See your Neuro and have that test, Lynn. Any change for the worse while on TY is a red flag.

Hi Lyn!
Are you taking anything for spasticity? Does it help with the problem you describe? Have you increased your activity lately? Have you had any back trouble lately?

I'm asking because these are the first questions your doc is going to ask. It's entirely possible he will also call for a full brain/spine MRI, not only to check for enhancing lesions, but also for sciatic nerve impingement or lumbar/sacral spinal vertebrae shifting or breakdown.

I had exactly what you describe a few years ago and I assumed it was MS. My neurologist told me never assume it's MS, rule out other factors, and after MRI, I found out it was sciatica from a bulging disk in my spine. I had to do some exercises, take anti-inflammatory drugs for a few weeks and change the way I was doing some daily activities. Sally gave good advice, always let your neuro know when something changes and lasts more than 24-48 hours.

Now that the test for anti-JC antibodies has been approved, it should be available to everyone on Tysabri. It's a simple blood draw and results are available within 4 weeks. If it's a concern, your neuro should be able to order the test for you.

Let us know how it goes for you!

Hi Sally and Riverwild

Thanks for you answers. To my knowledge, I haven't had any back issues at all, and I know I am not on any meds for spasticity. I do think that the symptoms are diminishing in the last few days, and have become intermittent.

The bottom line is, it isn't painful (just stiff and sore) - although I am sure that it is increasing my fatigue. My Neuro lives some distance away, and I can't get time off work - nor can my husband (who drives me everywhere) for a long appointment. I am supposed to have a Ty infusion next Wednesday so I know I would advise anyone else to make that call.

I am due to see my Neuro at the end of March, and have an MRI - so that is another reason why I have put this off - thinking if it is MS, I will just have to 'grin and bear it' because it is not that bad and it can wait.

As for the JC test, I have been told that there needs to be at least 20 people in my area get it done at the same time to make it financially viable (I am kinda remote - outback Oz). It will happen and maybe be organised next time I see him (the Neuro).

Thanks for the advice though. You have both given me lots to think about.

Cheers

Lyn

I just had infusion #1 today. No adverse reactions. Noticable fatigue about 3-4 hours after adminstration at work today. I think it's probably due to the increase in sodium levels (due to tysabri being combined with 100 mg of sodium chloride - per the tysabri prescription foldout). So, I drank several glasses of water at work throughout the evening and my fatigue disappeared! Happy!

Nice going Neuryoman..

neuryoman, good luck on your Tysabri journey and glad that #1 went well
Linda

Had # 27 or so today. I must say Tysabri saved my life. It's by no means a cure, but it sure as heck slowed progression & gave ability back to get in & out of car with wheelchair myself, push 300 miles, swim 3000 laps.
No nightly shot (Copaxone) anymore is worth admission.

I had infusion # 63 last Thursday. No problems, no concerns.
So very nice to be so very boring!

I'm entertaining suggestions as to what to do to celebrate the 5 year milestone in May!

Hope everyone's doing well!

I want you to take this with the best possible meaning, River. It's been nice not hearing from you.

I have been wondering what the pml odds are after 4 years. I found out that between 48-60 infusions it is 1/800. I was happy to find this out

I will set up an appt for a private jcv test since I have been + and - . I will be very happy to find out that in 2010 I had a false positive-here's hoping !!

I now get a yearly MRI as my neuro wants to protect the kidneys from the dye. He believes to get an MRI if sx warrant it.

I really like my neuro I had one in AZ I liked (she still wasn't as well informed as I wanted) but, this is the first one in CO and really good!

Linda