problems being ruled out, Kim. OK, my question is this---Haven't you been behaving? I think you've done well. And, Happy New Year!
 

johnnyliverpool

Distinguished member
Joined
May 30, 2010
Messages
145
Reason
Learn about ALS
Country
uni
State
wales
as been said..if it neighs like a horse and goes clip clop then its a horse.or is it?....could be a zebra...a donkey,,,,,or am i talking like an ass?....or does it matter that much? i was a racehorse once......and since the neurotrainers cant make a donkey a racehorse or vice versa al settle for a pony...one of those apache indian ponies.or a shire horse. those huge and magnificent beasts that used to deliver my lager..sadly though me clips lost its clop...ah well........loves the pooler
 

Tokahfang

Senior member
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
On the other hand, an incurable progressive neurological disease by any other name still smells as stinky!
 

johnnyliverpool

Distinguished member
Joined
May 30, 2010
Messages
145
Reason
Learn about ALS
Country
uni
State
wales
further too........of course we all tend to blame any new symptom on the old motor neurons.............i had been getting probs with eye pain and tonight, just back from the boozer, i was drinking me cuppa tea when sure enough the eye prob started.....i yelled to the missus, them neurons are at it again...everytime i take a sip of my tea i get a pain in the eye.....with blazing eyes and a look of exasperation she balled. try taking the spoon out of the cup you blithering idiot!............johnnypratt......
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
Very very funny, thanks for the chuckle.

Zaphoon. I can't believe how your post sounds just like me. A long list of tests over 3 years, needles galore. Presumptive PLS, but I just don't feel it's right, but like you, what the heck. It's slow, but yes Becky it stinks.

Aly
 

arkallen

Distinguished member
Joined
Mar 8, 2009
Messages
266
Reason
Other
Diagnosis
05/2009
Country
AU
State
VIC
Hello Kim,
(I'm not sure we've been introduced by real names, so I hope you wont mind me jumping straight to a first name basis!)

I really appreciated reading that aritcle. My 'working diagnosis' (according to a couple of cautions Neurologists) is PLS. Ier've googled PLS lots of times, but never found anything as thorough as your link, and it's so helpful. I understand a bit more about the "too soon to tell what it is" comment now: I gather there is a three year criterion before it can be official. Ive also had the gamut of tests that you describe, many of them severall times.

While doctors have said that my progress is too slow for it to be ALS, it seems to me rather quick compared to the little that I have read about PLS. Ive had symptoms for about two years, but I can hardly walk a few steps now, can't really propell a manual chair, and am beginning to find speaking impossible at times. In one conversation with my own Neurologist I queried whether the presence of lower motor neurone symptoms (or is the word 'signs'?) increase the likelihood that it will eventually show up as ALS. He seemed to think that might be true. I have minor occasional fasciculations and slight atrophy in one hand.

Thanks for the information, I will be interested in anything else you know!
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
Hey Roderick. Have they mentioned UMN dominant PLS? Also I have read that PLS moves at abouyt 1/4 speed of ALS....So If ALS hits the wall at an average of 3-5 years, then that means PLS 12 -20 years. But........ There are people who of course have ALS move faster than 3-5 years ie 1-3 years if they are unfortunate, But now I am just being morose so I will shut up.

There are a really good papers called The Natural History of PLS. You could giggle it, but you may need a subscription. You could all give it ago. I think my husband saved it on my trusty computer when he was looking into it.

Aly
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
I just found it! Its really interesting. If anyone wants it I could email it as its far too long to post. Let me know. I am not a stalker and apart from being limpy,really quite ordinary, I am a New Zealander after all, not like those Aussies :)
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
Roderick,

I'm glad you found the article of interest. Thanks for letting me know.
 

DBowman

Active member
Joined
Feb 14, 2007
Messages
74
Reason
DX UMND/PLS
Country
US
State
Virginia
Interesting article...that was dead on for me! Y'know between you, Zaph, and Johnnyliverpool you keep me amused with your sense of humor...it's always nice to find something to make you laugh...
 
Status
Not open for further replies.
Top