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olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,743
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.
 
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.
 
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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