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scouse

Active member
Joined
Mar 3, 2010
Messages
37
Reason
PALS
Diagnosis
04/2010
Country
uk
State
merseyside
City
liverpool
Hi I am new to the forum I am pretty sure I have ALs or some form of motor neron I have a couple of question of all you people living very bravely with this illness day to day I only hope if I do have ALs I can keep my spirits at the moment I am very confused and scared of whats to come I live on my own and I am a very independent persson
I dont know if all my symptoms are relevant to the illness

Symptoms:balanc problems for about ten years (drunk walk worse in dark)
Hands ; cramps if I grip anything two years now both thumbs very weak
Hands; dont work when cold no feeling
Speech ; started to slur just over a year ago I can still be understood if I speak slow and slurred it is worse when tired
Arms ; went (funny) 8 months ago once couldnt control it when using my fork started to happen more often now
Legs ; occasionally feel funny after sitting down have to stand still for a minute till feeling and strengh come back

I have seen 2 neros
last app 6 weeks ago followed by EMG
romberg test; could not walk heel to toe at all also fell backwards when stood with eyes hut
EMG ;definate fasciliations in right leg saw them also have noticed them all over since
Tongue ; cant see fascilations unless they are very fine
I can protrude it fully out but dont know if thinner
Swallowing ;no problem although eating slower
Sorry about long story for 2 questions
Is the cramps in my hands or the funny feeing in my arm or legs spacitity
I had my EMG 4 weeks ago how is it befor results I do not have apppointment wit neuro scheduled said would write or send after tests
Thank you for yor time and all the care you all show on this site
love to you all
scouse
 
hi scouse (apt user name lol)
a yorkshire lass here.

i think the lenght of time you have had symptoms probably points away from als.
it does sound like you could have a umn problem like hsp or pls,though hsp tends to just involve the legs.
umn problems do cause weakness but not total paralysis as seen in als plus it is slow progressing 20-25yrs.
it can take 3-5yrs being evaluated from first symptoms to get a diagnosed of pls,having said that with your history it could be soon if it is indeed a umn problem.

the odd feelings could be spasticity,its hard to say.
odd times i have had the same trouble with my hands not working,like unable to use a fork which i think is due to severe spastic times.
many do have odd feelings in there legs like a vibration/tremor feeling,i started with it not long after symptoms started.

had pls nearly 11yrs. despite what neuro's and text books say twitching/fassics are common in pls,i have them.
its probably due to nerve irritation like in ms and nothing sinister involving lmn's.

it is hard to wait for results.
you may get a letter saying emg was ok or they will tell you at your next appointment.
hopefully they wont call to say they need to see you.
hang in there.:)
 
Hi caroline
thank you for you reply by the way I am originally a Yorkshire lass born in Middlesbrough came to Liverpool when i was 9
I rang the hospital today my notes have not been written up yet told to ring secretary on tuesday
I did look at PLs till saw Fasciiliations also had no fatigue at all till couple of weeks ago although still playing golf but takes a day or 2 to recover so have cut down to once a week
I was playing 3and 4 times a week befor the bad weather at xmas
looking forward to the warm weather as I as sure you must be
It is frustrating waiting for next step I would like to book a holiday in the sun but dont want to miss an appointment (taken a view I will do what I can while I can)
I have lots of days more often than not when as long as I dont have to speak or rush round and I can kid myself I dont have a problem
hope you are doing okay
take care
scouse
 
hi again.
just a point.............you do get fatigue with pls,it was an early symptom and continues to be.
many neuro muscular illness will cause fatigue,the muscles are weaker and tire out easily.
my son loves golf but only in the summer lol.
had a snow shower today,you can always bank on bad weather during the easter weekend holidays.
hopefully this year we will get a bbq summer:rolleyes:,then you can save some money:lol:
hope you get some good news when you call the hospital.
 
Hi
havent had snow had a hail shower today
feel a wimp today streaming with cold and sneezing all the time catching my tongue ouch :

I was playing golf in In Idonesia in January very very hot that did make me tired, I still kid myself I am fit and young I am 70 and did not learn to play till 3/4 year ago had a sedatory job in admin befor that
I forgot to mention befor my surred speech started last year iIhad a dry mouth for a for a few months it is still a problem when I speak which doesnt help I went to ENT said no problem

tried to do a smiley but dont know how to
take care
scouse
 
Hi Scouse, you say you had an EMG 4 weeks ago and are still waiting for the results? It should not take that long, they get the results right away. You should contact the neuro and either schedule an appt to go over the results or maybe he can just call you with the information. Good luck, that should give you a better idea of what you are dealing with.
 
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