For those of you who cannot take Baclofen

[SpringOwl]

I am new here and because I am in limbo I don't like to post often. I have joined the ALS patients like me forum but not to many people answer my posts because most ALS patients don't have much pain.

Although I have not been diagnosed with ALS, I believe it it what I have but I think I have a less common form that involves the upper motor neurons over the lower motor neurons.

Upper Motor neuron problems cause Hyper reflexes, Babinski sign, clonus, and spasticity. (I have lots)

Lower Motor neuron problems cause muscle atrophy and fasciculations. (I have some)

I have so much pain in my legs from spasticity in my legs I think I may go crazy. I take generic Klonopin .25 (3) times a day and I just sit and watch the clock so I can take the next dose. It does help but I am building up a tolerance.

I am crying so hard right now, I can't see the keyboard. I only have muscle pain, not nerve pain and I cannot tolerate baclofen. Baclofen made me to weak to walk. It gave me cramps and when it did wear off my spasticity seemed worse. I tried Zanaflex and it also made me very weak and did not last very long.

I am desperate, please, if you can, help me with what you take and when. I wish baclofen helped me because it seems like a wonder drug for so many. I have tried so many cocktails of this stuff I am at my wits end. Please share your cocktail for spasticity if it is not baclofen.

Tonight is really bad and I need something.

If I do have Upper Motor Neuron dominate ALS, chances are I will live longer but the trade off is the pain of spasticity.

I understand nerve pain is much worse than muscle pain so I can't imagine feeling worse than this.



Thank you for listening to me whine and cry.



Amy

[jazzgirl]

Amy, do you have a regular neurologist that you can call for some advice? If so, I think it's time to ring him/her up!

I really know precious little about ALS except for the fact that it is fatal. What leads you to believe that this may be your problem?

I can't take Baclofen, either, mainly because it does absolutely nothing for my spasticity. I take Zanaflex through the day, and .25 of Klonopin at bedtime. It makes things bearable for me, although I am "thisclose" to inquiring about a Baclofen pump. I've already had one MS specialist say that he thought I should have one.

If you don't mind me asking, what IS your diagnosis right now. You say you're in limbo, but what is being investigated for you at this time?