Old 04-21-2010, 11:38 PM #16 (permalink)
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Default Re: Do you have PLS?

I am a perfectionist! If I can't do it right I don't want to do it at all! That being said . . . I don't let the diagnosed be a defining moment for me. I am a person with PLS, not a PLS person! I try to roll with it . . . and make adjustments where I need to! I am not saying that I don't have my "moments". I'm just now getting to the point that I will admit (after trying) that I can't do it and this is why. For a while, I've tried to "hide" my issues and blame my clumsiness when I could. But now, rather than letting everyone believe I was drunk (especially at church) when I walked, it would be better to "let it all hang out" and let it be known. That is not to say that I'm going to wear a t-shirt or a sticker on my forehead that proclaims it, but I'm not going to try to hide it, either!

Believe me . . . I understand most of what you're feeling (I've probably been there myself) and you are ALWAYS welcome to "talk" to me!

Valorie
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Old 04-22-2010, 05:09 AM #17 (permalink)
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Default Re: Does anyone have PLS?

hi valrunk.
sorry i did not respond sooner but i have been quite ill.
i did mention in your thread on the pls forum about more info that there is not a great deal about.
to know more about how it effects individuals and more personal information i suggest you look through the threads on the pls forum..............there you will find a wealth of info from those of us living with pls.

its nearly 11yrs since i started with the spasms in my legs,been on baclofen 9-10yrs.
i was 31yrs so quite young but i have heard of juvinile pls(probably genetic)
mine started in the legs and has slowly worked up to the bulbar area.
but i am still functional(just) and try to be as active as i can depending on how my body wants to cooperate.

as for baclofen...........they start you on a low dose and work it up till you feel a benefit but you can not exceed 60mg unless its under supervision in hospital so please dont take more than 60mg.
if there is no efffect with oral baclofen or the patient cannot tolerate it they can be considered for a baclofen pump.........i have heard excellent reports on this.

as for me my stiffness is sometimes not too bad compared to the early years but i put it down to being on baclofen for so long.
my main problem now is weakness from having pls for 11yrs plus some disuse atrophy.

if you have any problems or questions you can post in the pls forum .
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Old 04-22-2010, 09:11 AM #18 (permalink)
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Default Re: Does anyone have PLS?

Blubear, I am sort of confused about the baclofen. My doctor says that the max I can take is 80mg. But, Olly says 60mg is the max. In THAT case, I'm at the max.

Olly, you said that you've been really sick . . . with what? I've heard about the baclofen pump but I don't think I qualify. What I've read is that it is for people who do not tolerate it well when taking it orally.
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Old 04-22-2010, 10:08 AM #19 (permalink)
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Smile Re: Does anyone have PLS?

Val,
I'm sorry I didn't respond sooner. I don't get on here consistently. I actually have a differential diagnosis of PLS/ALS. I have had symptoms for 3 years and my first DX of ALS came about 18 mos ago. I had a second opinion DX of PLS, and a 3rd of PLS/ALS. My symptoms are mostly upper motor neuron, and started in my right ankle and mostly affects my balance. It has progressed some, and has moved to my right hand. I also have very "hyperactive" reflexes and if I am startled when standing, I will lose my balance, as my upper body reacts and my legs do not respond quickly enough maintain my equilibrium. It's really quite comical, except to me, but I laugh anyway. My walking is stiff and off-balance, and I use a cane when outside

I am on baclofen (10 mg 3x daily) for stiffness and xanax (.25 mg 3x daily) to control the quivering in my leg and hand, which I believe is often caused by anxiety over the loss of normal function. I have physical therapy once a week. The therapist stretches my legs and ankles and helps me with exercises to challenge and improve my balance. I go to an ALS clinic, where my symptoms are monitored. My neurologist there says most cases of PLS are just slow progressing ALS, so he feels I am in the right place. I have some muscle twitches (fasiculations), which he says are LMN symptoms, but so far have no bulbar symptoms. I am just thankful for the slow progression.

It is all very confusing, so I totally understand what you are feeling. Hang in there. I will be most happy to chat with you about this.

Pam
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Old 04-22-2010, 04:07 PM #20 (permalink)
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Default Re: Does anyone have PLS?

PamelaSue, welcome! I think I've overcome the ALS hurdle. They usually take a "watch and see" approach before they diagnose PLS. What they thought was PLS in the beginning may be ALS "in disguise". But, after about 10 years of the same symptoms (albeit, much worse than before) before I got this diagnosed (totally by accident) he was pretty confident that it was PLS. I guess that I can thank God (literally and every day) for the fact that it has progressed so slowly! As I've said before--I choose to be a person with PLS, not a PLS person! Although some days are harder than others. XO Valorie
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Old 04-22-2010, 04:45 PM #21 (permalink)
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Default Re: Does anyone have PLS?

I am new here. I don't know what I have yet. I am having an EMG next Tuesday. After that a spinal MRI and tons of blood work. I have been ill for almost 2 years.My doc is doing tests to find out.I have twitches,left thigh atrophy and now right side of stomach is atrophying.It is scary but I have had an idea I could have ALS or PLS.I enjoy reading your posts and God bless you all!
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Old 04-22-2010, 05:18 PM #22 (permalink)
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Default Re: Does anyone have PLS?

Hi Val, I just checked on the net and the max dosage is 80mg. So dont go over that!
Hugs, Kari
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Old 04-23-2010, 06:42 PM #23 (permalink)
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Default Re: Do you have PLS?

The V.A. gave me a bottle with enough to tie me over until they mailed my prescription to me. It just arrived with today's mail - 270 10mg tablets! I guess that's a 90 day supply according to my wife's math.
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Old 04-23-2010, 08:32 PM #24 (permalink)
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Default Re: Do you have PLS?

Ah! The good stuff--cramp candy, here we come!
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Old 04-25-2010, 12:19 AM #25 (permalink)
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Default Re: Do you have PLS?

Hi Val,
I have been diagnosed with PLS as well so there are several of us here with this diagnosed.
please see my posts re my condition etc but a snap shot of it is as follows.

First symptoms in app 2005/ 06 (balance and speed of trigger finger)
diagnosed in 2007 with Parkinsons.
changed to PLS in 2008.

current situation.
on 75 mg of Baclofen / day
Rulitek (sp)
multivitimans etc.

main areas effected,
legs, balance.
left arm/ hand.

use a walker/ cane or gopher for getting around (depending on distance).

dont think the baclofen is doing much for me, just back from a trial for a pump. (see my thread on baclofen pump test) initial good results from that.

I hope this helps you.
Just ask any other questions that you have as you see we have some very experianced people on here with this diagnosed. Olly and Zaph to name 2.

cheers
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Old 06-10-2010, 02:20 PM #26 (permalink)
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Question Re: Do you have PLS?

Yes I have PLS I was diagnosed in 2000 and have slowly progressed to where I use an eletric wheelchair to get around. I can only walk with a walker but not very far and I lose my balance very easily. I am trying to find out if anyone has the same trouble I am having with constantly coughing up phlegm.

It started some time ago and seems to be getting worse every day, I spend so much time coughing it up every morning when I get up and during the day. when I drink anything acidic or with strong flavouring it seems to triger an irritationin my throat which causes me to cough involuterily and sometimes I start chokeing and cant breath as it cuts of my windpipe and until I can get it out I cant breath it is very scary.

I am told by my Neurologist that it is part of the disease but I wonder if any of you have thew same problem and could give me any advice as to what can be done to relieve it, the Doctors dont seem to be much help. I would appreciate any sugestions.

Fred.
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Old 06-11-2010, 01:13 AM #27 (permalink)
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Default Re: Do you have PLS?

Fred, I have bulbar onset ALS and one of the first things I was told was no acidic drinks and especially no citrus drinks. I have had several closed off windpipe episodes like you described and yes, they are very scary. The best thing to do is to try to relax, hard to do when you cant take a breath I know, but it does work. I have a suction machine to help get stuff out and maybe you might want to look into getting one. The other thing is to make sure that you take in lots of fluids (water) so that the saliva stays thin and doesn't turn into thick goo which is really hard to deal with.
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Old 06-11-2010, 10:47 AM #28 (permalink)
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Smile Re: Do you have PLS?

Thanks Barry for your reply, I already have a suction machine but sometimes the phlegm is to deep to get and I still have to get it up into my mouth before I can clear it. I also have a cough assist machine which also helps, it gets so frustrating when it goes on constantly throughout the day it seems like lately it has gotten worse I am wondering if it has to do with the fact that it is the worst alergy season in a while and I do seem to have a lot of sinus pressure until I can clear out all the mucus then it seams to ease up for a while.

I would also like to hear from anyone who has PLS that has similar problems, I know that the symptoms are similar to ALS but it is hard to find people with PLS to talk about all the problems associated with it and any sugestions as to anything to overcome them.

Regards Fred N Wilton
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