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Mraz

New member
Joined
Jun 6, 2018
Messages
2
Reason
PALS
Diagnosis
05/2018
Country
CA
State
Ontario
I am a 61 year old female diagnosed in May 2018. Not a fan. Most of my issues are with my legs at this point and I am hoping to return to work (working from home though). Been to the ALS clinic here in Toronto and they were really supportive and helpful. Doing physio. Getting a foot brace for my left foot. Gave away all of my high heels which actually wasn't traumatic at all.

Recently started Baclofen and I've noticed increasing swelling in my ankles and feet. Anyone else experienced this?

On a cheerier note, I love this forum.
 

NinjaLady

Active member
Joined
Feb 8, 2018
Messages
75
Reason
Lost a loved one
Diagnosis
04/2017
Country
CA
State
BC
hello fellow Cannuck..sorry to welcome you to this unfortunate circumstance, but amazing group here.

Physio will be good for ROM and daily excercises/stretches that will be great for you every day. We have set up a weekly massage for my PALS that has been most helpful also.

Wedges if you can handle it will be way better than the heal on any day for any one really.

Baclofen will be your friend. My PALS is on 100 mg a day and we really notice if we even miss a dose. Not sure if the swelling is related to the Bacolfen as we haven't noticed this at all. Are you keeping your legs up during the day?
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,759
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Sorry to see you join our elite club xx
 

whereswaldo

Active member
Joined
Mar 3, 2018
Messages
83
Reason
PALS
Diagnosis
06/2013
Country
US
State
Ca
It may be partially due to muscle atrophy, your body needs your muscles to push fluids back up towards your heart. If you have less muscle to push, you will swell. If you can relax and put your feet above your heart, it will help with the swelling.

I would talk to the folks at clinic just to make sure it is not something else.
 

OutlanderALS

Member
Joined
Feb 7, 2018
Messages
22
Reason
PALS
Diagnosis
10/2017
Country
US
State
Georgia
So sorry to welcome you to the club, but you will find so much support on this forum. I take 50mg of Baclofen daily and have had no swelling; been on it for several months. (At this point, mine is also mostly my legs.) Come here any time when you need information or just for support; it's always here.
 

lgelb

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Joined
Nov 5, 2009
Messages
7,507
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Sorry to welcome you, Mraz. Massaging the fluid up from the feet along the calves is always a good idea. When you get a hospital bed, lift chair and/or wheelchair, spend some quality time with your feet elevated as well. And of course you can use pillows or a wedge for some elevation meanwhile.

Though it may not be to blame for the swelling, titrating baclofen to the lowest dose that helps is a good idea for that and other reasons.

Best,
Laurie
 

Angiegal

Distinguished member
Joined
Feb 15, 2017
Messages
301
Reason
PALS
Diagnosis
09/2015
Country
CA
State
Ontario
Hi and welcome!

Angie
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
718
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
I'm not a fan of you being diagnosed with ALS either but I'm a fan of the forum and am all for welcoming you to it. Hi!
Come here often to ask, rant or just to keep us company.

My PALS feet were very swollen when he could still move, Waldo and others nailed it. Feet up, swelling down. He also had feet with different temperatures a lot when one leg was more affected than the other. Now that both legs are completely paralysed and he's in bed or reclined mostly they are back to normal.
 

KimT

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Joined
Nov 18, 2014
Messages
3,342
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
No matter what else, I'd recommend massaging feet and legs. Besides being good for circulation, it feels good!
 

Mraz

New member
Joined
Jun 6, 2018
Messages
2
Reason
PALS
Diagnosis
05/2018
Country
CA
State
Ontario
Hi Kim. Yes, I have begun to massage the feet and legs. I was at the clinic yesterday and the neurologist said it Baclofen can cause this swelling. Recommended feet elevated at night. I see that it could be due to muscle atrophy since it becomes difficult for the body to push stuff back up the leg. Also recommended I go to my family doctor for bloodwork if persists. Thank you for replying to my post. I appreciate the support.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
162
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Hi! Glad you found this forum.

I am also a new member here. I was searching a couple months back for someone to comment on swollen feet and couldn't find anyone else with the same problem. I only experience this condition with time standing. My only response from my doctor and home health nurse have been to elevate them which has always been successful in alleviating the problem.

One question I have as a newly diagnosed PAL, what is Baclofen and what is it prescribed to treat?

Cathy
 

KarenNWendyn

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Moderator
Joined
Jul 29, 2017
Messages
2,328
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Welcome MRAZ and Cathy.

Baclofen is for spasticity.
 
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