intravenous methylprednisolone?

[hlh]

I hear excuses. Change is needed. Sorry to be harsh, but the status quo isn't working. If you work from home, then can't you move your home somewhere else? Is your wife working? Is there anyone who can help you... either now, in other cities, or to help you move? These are questions for you to think about, and not answer online.

Moving to a new spot may also give you better choices of doctors, therapists, physiatrists etc... Moving is never easy but it will be harder the older you get and the more disabled you become.

Home PT/OT stinks. You need a PT from a major hospital based center that is very experienced with neurologic injuries. It is a pain because you have to go to them, but you need some better input. If you don't have a method for getting out of the bed when your spasticity is worse then you need more input, better equipment and a change in your medications. PT's from the outside will often make a home visit to help re-evaluate your equipment.

Every time my Dad has a rut, we re-start PT... and directly address the problem at hand. Your bed/current spasticity situation isn't working. There's a problem with clear goals. Looking for a new neurologist will help with the big picture but wont solve TODAY's problems. I would even think about trying the Ampyra again for a few weeks. Does your spasticity improve? Maybe Ampyra doesn't increase your walking speed, but remember... sometimes small goals can have a big effect on function and quality of life.

If you think there may be an association with increased spasticity the day after infusions, then why not take an extra spasticity med that night? Why not have a plan of what to do? Again, if you have been doing alright overall, I would not be giving up on the steroids.

Because you seem very motivated to look for more options I am kicking you in the butt a little. You can do it. But honestly.... looking for a cure is not going to be high yield. But optimizing everything around you to be functional, and following recommended treatments that are already known to potentially help people is a good place to focus your energies.

You can do this.

[willingtocope]

hlh: I do appreciate the kick in the butt, but here's the thing...I'm only 67. Based on my family history, Ive got another 25-35 years to live. I'm not going down easy, and I'll be damned if I'm going to spend those years being spoon fed because I gave up.

None of the "recommended treatments " have had a positive effect. Moving to a bigger town to be near a major hospital isn't an option. There is an "independent living' facility, with separate housing here in this little burg which I will investigate, but I don't know if the economics will work.

Wife is retired, and has problems of her own (which she could have taken care of had she gone to the doctor 6 months ago when I first suggested it).

My next magical trick is to see if I can find a doctor around here who will help me try http://www.davidwheldon.co.uk/ms-treatment.html I accept I have MS...I don't accept I've had it all my life, since the symptoms just appeared 5 years ago.

[Sue Pendleton]

Originally Posted by willingtocope

Yeah, I'm wondering also. Dr. seemed surprised when I told him the first infusion in July turned my legs to weak to support me. Its like the spasticity went away completely and I was left with no muscle tone at all. Same thing this time.

I am back to being semi-mobile this morning, but with great effort.

I do take an extra zanzflex in the middle of the night (since my wife can't help me out of bed in the morning), and that does seem to help...

I tried Zanaflex soon after it was approved. While it seems to help many people I have your reaction. At 2mg there was no effect on me at all. Took 4 mg on the day I needed to edit a bill going before the Maryland Assembly and when we got to Annapolis I went to do my standing transfer from van to chair with my husband's help and we about both went down. My legs went to noodles. Within 30 minutes inside my mouth was so dry I must have looked like a dog foaming at the mouth. You know that lovely glue at the corners of a very dry mouth? Really bad. Doc and I decided it was back to Valium time for my spasticity.

[Katja]

Originally Posted by hlh

But honestly.... looking for a cure is not going to be high yield. But optimizing everything around you to be functional, and following recommended treatments that are already known to potentially help people is a good place to focus your energies.

Originally Posted by willingtocope

I'm not going down easy, and I'll be damned if I'm going to spend those years being spoon fed because I gave up.

I'm sorry for you if you equate "optimizing everything around you to be functional" (excellent advice from hlh) with "being spoon fed because [you] gave up". That's just sad.

[willingtocope]

Originally Posted by Katja

I'm sorry for you if you equate "optimizing everything around you to be functional" (excellent advice from hlh) with "being spoon fed because [you] gave up". That's just sad.

I'm sorry...I didn't mean to come off that way. what I'm trying to say is this....

After I went to the Mayo, and they declared I had PPMS, they sent me to Univ.Of Iowa Hospital for rehab, along with a "don't expect to much". Before I could get rehab, I had to meet with UofI's head MS doc. Since it was such a huge place, I was carted around in a wheelchair...the MS Doc didn't even ask me to stand (I could still walk at the time).

He says..."well, the Mayo says PPMS...I looked at the pictures...I'm willing to say its not quite that yet, so lets call it SPMS. Doesn't really matter, I can't do anything for you. I've got 25 year olds to treat. Come back in a year. Learn to live with it."

I don't give up that easy. I'm tackling each new challenge that comes up...but...I'm not going to roll over and look for a nursing home.

[hlh]

Originally Posted by willingtocope

I'm sorry...I didn't mean to come off that way. what I'm trying to say is this....

After I went to the Mayo, and they declared I had PPMS, they sent me to Univ.Of Iowa Hospital for rehab, along with a "don't expect to much". Before I could get rehab, I had to meet with UofI's head MS doc. Since it was such a huge place, I was carted around in a wheelchair...the MS Doc didn't even ask me to stand (I could still walk at the time).

He says..."well, the Mayo says PPMS...I looked at the pictures...I'm willing to say its not quite that yet, so lets call it SPMS. Doesn't really matter, I can't do anything for you. I've got 25 year olds to treat. Come back in a year. Learn to live with it."

I don't give up that easy. I'm tackling each new challenge that comes up...but...I'm not going to roll over and look for a nursing home.

No one said anything about a nursing home. Actually, I am trying to keep you OUT of a nursing home. The more you tell us about your situation and your lack of support, the more borderline we realize you are...

So you never got rehab? The doctor never sent you to rehab? Well if they did, you need more. Go back. I'm sure your primary care doc will write you a prescription if you don't want to see the neurologist again.

And the neurologist actually said that to you? Did your report him? I find it hard to believe he said something so clearly cruel and discriminatory, but if he did you certainly must report him.

Of course you need a doctor (probably two... physiatrist and neurologist) that you have faith in that wants to fight for you. I hope that you can find this, but I realize that will be very hard in your small town.

But even more important - you need rehab, you need to optimize your house, you need to find a physiatrist (or a geriatrician) to get your medications optimized and to follow you more regularly, and you need to get as strong as possible.

Remember, this is a marathon. A person your age who has to call an ambulance a couple times in the last 2 months to help them get out of bed is unfortunately in a very tenuous situation.

You can do this. You can make things better. But you are at a time in life when everyone should be re-evaluating how/where they are living and this is not giving up. This is called being smart, and planning for the future.

Again, my father doesn't plan either and is stubborn like you. But of course, stubborness is a good trait to have when you are dealing with a chronic medical problem. It keeps you spunky, keeps you looking for care and good doctors, and at times... it keeps you going.