Not much has changed. It seems I am getting stiffer. Neuro said no to a Bacloflen pump in that she said it would make me lose all tone in my legs.

Steve, My spasticity Dr has said the exact same thing, That is why I have held off. Specifically he is afraid I won't be able to do the stand and pivot transfer from bed to wheelchair for example. I would be looking at a hoya lift. But you still walk. I am assuming you have muscle strength and limited muscle atrophy. These pumps have to be assessed by a specialist. A trial is done - estimating the correct dose and then injecting Baclofen into the spinal cord. You see what the result is--can you stand, walk with the walker. Do you feel any less pain or stiffness. Then, if you are a candidate a Neurosurgeon implants it and your specialist monitors/adjusts the dose, does the refills, changes the battery every 7 yrs and turns it off if you have to have an MRI etc. Has your neuro explained all that to you?

For me the spasticity is changing my life into a extremely painful one with frequent daily spasms that can happen every 20 secs for up to 2 1/2 hours at a time and it takes up to 20mg of oxycodone to stop them. I just had a Phenol injection done - my left inside thigh is rigid and lt is fixed at a 90 degree angle when I sit Indian style. Awful experience but at least the muscle - leg moves down a bit more now,

Medical Marijuana Legislation just passed here but no telling how long it will take to get access to it. And the pain clinic where I go told me before if they found it in my monthly urine test I would be kicked out of the program. Now its legalized they tell me the same thing. And so many people say it is a major help with pain and spasticity,

MS absolutely sucks. But don't rule the pump out without looking into it more. I see a physiatrist for it. One of the guys in our group -bledblue (can't remember his exact spelling) has one but it hasn't helped him much. Seems very variable.

I've been going thru all this crap which is why I'm so delinquent in getting back to you. I wish it was for happier reasons.

Melanie

Thanks for the lengthly, well thought out reply. I was kid of dissappointed in her reaction regarding the pump in that I thought they could rgulate the dosage, leaving the rest of the body not receiving so much of the medicine. Currently I can walk with a rollator walker. My problem comes when I try to stand up. Sometimes I cannot force my leg to staighten. To get into my house, we still have 3 short steps. (It was 2 regular steps). I installed 2 handgrips to pull/stabilize myself. Some days my footpoints straight down and I can not lift/pull it up, just the three inces it needs to go. My wife cannot believe how strong spasticity can be- sometimes stronger than a board.

Maybe next visit will bring it back up and see where we are at.

Side note - Friday we went out. We got home and my wife had some staining to do in the basement for the base board trim going into our new bathroom. Long story short, stayed up till 1:30 am (I go to bed at 9:00). I do not go to te basement because it is too much work to get back up the stairs. Friday night I was able to climb stairs in the same manor as "normal" people, one foot on one step, one on the step above that. It was almost like a dream. Like dreams, it has not happened again. Still it was so cool. I makes me smile happy, yet it makes me sad.

This disease is so hard. it takes away, relentlessly and it's hard to remain hopeful. I think the only way I can manage is to just keep hoping things stabilize and keep working physically on movement. The spasticity is amazing in how rigid muscles become. I asked my spasticity for tizantidine several times and he kept saying it would not help and it is too sedating according to his patients. He has several thousand. He also knows narcotics help these rhythmic-like spasms i get every 12 hours. But he won't prescribe them. So if I had not accidentally discovered they work I would be in really bad shape. And if I had not had both the pain Dr. and Neurologist recommended it over his reluctance I would still be suffering. 2mg twice a day with 40 mg of baclofen as well is definately helping. Just can't take both together,

When

,,,,,,,,,,,,I first developed this illness someone said to me...a Pt I think, that neurologically the brain finds it harder to go downstairs than to go up. Why I don't know. Then you add in spasticity and strength issues the difficulty becomes much harder both ways.

it might be good for your Dr, to recommend a physiatrist/some other rehabiltation Dr. to weigh in on the Baclofen pump. Another thought is adding Baclofen if you don't get too sedated. I seem to manage pretty well considering I'm on oxycodone as well!! Did she ever mention Pool Therapy? Its Winter and i know you work. Just wondered.

Well didn't mean to carry on. Its great you still get those special days when things work like they used too. Somebody on the board just posted on the same experience.

Good luck on the bathroom venture. Great your wife is hands on. I get so annoyed with some women who are clueless about things like that. I am thinking of a friends wife right now in fact.

Be well and Happy New Year to you and your family!

Melanie