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olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi al
i am currently getting a diagnosed of pls,i have all umn signs/symtoms.ive been ill 8yrs.
the past 2yrs i have started to deteriorate faster ,especially past year.
i was told ive developed hypotonicity(loss of mucle tone,and loss of ability of muscle to contract.)this is not same as atrophy or weakness but more loss of function.
its a lmn sign/symptom caused by lmn lesion.in mnd it can be proressive and fatal as it effects respritory muscles.i asked neuro about it but was reluctant to answer.
i also have respritory problems, arrythmias,hypotention,breathlessness,and can have blackouts.my blood test was ok and sodium levels normal,but neuro said i have to increase my salt intake.i found on web sodium/potassium channels can be damaged in mnd(if you go to wikipedia it goes in detail all about u/lmns and chemical channels)it said sodium channels may become blocked by buildup of potassium so a muscle cant contract properly.
so im in limbo at moment ,not sure now if its pls/pls changing to als/or umn onset als.
going to have emg,any thoughts? i would welcome them with you being most exsperienced.hope you are ok,best wishes caroline.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi olly. Usually with PLS if you only have umn signs for 2 years or more the disease usually and I say usually with a ? mark, remains a purely umn disease. As you have had it 8 years with no real lmn signs there is a good chance you have something else going on rather than transition to ALS. The EMG/NVC should help to sort it out. I'm not a doc so it's just a guess but I do wish you all the best. Let us know how you make out.
AL.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
to al

thankyou al for your time and reply. ive not heard anyone else with pls mention having lmn lesions,so got a bit scared.i had nvc 4 yrs ago and it was ok neuro said i dont have any neuropathy. i live in a small town with small hosp, my neuro is not specialized in mnds,so is a bit slow on the ball.so im going to ask to be refered to neuro who is.the nearest als/pls clinic is at least 50+miles away.it can take several months to get an appt here,so not sure how long till emg. thankyou again for your trustworthy reasurance.
take care and best wishes to you:)
 
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