Hello out there !

[Alyoop]

I have just recently been diagnosed with possible PLS. After 3 gruelling years of investigations, I have changed Neurologists and been told that I have possible PLS. Amazing what you can find out by getting a neurologist that actually bothers to listen and examine you thoroughly! I am a nurse that specialised in neurology, so have a resonably good understanding of what I am dealing with. Just to throw another snippet of information on the heap, I am married to a neurologist as well. This means I have a very unhappy husband who thinks that I have a slowly progressive form of ALS! Hence a question that may or may not help both him and me. Do any other PLS sufferers have fasciculations in there legs, pretty constantly that only sometimes show up on EMG. My most recent EMG did not show any, althought they twitch about 80% of the day?

 

[Northern Dancer]

Welcome to the forum, Alyoop.

I was diagnosed with PLS in January. I have only occasional fascics and they are not confined to my legs. Many years ago I experienced a 2 month period of fasciculations everywhere. I was told it was a post viral effect after pneumonia.

The only symptoms that I was aware of prior to diagnosis was that I fell with no apparent reason. Other than that all my signs were too subtle to make me wonder what was going on. My neuro feels confident that my progress is so slow that she has ruled out ALS.

I feel for both of you. Hope more of your questions get answers.

Northern Dancer

 

[johnnyliverpool]

well, alyoop...3yrs, and your a nurse married to a neuro...and its taken 6yrs for me to have no diagnosed at all!........................................i ain"t got nowt to complain about then....you could be a minefield of info..take care johnnynodiagnosed........

 

[peter57]

Hi Alyoop, welcome to the forum sorry you have to be here but we are a nice bunch here, with heaps of info and laughter as well.

I have been diagnosed with PLS as well but have very few and occasional fascics, almost 100% in the legs and only when they are up. ie in bed.

Now there is one person on this forum, who has i believe many. Hopefully he will post an answer to you. Come on Zaph.

Your posting re the time for diagnosed and what you do for a job etc might shed some light to all those who get frustrated when they dont get diagnosed in their first few visits.

Cheers from another "Down Under" person.
Peter

 

[Alyoop]

Thank you for your help. I am very grateful for the reply. It is very difficult going through this when I am usually being the person that likes to help others. The fact that some other people with PLS have Fasciculations is reasurring. My husband is very negative at the moment as the people he has diagnosed with PLS (only 2) slowly turned out to have a slower form of ALS so he just thinks I will be the same. I try to stay positive but he makes it rather difficult. At the moment it is harder for him than me I think. We are about to head off for a month away in Europe as he keeps saying it may be my last chance Bless him?Ha Ha. I will looks forward to chatting as I am a rather verbal person (or so my patients think). Yes I am a hive of info and have a Neurologist right beside me in bed, sooooo..... If anyone has urgent queries maybe I can make use of him.

 

[Tokahfang]

I too have fasciculations, they started 7 months ago now and all of my progression has stayed in the upper motor land. Welcome to the board, it is good to have you!

 

[Alyoop]

Thanks. You have no idea what a great day I have had. Can't wait to tell hubby when he gets home from work that having fasciculations may not mean I have UMN-D ALS, like he thinks. I have been singing all day. Might get to see my 11 year old reach 21 yet!

 

[olly]

hi alyoop,welcome to the forum.

i have had pls 11yrs now and still just walking with aids.
i started with fassic's about 10mths after first symptoms,my legs twitch alot.
it took me 7yrs for diagnosed as they were ruling out ms for a long time then msa.

there is supposed to be no fassic's with pls but thats not true as many have them.
i think its due to nerve irritation like in ms.

after 3yrs and no lmn involvement i would say things are looking good for you,with regards to als.
it is estimated 50% of those diagnosed with pls go onto a diagnosed of als,but usually they wait 3-5yrs before giving a definate diagnosed of pls in case things change.

great to have you here:razz:

 

[Trapped in myself]

What are Fasciculations?

 

[Zaphoon]

Hi from in here!

I have been throwing the neuros for a loop for over 2 years now. One suspected I have PLS and another was pretty darn sure.

I have fascics like crazy in my legs along with cramping and stiffness. Mornings are the worst! The fascics have to be reclassified as spasms in the morning as they get "charlie-horse" severe. Oh, weep for me!

All I have to do to rid myself of these spasms is to get out of bed (which I do quite readily). After walking around a bit (first few steps are shakey), all is well and I'm back in Kansas to the delight of Dorothy, Toto and company.

I take my baclofen to soften the cramping throughout the day.

I have a half-baked Babinksi sign which is making my new neuro shake his head and shrug his shoulders. My big toes won't go down or up with the plantar reflex and I'm very hyperreflexic but I have no jaw-jerk or Hoffman.

My next visit with the neuro is in 2 weeks and I am in hopes that I can convince him to give me the all-clear from PLS and reclassify this mess as PNH or Isaac's (or my favorite - PNS!)

The best to you each morning!

Zaphoon (PZ)

 

[Alyoop]

Told my Neuro husband about the replies re fasciculations. his response was "why arent we told this in all our training" So remember your Neuros are people limited by experience and training. They continue to learn alot from their patients.

My husband is a great diagnostician. He loves a puzzle. It was a pity I could no go to him for my problems. he told me 2 years ago that it was some sort of MND, but my crappy Dr (a personal friend) said no.

The Baclofen is great. I can now get up off the floor!

I work doing Clinical trials in Neuro. Mostly MS studies. There is exciting progress in treatment for MS. A pity I have no MND studies. I would definitely be a starter.

Great to hear from you all. I feel a little less alone already.

 

[lydia]

Hello Alyoop,

I posted last night to your thread but the internet started to draaaagggg and I finally gave up in frustration. So a delayed hello! While I don't have a PLS diagnosed, I have upper motor issues (stiffness, spasticity, hyper-reflexes) and have always twitched since the beginning of all this.

I am curious about your comment about baclofen helping you get off the floor. I feel that my trouble getting up from the floor is due to weak and wobbly thighs, not necessarily my stiffness. How does baclofen help you?

Lydia

 

[Alyoop]

I am really not sure. I think that the stiffness was obviously contributing to the difficulty rising from the floor. It is definitely easier now that I have started on the Baclofen. I take 15 mg 3 x a day.
Nice to hear from you
Aly

 

[BeckyUK]

Hi Aly,

I'm going to get myself on Baclofen if it means I can get off the floor! At the moment I flounder about like a ladybird on its back or have to pull myself up on furniture like a baby!

Welcome to the boards - I'm only an occasional poster but do find some of the info on here really invaluable in dealing with things. Often it's just nice to know you are not on your own and not going mad!

Becky

 

[Trapped in myself]

So Fasciculations are just a fancy name for spasms or cramps? BTW thanks for answering my question!