info for newcomers

[olly]

we are getting alot more new comers to the pls forum with questions.
pls is one of the rare neurological illnesses,very hard to diagnosed and there is still not much known about it.

i have done alot of research over the past few years since my diagnosed.
there is not a great deal of info available but i have put together the best there is .

Primary Lateral Sclerosis: eMedicine Neurology
Primary lateral sclerosis - Wikipedia, the free encyclopedia
Primary Lateral Sclerosis Information Page: National Institute of Neurological Disorders and Stroke (NINDS)
Motor Syndromes

there is a part in emedicine that states no bladder symptoms,that is now outdated info.
the spf have now revised info to include bladder symptoms in pls due to the fact that it has come to light more pls patients have bladder symptoms.

there is a sticky at the top of the forum for the spf synapse that i update when new issues come out.
theres info on fundraising,articles from fellow pls'ers and caregiving info.

al,if you could please make this a sticky i would be very gratefull.
thankyou.

 

[olly]

i forgot to add the info from spf.
SPF - Primary Lateral Sclerosis General Information

 

[Tokahfang]

I just wanted to add that the SPF's PLS-friend mailing list is very active, friendly, and larger than the PLS community here. It is well worth joining.

 

[Northern Dancer]

Beky,

I love that list, too! Very personal, informative and supportive.


ND

 

[olly]

becky and nd,i too am a member of pls friends but not been there that ofton the past year or so.

 

[johnnyliverpool]

olly..you keep striking the cords for me!..over the years of investigation my doc decided my bladder problems were caused by my prostate....so he plunged his finger were the sun dont shine...put me on prostate tabs and they did help somewhat..now given what i have posted previously you would be forgiven for believing am just a lousy story teller but i assure you am always truethful.....he sent me to see the water works guy...cant remember what you call "em for the minute..anyway i ended up having a polyp removred ....useful..over time i lost count of the number of times "the finger" was employed..but in one session the senior guy and 2 students had a shuffty.... finally the doc decided to have another go and i made it clear it would be the very last...asked him if my prostate was swollen( yes i know, i should asked way back..but i had a policy of...they know best).......staggeringly he said no he could"nt feel anything.."so my prostate alright then, doc?".......he replied..it might be swollen on the inside..........well i still take the tabs..but yet again a connumdrum..is my prostate enlarged?........now you mention bladder probs with pls...! ....so my umn syndrome could be the real culprit........well al go to our house!.........yors thoughtfully.......johnnysorebum...

 

[Alyoop]

I Read very interesting Neurology Journal article the other day about a slowly progressive form of MND that has a genetic origin. It too mentioned that bladder symptoms are common. There is more info out there than the neurologists
know about. My hubby has done all sorts of hunting recently thru the journals. I believe from what he said that there is a test available (USA I Think). Not that I would really care to know.

This other form also has normal EMG like PLS. He was amazed as the symptoms could have been straight out of my diary (if I had one).

Its all so uncommon that they really, just do not have the time to research for every patient.

 

[olly]

johnny,sometimes i despair over doctors.

i started with bladder symptoms half way through this disease and was sent for tests.
one embarrasing test was were they connect a thin pipe to your bladder while your laid down,a bit like a catheter.
then they fill your bladder full of water,there were machines involved but dont know what they were for.
then they ask you to stand on a sheet of paper an cough.
being forced to wet yourself infront of others is very undignified.

during the exam before hand the lady "specialist" did an internal exam.
she announced my cervix felt ok what the!.
i started to panick and told her how can that be when i had a hysterectomy part due to previous cancer and ongoing disease.
she looked through my hospital records and said" oh yes,they did remove it:roll::roll::roll:
she was a little embarrased to say the least.

my bladder problems are ................bladder spasms,were i feel like i need to go all the time.
weakness due to the bladder spasms include needing to get to the toilet as quick as possible.
any sudden cough,laugh or sneeze and thats it.
i do get spasms on either side of the groin occasionally,i think its when my thighs are really bad.

now you know,its the pls causing it not your prostate.

alyoop.
because its so rare very few neuro's ever see a case of pls.
research is mainly on hsp or als,but anything they uncover will be of benefit to us.
i am a member of a few neuro science web sites.
if you like reading more advanced material on pls and studies then these sites will be good for you.
Medscape Search
primary lateral sclerosis and mri - PubMed result

 

[olly]

heres another.
Wiley InterScience: Search Results

alyoop.
you will find far more advanced material on these sites than most neuros can tell you.

 

[Alyoop]

Thanx. My dear sweet hubby is a neurologist so has access to huge amount of stuff. I think I prefer it when he stops looking as it scares him too much and he passes it on to me. I have asked him to just leave it alone and let me get on with coping in the best way possible.

 

[olly]

i can see how your hubby being a neuro can be a negative as well as a positive thing.
sometimes too much info is just that lol.

 

[johnnyliverpool]

olly, olly olly........what a way to be treated...deary me......crikey!...and i thought i was treated rough...god bless you..............

 

[Zaphoon]

Excellent work, Caroline!

 

[johnnyliverpool]

actually i think i might have!..do you wana hear?...al tell u anyway..........stripped and with the smock on i walked into the room.....across the way was a guy sat in what looked like an aeroplahe cockpit..3 nurses around and a table...dutifully i lay onthe table..with that a end of a hosepipe was inserted up my rear,,,then taped into position..the nurses were matter of fact the pilot had a mischevios look on his dial...i was worried.....were just pumping some dye in , are you comfortable jonny? the nurse said..yes, i lied...with that the table went crazy...lifted off the ground and took off with the pilot in control..he went on to fly me upside down , this angle that angle everyway which...i was strapped in by the way.....after the landing i was directed to the toilet behind a curtain...they had already kindly remove the hosepipe.....sat on the loo noisily emptying myself of the dye and whatever else..in walked two young attractive nurses..apparently unaware of this senior gentlemans acute embarassment red faced i got myself out of there and to this day i don know for sure what it was all about.....johnny

 

[johnnyliverpool]

hi zaph.............................