I haven't used Valium or any other benzodiazepines for any thing. I try to stay away from meds as a whole, but the spasticity was really getting to me and interfering with daily life so I took the advice of my doctor ( and one of our valued posters-Thank You MBSews!) and decided to just try the tizanidine before I went to sleep. I was having spasms that kept me awake at night. The tizanidine relieved them and continues to work as well now as it did the day I started it.

I held off on the baclofen for as long as I could, but when the pain started interfering with my daily life, I started on that. I have gone from 10mg 3xday to 20 mg 3xday. There are days when I am ok and I don't take the full day's dose. There are times when I do it all. So far it is relieving the spasms for me and my doctor is fine with me taking it as needed.

It doesn't work for everyone. I am sure others will chime in with what has worked for them. The whole point is to accept that sometimes meds DO help and to work with your doc to find one that works for you. Medication can make a difference as to whether you walk through your day like this or like this ...

Edit to add that joint pain is a side effect of Tysabri ( contained in your drug leaflet included with vial of Tysabri in box-Ask for the box and the vial!)

Hope this helps!

Sorry to have not posted in awhile. I had posted about the downhill slide that I thought might be connected to Tysabri - but it wasn't. It was a major excerabation. My neuro admitted me into the hospital, ran three MRIs and saw a lot of progression and enhanced lesions. He put me on IV solumedrol for 5 days.

After much investigation, he did tell me that he didn't want to change the Tysabri schedule. I was released from the hospital on September 19 and had my second Tysabri infusion 9/26.

I am getting my strength back following the steroids and I had no issues with the Tysabri infusion. I did not pre-medicate this time as the Tysabri nurse chastised me last time (even though my neuro wanted me to).

I am looking forward to great results from Tysabri. Thanks for all who gave me feedback!

I get my infusion tomorrow, I'll update then. BTW, I'm going to let them know that I want it every four weeks from now on, even if a different doctor needs to check in on me.

My appt is at 11:15 am, and I can hardly wait! I even packed us a lunch to get us through until suppertime.

Glad to hear you're on the comeback trail! Please let us know how it goes for you!

JJLL,

Since this is intermittent (and perhaps a side-effect of Tysabri or some other med), I'd suggest that LL keeps track of the meds used to see if this the joint pain follows a pattern.

I'm not sure why my doc and pharmacy think joint pain from an allergy to meds is serious business, but I am not even permitted to take Tetracycline any more for that reason.

If you find there is a pattern, i.e. 2nd week after infusion, or day after taking some other med (each time), then I would definitely bring this up with LL's doc AND neuro.

Cherie

I had infusion #18 today. It went well, I dozed a bit as usual, then took a good one hour nap on the way home as DH drove.

I'm getting another MRI next visit. My doctor wants them done ever six months. I think he said it's recommended to be done that frequently.

I'm going to take it easy the rest of tonight. I work the next four days in a row now.

The doctor said I should keep doing as good as I am because it makes him look good. He read my blood tests I had done recently that I had faxed over to their office. He noticed that my cholesterol was kind of high at 217, but then saw that the good cholesterol was 90 and the bad was low. So it's a really, really good ratio.

I mentioned to the doctor that I felt tired the past week and that it has been over five weeks since the last infusion. I think it was just a scheduling thing at their office and I don't foresee it happening again.

So, all in all a very boring (but good) report.

BTW, yesterday I mowed the lawn and raked, then burned the yard waste, about 2.5 hours outside in the 68 degree weather!!!!

TIME FOR ME TO END TYSABRI

Why?
Biogen has been great to me, buth the infusion center costs have gone through the roof.

After a 20 minute meeting with my neuro-team, we have agreed that it is time to find a way to resolve this problem.

Even though I have insurance through Anthem Blue Cross of California, they have not paid for my infusion center costs to the point where it is still a viable option.

MS treatements and insurance premiums have cost me over $110,000 over the past few years and I have said finally that enough is enough.

Just by chance, after my meeting with my neuro-team wherein we made a decision to switch to Rebif, the Rebif representative happened to walk into the office and provided me and my team with the paperwork to provide Rebif to me for one year at a cost of $51 per month. That will save us thousands of dollars per year.

So, although my Tysabri journey has come to an abrupt end, my Rebif journey is about to start.

Tysabri Summary - 18 Infusions:
(a) Fatigue - greatly reduced (good)
(b) Ambulatory abilities - declining (bad)
(c) Vertigo frequency - low (good)
(d) Ankle movement - low (bad)

-Vic

Aw Vic,

I'm so sorry you have to stop the Tysabri, but I understand completely. There's no way I could have it if it cost that much either. Our medical costs are nearly $10k per year as it is, but it would be hard for us to pay much more.

That said, Rebif is an excellent med. I liked those shots much more than either Avonex or Copaxone. I have a problem with depression so Rebif didn't work out for me, but the injections themselves were easy to tolerate.

I hope you'll get good results with it, and I'm glad you and your DW are going to save a bundle of money too.

Wiz,

Rebif should work fine for me. If for some reason it is not tolerable then I am open to anything else.

The funny thing is that taking shots every two days does not bother me...it just reminds me of the good old days when I was using Avonex. ~LOL~

I already miss the great nap that Tysabri provided, however!

-Vic

Sorry Vic.. Another door has opened, though..

Consider adding LDN to your gunbelt??