drugs

mydog · 07-10-2009, 11:41 AM

I want to know if anyone has alternative suggestions for drug regime for people with mainly upper motor neurone symptoms. ie, stiffness of lower limbs.
I am writing on behalf of my husband who has recently been diagnosed with mnd. It is possible, though not confirmed that his mnd may be pls, ie slowly developing At present he takes 2 clonazepam 500 micrograms three times a day to control the spasm and one citalopram for his mood. He has previously been on baclofan.
We are concerened that the high dozage of clonazepam may be affecting his speech...something is! Chris knows he benefits from the clonazepam because it does improve the spasms, but wonders what alternatives there are around ???

Wynn · 07-18-2009, 11:04 PM

I have been dianosed with PLS, but I also have essential tremor. The tremor specialist put me on neurontin (gabapentin). My doctor at the ALS clinic had prescribed baclofen, but I had not started taking it. He was so pleased with the neurontin that he told me not to take the baclofen.
Wynn

Zaphoon · 07-19-2009, 12:41 PM

Mydog,

I have a differential dx of PLS and I've had more than 1 neurologist tell me they are hesitant to prescribe anything for the spasticity and cramping as the side effects (in my case) may outweigh the benefits.

Their main side effect of concern is weakness. I'm working a full work week and need all of the strength I can muster. I have also let the doctors know that I am not a big pill guy (at this point in time). I may, however, turn into a big pill guy down the road, should things accelerate.

Zaphoon

mydog · 07-19-2009, 02:20 PM

Thanks for your replies. I have not heard of neurontin before, and will check it out. Does anyone take quinnine?

Mary

Blackpool · 07-19-2009, 03:21 PM

I am taking neurontin for spasms it seems to help,quite a few people on the forum have suggested tonic water which I love ,soaking in a hot bath helps me, unfortunatly I can't sit in the tub as I can't get up I am going to look into a bath seat with a remote control. Hope this helps.

Blackpool · 07-19-2009, 03:23 PM

Forgot to say Tonic Water has quinnine in it.

Al · 07-19-2009, 03:55 PM

I took Quinine for a few years with Baclofen for cramps etc. I weaned off it to see if I still needed it. I guess I don't. Haven't had more than a few bad cramps in torso. I'll stay with the Baclofen for now though.

AL.

GlenBrittle · 07-19-2009, 06:37 PM

Hey MyDog,

I bought a case on tonic water with Quinnine in it. After 6 cans of that gawd-awful stuff, I can attest to two things.

1) I still get cramps - so it doesn't work for me.

2) Never do I want to taste that stuff again.

Glen

joelc · 07-19-2009, 06:45 PM

Glen, you live in Canada which means your doctor can prescribe Quinine. It really worked for me in the larger dosage. Tonic Water did not have enough in it for my needs.

Al · 07-19-2009, 10:51 PM

Mine was 300mg if I recall. My GP didn't think they still made it but I insisted and he prescribed it reluctantly because he didn't think it would work but it did. Guess all the big muscles are gone now because I don't need the quinine now.

AL.

GlenBrittle · 07-19-2009, 11:32 PM

Thanks guys.
I think I will try to ride them out for now.
They don't last long in duration so far.

Glen