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Old 02-16-2010, 07:33 AM   #1 (permalink)
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Default Help needed regarding PLS progression

Hello everyone. I was wondering if you all would help me out by providing some general information. I am looking for data on the progression of PLS. Understanding it is different for everyone. If you could please provide a synopsis from symptoms onset to current I would really appreciate it. If you were first diagnosed with PLS and later diagnosed with ALS I’d like to hear from you too.

For my husband progression has been:
2000 – numbness in feet and feet spasticity (only at night time)
2005 – balance issues began
2006 – began seeking medical treatment for balance issue. Resulted in 2 cervical fusions (later found unrelated to symptoms)

2007 – balance issues continue to get worse (neurologist does not mention PLS or anything else)

Aug 07 – my very active husband has to give up golfing, which he did about 3x week.

‘07-‘08 – a number of MRIs are done, blood test, lyme disease test, lumbar puncture etc are performed still with no diagnosed.

Aug 08 – begins using cane for balance, can barely walk 40 feet without rest, can stand 5 minutes tops

Sep 08 – First visit with Johns Hopkins. MS and HSP are ruled out, first time advised “probable PLS”.

Sep 08 – Began taking Baclofen (80mg/day)
Oct 08 – begins using wheelchair when walking requires more than 2 – 3 minutes
Oct 09 – begins using walker, can no longer drive
Jan 10 – Second visit with Johns Hopkins. diagnosed, PLS.
Feb 10 – Began taking Rilutek
Feb 10 - Cannot stand for barely 2 minutes, seeking power wheel chair for inside the home

Thanks everyone for your assistance.

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Old 02-16-2010, 03:43 PM   #2 (permalink)
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Default Re: Help needed regarding PLS progression

My Bulbar onset was in Feb. 2004. I was diagnosed with PLS in Dec. of 2006.
At the onset, my throat felt like it was closing up and I would speak through my nose; then it went to my speech slurring and then inability to pronounce certain letters. I remember the letter "K" was the first. Finally, all ability to be understood was lost. This took about 2 ½ yrs.
It wasn't until Jan. 2008 that I started having problems with my limbs (my left leg and my left arm). I had another EMG test (on the left side only) in Sept. 2008 and that's when LMN damage showed up on my limbs and thigh area, but not in the bulbar area. My neuro said the LMN damage was a "low number", so it wouldn't qualify for a reclassification to an ALS diagnosed. I don't know what the number has to be!
I feel like my left leg and arm have progressed more rapidly than when my bulbar symptoms started. I started using a Rollator in Jan. ‘09 and after many falls, I conceded to a power wheelchair in Aug. of ‘09. I am left handed and can barely write anymore. My energy was normal until July of 2008. Now, I get fatigued very easily. In January of this year, I had a visit with my neuro and she reclassified me with a diagnosed. of ALS. I am now noticing some slowness on my right side.

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Old 02-16-2010, 11:43 PM   #3 (permalink)
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Default Re: Help needed regarding PLS progression

Judie, your husband's progression seems to fit the bill for PLS. The progression can take decades (and probably will in my case).

I started having shoulder issues probably back as far as 2004. In November of 2007, my legs became very stiff, making it difficult to bend or stoop and my gait was awkward. Saw my first neurologist in June of 08. After a lot of blood, an MRI, EMG & NCV, she suspected PLS. Saw a VA neuro in 10/08 and did more testing. In 12/08, his opinion was PLS and that has remained so. I still think its BFCS.
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Old 02-17-2010, 12:31 PM   #4 (permalink)
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Default Re: Help needed regarding PLS progression

Sometime around 2007 I began to notice an inability or instability while walking, I was having trouble navigating a strait line and when changing surfaces, like from "carpet to non carpeted surfaces, concrete to lawn etc. I also began to "Pause" before walking down a flight of stair found myself having to use the handrails. I began to stumble more often too, I thought that this was due to the "Acoustic Neuroma" a benign brain tumor that had been removed in 05 causing "Vertigo" loss of balance. Things began to get noticeably worse around 08 and began to show signs of a limp in my left leg, I blamed the limp on an incident I had while racing my dirt bike. The fall was not a serious one had many over the years but it did hurt. Didn't limp much when weather was warm but soon as it got cold my leg would get very stiff and I had to use a cane to get around. Finally went to see MD. 12/08, X-rays revealed nothing broken Doc said condition should improve......got worse......02/09 saw MD. again but still no real tell tail signs.....seem I was only having trouble when it got real cold and since I live in "Sunny So Cal" symptoms remained hidden....06/09 back to see MD. and refereed to Neurologist....a battery of test,,,diagnosed PLS. I may be a bit off on dates as I have not kept a log but going to start one now.

GOD Bless us all.
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Old 02-17-2010, 07:17 PM   #5 (permalink)
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Default Re: Help needed regarding PLS progression

Thanks everyone for your feed back. Judith, I am sorry your diagnosed was reclassed to ALS. My husband is also easily fatigued. Unfortunately though he gets very little sleep. He is so uncomfortable and refuses pain meds, sleeping aids etc. I did purchase a sleep aid today from a Natural Market. Hopefully this will help in getting him more than 3 hrs sleep a night.

Zaphoon, I'm afraid to ask what BFCS is?

Chief are you able to walk sometimes without the cane?
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Old 02-17-2010, 09:34 PM   #6 (permalink)
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Default Re: Help needed regarding PLS progression

"Chief are you able to walk sometimes without the cane?"

Yes, on even surface I am able to walk quite well. trouble stepping over garden hose or extension cord and if I get in a rush or nervous, lose my balance or cold, then legs lock up and I am unable to move them. Since I can lose my balance quite easily I carry/use cane just in case. Thanks for asking
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Old 02-17-2010, 09:34 PM   #7 (permalink)
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Default Re: Help needed regarding PLS progression

BFCS = Benign Fasciculation Cramp Syndrome. It is a very annoying syndrome that involves many shared symptoms of PLS (cramping, stiffness, etc.).
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Old 02-18-2010, 06:19 AM   #8 (permalink)
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Default Re: Help needed regarding PLS progression

hi juisdie,your husband's progression over the last 10yrs is spot on with typical steady progression.
i am probably a little better than he is after nearly 11yrs but i noticed he did not start taking baclofen till 8yrs into his illness,were i was given it around a year after my first symptoms.
i think the neuro perscribing baclofen very early on helped me greatly.

1998 (unbeknown to me at the time)clumsiness with dropping things that people picked up on as not normal.

1999 balance issues first,even falling over to the side when in a seated position.
then a few months later pain and stiffness in the legs that got increasing worse.

at this point i took several weeks off work as i was hardly able to walk.
went to gp who sent me to rheumotologist.

went back to work but only lasted a week doing full time hours so had to stop again.
during this time my legs felt like lead and very difficult to move even from one room to another.

went to rheumo appt,he said i would need methetroxate (sp) but wanted to do blood tests first. he sent me to get a walking stick from physio dept.
i went back to work part time.
went back to rheumo,tests ok. mentioned other things going on and he said it was neurological.

a month later in sept99 i developed fatigue so severe that i was bedridden for 2-3wks unable to move,after i could not move my legs for a few weeks.
gp got me appt for neuro,i had a family member with ms and asked him if it was this and he said could be.

noticed also my left foot dragging and unable to pick it up.

end october99 neuro appt. notices balance issues,hyper reflexes and clinical weakness in my left leg.
orders mri and blood tests also provoked potentials test.

dec99 start with fassic's in legs,mostly left leg.

2000 have mri in january,turns out ok. potentials test ok.
go back to see neuro ,ms is top of the list. ck levels elevated.

from then it was just repeated testing ,mri repeated at various intervals.
a few years after my legs my arms gave me more trouble,but just general slow deterioration from one year to the next.

in 2007 i had my last mri,ms was ruled out but my co ordination and fine motor movements had got real bad so cellerbella/multi system atrophy had to be ruled out.
mri was again ok so genetic testing was done,again ok.

in nov 99 diagnosed umn desease/pls.

since then more bulbar problems started but progression very slow.
house bound 90% of the time,moved to a disabled adapted home over a year ago.
can still walk short distance with aids,do odd jobs around the home.

ive probably missed something but it gives you an idea.
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Old 02-22-2010, 04:39 PM   #9 (permalink)
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Default Re: Help needed regarding PLS progression

Judy, so sorry to hear about your husbands rapid progression this fall/winter. I have been thinking of your plastic dishware and am thinking of getting some soon.

My husband's PLS:
July, 2007 slurred speech
Sept 2007 tests
Sept 2008- diagnosed PLS, right foot dragging alittle
Sept. 2009- diagnosed- no progression noted, same status PLS
Oct. 2009 - speech deteriorating
Feb. 2010- speech deteriorating, foot dragging more often, falls 1x per month
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Old 02-23-2010, 11:32 AM   #10 (permalink)
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Default Re: Help needed regarding PLS progression

Quote:
Originally Posted by Zaphoon View Post
BFCS = Benign Fasciculation Cramp Syndrome. It is a very annoying syndrome that involves many shared symptoms of PLS (cramping, stiffness, etc.).
I looked up the symptoms of BFCS

Bilateral tremor of the muscles in the arms, head (titubation), legs and trunk
Shaking voice (voice tremor)
Clumsiness
Difficulty in fine movements of hands
Difficulty writing
Anxiety
Nervousness
Sweating
Nausea

I don't seem to share any of them.
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Old 02-23-2010, 04:33 PM   #11 (permalink)
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Default Re: Help needed regarding PLS progression

Zaphoon, how is your cramping and stiffness doing; any relief?

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Old 02-23-2010, 10:18 PM   #12 (permalink)
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Default Re: Help needed regarding PLS progression

Judith,

The cramping and stiffness are pretty much the same. Thanks for asking! I just deal with it.
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Old 02-26-2010, 08:27 PM   #13 (permalink)
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Default Re: Help needed regarding PLS progression

Zaphoon do you take baclofen? The baclofen reduced the cramping and spasms tremendously but his legs are still very stiff.
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Old 02-26-2010, 10:41 PM   #14 (permalink)
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Default Re: Help needed regarding PLS progression

The neuro I was seeing that just retired advised against baclofen due to possible side effects making things worse (i.e. bringing on additional weakness).

My next visit will be sometime in April with the VA hospital instead of the satellite clinic (the clinic neuro is the one that just retired so now I have to travel a bit further to the hospital in Arkansas). At this next visit, I will request baclofen. For now, I've been drinking a glass (or two) of wine in the evening to take the edge off of the cramps.
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Old 02-27-2010, 07:41 PM   #15 (permalink)
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Default Re: Help needed regarding PLS progression

Quote:
Originally Posted by Zaphoon View Post
The neuro I was seeing that just retired advised against baclofen due to possible side effects making things worse (i.e. bringing on additional weakness).

My next visit will be sometime in April with the VA hospital instead of the satellite clinic (the clinic neuro is the one that just retired so now I have to travel a bit further to the hospital in Arkansas). At this next visit, I will request baclofen. For now, I've been drinking a glass (or two) of wine in the evening to take the edge off of the cramps.
Zaphoon, Mike started baclofen in Sept 08. I strongly agree that it has contributed to more weakness however, he was experiencing about 12 spasms an hour at the minimum! So the side effect was worth a HUGE reduction in the symptoms. He reports to me that the cramping continues but the spasms are greatly reduced!

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