Status
Not open for further replies.

landofsmiles

Active member
Joined
Aug 16, 2010
Messages
90
Reason
PALS
Diagnosis
09/2010
Country
TH
State
Phuket
City
Patong
I was diagnosed last week.

Doc has put me on Rilutek and the maximum dose of Vitamin A 800mg and Vitamin C 1000mg he says the body needs per day. Also on Flaxseed Oil 3000mg a day and he tried me on Baclofen to help with the leg stiffness...I was on 4 x 50mg a day but they didn't seem to do anything so he's changed me to Sirdalud/Tizanadine...doesn't seem to help either...both legs paralysed when I wake up and takes ages to get any movement in them.

...and I still take 100mg of Vitamin B12 3 times a day...forgot to ask him if there's any point carrying on with that? Anyway just read on here it's useless if you take it in tablet form!?

Someone has mentioned looking up Creatinine...it helps provide energy to muscle...but I don't see anywhere you can get it. Looks like something that is formed inside the body.

Before I go to sleep I also take a sleeping pill...doc has told me to get off them...why? Also take a couple of painkillers Tramadol.


What are you on and is there anything you take you think makes any difference to you?
 
Last edited:

BrianD

Distinguished member
Joined
Sep 15, 2009
Messages
403
Reason
PALS
Diagnosis
08/2009
Country
US
State
Colorado
City
Colorado Springs
Smiles,

You will get a few answers from this forum, but an additional place for this type a question is the Patients Like Me site. You can do treatment reports/statistics on a lot of different medications and symptoms over there.

Were you trying the baclofen prior to the diagnosis? 4x50 mg (200 mg daily) is an extremely high amount! And if you were going to that amount over the course of just one week, that's a big problem. You have to ramp up those types of drugs (including tizanidine) slowly over days/weeks, and have to ramp them down similarly when discontinuing them.

I also struggle with spasticity a fair amount, and I use 50 mg baclofen daily, 12 mg tizanidine daily... and it works "okay". I just tried also adding 10 mg of diazepam this last week to help, but I will be stopping this as the side effects are too severe (drowsiness, and my wife says I'm little more scatterbrained).

Brian
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I have prescriptions for baclofen and gabapanten for spasticity, spasms and cramping but have decided to lay off of them. I do take 1000mg of vitamin C, 400eu of vitamin E along with a manly men's multi-vitamin.

My reason for laying off the prescribed meds is to simply really feel the degree to which I am being effected. Both legs spasm near constantly and for the past several months, my left hip muscles have been stiff and sore making bending and stooping a little slow. But, I have wine! Two glasses before bedtime is enjoyable! (currently enjoying some merlot)
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
Rilutek, amytriptyline, prilosec, modafinil, morphine, oxycodone, zanax, blood pressure meds ,baclofen, gabapentin, meclyzine, and ambien. Kim, our new neuro told us to cut out the gabapentin, which we did and Les started itching really bad again, so he only takes one a day now. His pain pills are on an as needed basis, usually one a day. He will not give up the Zanax though! He only can get 10 ambien a month, so I cut those in half.
 

landofsmiles

Active member
Joined
Aug 16, 2010
Messages
90
Reason
PALS
Diagnosis
09/2010
Country
TH
State
Phuket
City
Patong
Whole load there I've never heard of. Were they all advised by a doctor or just you researching?

Morphine! He must be in some real pain then. Where is the pain?

I only get pain in my legs and lower back right now.
 

scouse

Active member
Joined
Mar 3, 2010
Messages
37
Reason
PALS
Diagnosis
04/2010
Country
uk
State
merseyside
City
liverpool
Hi smiles
I was taking B12 4 per day but they were not being absorbed in my body so stopped but I spoke to a woman last week who has MS
who said she was the same but was told to place under the tongue and let them desolve they then go straight into the blood she has felt the difference B 12 with folic acid so I may try and see if it makes a difference re
take care
Scouse
s
 

landofsmiles

Active member
Joined
Aug 16, 2010
Messages
90
Reason
PALS
Diagnosis
09/2010
Country
TH
State
Phuket
City
Patong
Thanks I'll try that. They do actually taste quite nice!
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Rilutek, Vitamin C, Vitamin E, Cod Liver Oil.
 

Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
Hey smiles...doing some good stretches will help more than taking any medications IMO.
 

BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
2,981
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Omeprazole solution (for acid reflux control), Glycopyrrolate solution (for saliva control), Ipratopium Bromide spray (for postnasal drip). All of what I take are for controlling the mucous, phlegm and just general throat snot that are such a fun part of being a bulbarian.

Oh. and Rilutek which is for ....
 

landofsmiles

Active member
Joined
Aug 16, 2010
Messages
90
Reason
PALS
Diagnosis
09/2010
Country
TH
State
Phuket
City
Patong
I get a lot of massage and stretching which helps a lot as my livein/nurse/carer used to work as a masseuse. I am really worried about how quickly I am losing muscle in my arms and legs now. My arms are very thin and weak now and my calf and thigh muscles are soft and squishy.

Only recently diagnosed but already feeling like I could be gone within months as I can't bear the thought of being fed through a tube and breathing with a ventilator. That will be the end for me.

By the way anyone taken Ubiquinol and noticed any benefit?
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Glen was on Rilutek, Zantac, Celexa and Seroquel. Then at the end, morphine.
 
Status
Not open for further replies.
Top