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Active member
Aug 16, 2010
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 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?
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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).

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)
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.
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.
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
Thanks I'll try that. They do actually taste quite nice!
Rilutek, Vitamin C, Vitamin E, Cod Liver Oil.
Hey smiles...doing some good stretches will help more than taking any medications IMO.
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 ....
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?
Glen was on Rilutek, Zantac, Celexa and Seroquel. Then at the end, morphine.
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