Thank You for thinking of me! Funny ..I thought about you that afternoon also. Wow......It's almost like taking someone with you!? You will be in my thoughts on the 19th also.
I am feeling Good. A month off Rebif has been WONDERFUL!
With physical therapy and the TY I am really feeling positive.
You will never know, what an influence your posts were to me!
I'll keep in touch.......Barb

More hope for those on TY
 

Before going on Ty I was told I would never regain use of top of my left leg like before and would always have same prob there. Guess what - leg is almost back. I would say 95%! This is not something TY is supposed to do. But, it has happened to others and now even me w/all my prob. I think this sayes a lot for TY.

Yes, I am in an exacerbation - but I never came out of the 1st. Ty is not supposed to pull one out. TY is not supposed to do anything much for 1st 6 mos. But, it has on me. I can even touch my leg and have it fell almost like the other. All I have is very minor dif. This exacerbation is bad, but it is not as bad as it 1st came on. I can walk... and I could not w/1st. I do not think TY put me in this relapse. I was going into it before my 3rd infusion.

In ref to staying on TY and past sides.

I stayed on Ben for 1st 24 or less hrs this mo and had no sides. I even think I have found a reason for sides - the swelling... I had. I'm allergic to cheese. I usually don't have anything but swelling an itching of feet and hands and that is only when I eat tons. I think TY may have increased my allergic reaction. Hence, I ate no cheese last mo - took ben for only short time just in case and had NO SIDES.

My advise to those consideing TY

Just stay 100% away from anything you have ever had the most minor reaction to. Most do this anyway. I just love cheese. Based only on me so far -- if you do -- I think you will be fine. I never even considered this till it just occured to me one day.

I'm had antibody test - will get results this week. I'll have liver later this mo or maybe when I go to GP b/c I'm sick. I have feeling all will be fine. I am usually right with my feelings - so we will see.

I remain very pro TY!

Sorry for typos... I'm sick (fever and such) and not cking.

A Graphical Update on Progress: 14 Infusions of Tysabri.

1) Walking endurance has decreased from the high, but is still better than before Tysabri.

2) Balance has increased, though "wall-walking" has become a crutch, and it may not be necessary (but I don't want to risk the chance of a fall).

3) Fatigue is less of a problem than before Tysabri.

4) Ankle movement has decreased, but is better than before Tysabri.


Notes:
* No UTI's this month
* "Wall Walking" is more common for stability (ugh)
* Tired more often than a few months ago

DISCUSSION: None yet. Eleven more infusions will provide enough data for sound statistical analysis. So, at this point, these graphs cannot be used to show a statistical trend.

CONCLUSIONS: Overall, my level of functionality is a little better than where I was before I stopped Avonex. So this little bit of improvement is a BIG plus. Hence, it appears that Tysabri is fighting to stabilize my MS. Of course I wish it was better, but improvement is not the intent of Tysabri. Stability is the intent.

-Vic

I've had my 4th infusion and haven't noticed any real improvement in my symptoms, which is fine by me (I guess :)).

BUT I truly believe with all of the carp I've been going through lately, Ty is the reason I haven't had another full-blown relapse :D!

Well, it looks like I am joining the Tysabri club. I saw my new neuro today at the MS clinic. I couldn't tolerate interferon or copaxone. So she is putting me on T. The paperwork got started today. I'm not too nervous I guess. Maybe a little? :eek: They have 150 people at their clinic on it. Any starting advice? I assume they will probably tell me everything I need to know.

One other thing -- they said they test your blood for the JC virus that causes PML. And I will have this JC virus blood test done every 3 months. I guess this is a new safety measure going? Has anyone else had this done? The doc. said that 1 in 5 people test positive for JC virus but you can still go on Tysabri if you test positive -- they watch even more carefully.

Hi Natalie,

My doctor never mentioned that, at least not yet. I need to have a liver panel every three months though. Good luck with Tysabri! :)

My update, one year on Tysabri.
 

Yesterday I had my 13th infusion and I've been on Tysabri for a year. Overall, I'm very happy with it, especially comparing it to the other A,C & R that I was on before. I have to admit, I didn't enjoy the shots though I tolerated them.

I had my quarterly liver panel and all levels were normal. :) I feel good today. It's almost like I have a sense of well-being for a few days after the infusion, like I'm very comfortable with myself, if that makes any sense.

My walking is much better compared to a year ago. My bladder issues are gone completely. About 6-8 months ago I'd had some retention issues and I was prepared to self-cath, I even have the stuff to do it. But I haven't had to use it once. :)

I still seem to have overall lower blood pressure and my PCP-cardio doctor had me stop my Norvasc BP pill to see if I go to normal. I'll be so happy if I can get completely off the BP meds! I have something hereditary called primary hypertension so there was no rhyme or reason for it, it just happened. I haven't had a relapse for the past year, or if I did it was extremely mild. My annual MRI looked excellent as well. The neuro said it looks like it has even improved somewhat.

I still have a lot of fatigue, but after seeing the PCP this week and telling him about my low BP readings, he thinks that might be a big part of it because I also get lightheaded and feel faint sometimes.

Today at the office it was hot and humid, about 80 degrees in here with about 95% humidity. I wasn't doing anything but working at my desk, but I was ok with fans only!! Someone else suggested turning on the AC! Usually I turn it on the first hot day and it stays on all summer.

I still get weak from the heat if I exert myself at all, but I guess I can deal with that. :) I noticed today that I mix up my words more the day after the infusion, and I wasn't the only one that noticed. :cool: I suppose it's partly because the infusion makes me extra sleepy?

Yesterday I scared the new infusion nurse I think. :o I must have been one of her first infusion patients at the clinic if not the first. My veins were being shy because I hadn't had lunch yet so she couldn't get the needle to go in correctly. When this happens, I get faint. I must have looked terribly pale. She checked my BP and it was 60/40. She looked so scared, I felt bad for her, but that happens to me if there's an infusion incident. I used to pass out when I donated blood. :o I did my best to console her, the poor girl! Next month if it's a lunchtime infusion I'm going to eat on the way there so maybe it will go easier for her. I know she's really sharp because I could just tell, and she's worked at the ICU in a big Chicago hospital as well. I just hope she doesn't dread seeing me walk in the door from now on. :o

Oh well, I think that's it for me until next time. :)

Yay Wiz!! Congrats on a full year! Isn't it great to be able to say "no relapses"?:hug:

Onward and upward my friend!!

I've never had a blood test for JCV.

You and your doc should know that about 80% of the world population carries the JC virus in their kidneys and bloodstream. It's when it breaches the blood-brain barrier that it becomes a problem and to test for THAT, you need to have an LP and have a good technician who does NOT contaminate the spinal fluid with any blood from the stick.

There are clinical signs that will show up if someone has PML. They can mimic the signs and symptoms of a relapse. Having an MRI and a radiologist who is familiar with the different shape and presentation of the lesions associated with PML is important too. Unless a radiologist has seen PML MRIs they may not be familiar with the presentation of PML. Most of them see it when they do MRIs on AIDS patients with PML.

My neuro told me that if there are ANY sudden changes in my vision, thinking, and usual AFFECT that I should call immediately. That is the sum total of PML protocol at the beginning. What comes after is a whole different ball game. It would be MRI, LP and whatever else comes, including ceasing Tysabri and more than likely a plasma exchange to rid the body of Tysabri. It is my understanding that the PEx would only take place if the person was within a certain amount of time since their infusion.

Today was the two year anniversary of Tysabri's return to market. There are 30,000 people +- on Tysabri worldwide with NO incidences of PML reported since it's return.

Good Luck and please let us know how it goes for you!!