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Rodstew

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Hi, I am new to this forum and newly diagnosed"d with PLS. As I have read in other posts some of you have the same symptoms and pain as I do.

I also have stiffness and spasms in my legs 24/7. My legs started hurting in 2004 and I have tried since then to find the cause and stop the constant pain. My new neuro diagnosed PLS at the first of Dec. 2008. Next appointment is 1/5/09.

I am currently taking 2400mg of Neurontin daily and using Percocet as needed for breakthrough pain but it is only about 75% effective.

Just wondering if anyone else uses these and how they work or if you are using something that works better?

Glad I found this site. It seems to be very helpful. Just sorry we have to have it.

Thanks
 

sral

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welcome Rodstew

I'm sorry to hear that you are in pain. Pain is definitely not fun. My mom has been in pain for a couple of years now. It has been more severe over the past year and to this day she has been unable to get any relief. The main reason is because there is not suppose to be any pain with pls so no one has answers. We are actually going to see non neurologists for the pain and have been unsuccessful.

If you learn anything please pass it on.

By the way, what type of pain are you experiencing, i.e my mom feels it most as she takes a step
 

Rodstew

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Thanks for the reply. My pain is a constant pain in my legs that ebbs and flows mostly due to activity. As an example I can awake in the morning and sit in a recliner most of the day and the pain is mainly in my Achilles Tendons and calves. If I get out and run errands such as grocery shopping and am on my legs walking a while the pain will cum up my hamstrings and thighs up to my hips. I also have minor pain in arms and hands if I use them much but nothing like my legs.

In the past few years I assumed this was from being on my feet all day as a retail manager. The last year it has progressed to a constant pain. After reading up on PLS I cannot understand how it is said to be painfree? How can anything that causes spasticity, spasms, and cramps be called painfree? I can only assume that means that the cause of the disease in the UMN is not painful?

All I know is that at times the Percocet will not stop the pain. I go to neuro on Monday and assume I will be trying Baclofen and Tizanidine. Will keep you posted.
 

olly

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hi rodstew

in mnd ,pls or als pain is a recognised symptom due to spasms,cramps,spasticity or joint contractures.
though i think pain is more of a problem with pls or umn dominant als due to umn symptoms.
i have been like you in pain 24/7 for some years now.
baclofen is really good and takes away the worst of the pain,but not all.
i am ok with baclofen but some can not tolerate it as it makes them feel weaker or tired.
if pain and spasticity is severe and oral meds dont work a baclofen pump is good.

welcome to the forum ,you will find many friends and support here:)
 

Roger Sanders

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My Neuro sent me to a pain clinic because I have 24/7 pain and it has been the best thing I have done. I take Baclofen 20mg-3 times per day, Kadian 20mg-2 times per day and Hydrocodone 7.5mg-3 times per day. I know it sounds like a lot but after about 5 to 6 years of continual pain it gets old. As long as I keep something in my system I feel pretty good. There are times when I have a flare up and it seems like nothing works. This doctor has a great bedside manner and really seems to care about helping me, which in turn means a lot to me also. He always has a lot of suggestions and he just wants me to be comfortable as much as possible. He has also suggested a Baclofen Pump whenever I think I need it but to me it is going to be a last resort. I tried the tizanidine but it was to strong for me and it knocked me out. I seem to like the Baclofen better. During real bad and aggressive times I will sometimes take a Percocet or at least half a pill to help aide the pain.
 

Jennifer51

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Hi rodstew.....I too have umn bulbar palsy and have had pain. I am drinking tonic water all day long now, which helps a great deal...My neuro also suggested Baclofen..he prescribed 2 x 10 mg x 3 times a day....60mg total....so I tried it...WOW it completely knocked me out...so I reduced it...with his approval, to just 40mg a day...I was not knocked out as much, but my neuro physio still thought it was too much, then the speech therapist asked about my swallowing and was horrified to hear that I was now getting liquids down the wrong way at least once a day...so said I should use thickeners. so the neuro, said, oh drop it down to one a day if you like....some difference from 6 a day. My swallow is now almost back to normal, rarely choking. so if the pain is bad I take 2 at night, otherwise only the one. What I am saying is...with your doctors permission you need to check what suits YOU...be aware that tooo much can cause other problems
 

sral

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Hi Jennifer,

I'm not sure I fully understand. Did your swallowing get affected when you took balcofen 6 tablets a day? You then decreased to only 1 balcofen per day and the swallowing/choking issues went away? Is this right?

The reason I ask is because it seems my mom is choking more since on balcofen program and the balcofen has not been effective at reducing the pain at all.
 

olly

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i echo jennifers remarks,side effects especially long term of baclofen is muscle weakness.
but the spasms cause progessive muscle weaknees so you can not win.
doses should start at 10mg and work up,they recommend doses over 60mg should only be administered in hospital under care.
with muscle relaxants you have to choose the lesser of two evils,pain or weakness.
 

Rodstew

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Back from Neuro visit

Thanks for all the replies. I just got back from my Neuro visit and he prescribed Baclofen 10mg twice a day. I don't think I will have any problems with that as I usually require a high dosage of anything to be effective. He also scheduled me for an EMG tomorrow since it has been a year since my last one and that one was with a Rehab Dr and not a Neuro.

Roger
I know what you mean about the never ending pain. I first complained about the leg pain to my MD in 2003. It now seems as though I cannot remember a painfree day. It sure gets old!

I will let you know how the EMG turns out.

Thanks for the support.
 

Jennifer51

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Hi Jennifer,

I'm not sure I fully understand. Did your swallowing get affected when you took balcofen 6 tablets a day? You then decreased to only 1 balcofen per day and the swallowing/choking issues went away? Is this right?

The reason I ask is because it seems my mom is choking more since on balcofen program and the balcofen has not been effective at reducing the pain at all.

Yes you understood me...I had some swallowing (going down the wrong way) issues and my neuro said my tongue was spastic, but said the baclofen would improve my speech which is almost gone now. When I went on a high dose baclofen I was choking on almost all my drinks...and I have to drink a gallon a day due to kidney problems...but since I reduced to one or max 2 tablets a day, then my swallowing has gone very noticeably back to being very acceptable...only very occassionally going down the wrong way...By the way it has not done anything to improve my speech, but my tongue does feel more normal. My neuro physio (with regard to my leg weakness) told me that too much baclofen makes the muscles TOO relaxed, so that must have been the cause of bad swallowing. But as I say, everyone is different and you should not mess with your doctors instructions without consent. But who knows your body best and the reaction you get? EVERYBODY is different
 

sral

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Jennifer thanks so much for your reply.

My mom is now taking 3 ten milligram pills per day of balcofen but her pain is still persistent. More than 3 pills makes her feel too weak. Her speech is not great but I can still understand her. It was her first symptom.

Was speech your first symptom too?
 

Al

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Hi sral. Has your mom ever tried Quinine 300mg. I've been using it and 2x 10mg Baclofen for a few years and it still works.

AL.
 

Jennifer51

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hi sral...yes slurred speech was my first real symptom...and I was spurting liquids out occasionally...though with hindsight I had been yawning way tooooo much and had had cramps when I woke up for a long time...my husband had told me to go to the doctor about the yawning as it was really bad. I agree with AL about quinine, but I drink mine in Schweppes tonic water...I dont want to take to many pills and the tonic works well for me.
 

sral

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Thanks Jennifer. How much tonic do you find works for you?

By the way, how is UMN bulbar palsy different than PLS?
 

sral

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Al,

The pain is getting pretty bad. The fact that she feels her legs overworked is a clear indication that the spasms are really out of control. The doctor said that the reason the legs feel like they've run a marathon is because they have literally exerted themselves (via spasms) as if they did run a marathon.

This said, do you need a prescription for 300mg of quinine? Did the doctors at Sunnybrook mention it?
 
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