Awww darn it. I am so sorry Nat. I hope the docs have a super AB that will knock this infection out!!

Maybe God doesn't want you back on TY?

You are in my prayers. Please be well soon.

No advice here for ya Nat, just hugs and hopes that the stupid infection goes away sooner rather than later and that you get back to Ty.

Natalie, I am so very sorry
Thinking of you and wishing you well..
Linda

Hey guys!

Guess what? I'm getting my Tysabri infusion right now!! Yeah!! Yeah!! Yeah!! I didn't want to share the good news earlier because I didn't want to jinx myself until I was actually in the chair hooked up.

It turns out I only spent one night in the hospital because they discovered that what they thought was a giant painful abscess on my heel coming back from the original infection was......well they have no idea what it was! It disappeared within 24 hours. The docs are extremely puzzled because they were talking bone biopsy (which they hadn't done before), more antibiotics etc.

But the MRI came back negative for bone infection and looking much better than it had last month during the full blown tissue infection. This time, all in 1 day, the pain disappeared, the swelling went down, the redness receded, the black crust disappeared. It literally was a miracle! . They still have no idea what it was. After looking at my foot today they gave the okay for Tysabri.

So today is 12 weeks exactly since I last had Tysabri (with one blast of steroids 4 weeks ago to act as a bridge). So it looks like I am back on my regular Tysabri schedule. Life is practically normal again. I am ecstatic!


What an ordeal this has been over the past 9 weeks. Ugh. Say NO to pedicures!

YAY 4 Natalie and MIRACLES

Yes, YEAH for miracles. Although I realized it was 13 weeks with no Tysabri, with the steroid blast at week 9. Yikes!

And my body must be reacclimating to the Tysabri because I feel super cruddy the day after (headache, malaise, digestive issues) like I would sometimes get in the beginning. But I'm not complaining!

I came across an abstract from the annual meeting of the American Academy of Neurology (AAN) about a study done on patients who switched to getting Tysabri every other month.

It's quite interesting! 42 stable patients who had been on Tysabri for 2+ years or more switched to every 8 weeks. Over the next 2 years they stayed on the 8 week plan getting an MRI every 6 months to chart their disease.

3 of the patients couldn't tolerate the change because of MS fatigue. The other 39 stayed on the 8 week plan and had no relapses or changes on the MRI over the next 2 years. That is 92% of the participants stayed the same!!! This is remarkable for several reasons.

It looks like every other month is really just as good as every month!! This could save people money. I wonder if it reduces PML risk? It definitely lessens your chance for infections which is why I did it. I stopped getting UTIs when I switched to every 8 weeks. I've been on the 8 week plan for 2 1/2 years now. No relapses and no MRI changes. . Again, 92% STAYED THE SAME.

Of course Biogen wouldn't necessarily be happy for people to switch because they would lose BIG dollars.

http://www.neurology.org/cgi/content...4-939fc00108ad

I had my 74th infusion yesterday
Linda

Yay!! I had # 71 on Nov. 1st! Still no problems or concerns.
Saw my neuro afterwards, he says the new schedule for the Stratify test is every 6 months now, not one year as we have been doing. I didn't have time for the blood draw that day so I will have the draw Nov.29th before my next infusion and get results a few weeks later.

He said that there was a patient who previously tested negative and came down with PML, and when checked for the antibodies, the patient tested positive. They went back and re-tested the sample from the previous draw and it still showed negative. Just a reminder to us all to be vigilant, that they still don't know how people are exposed to the JC virus. I was warned yet again to report ANY signs/symptoms that last more than 24 hours. any weakness/numbness/vision problems, etc.

I also turned down the MRI he wanted to schedule. I can't afford the 10% co-pay that my rat#$% insurance wants, even though I am through my deductible and co-insurance in January every year. Since I haven't had any major problems, I don't feel it's necessary and I haven't had any new or enhancing lesions since I started Tysabri. I'll do one if I have problems, but not for a looksee in search of things that can't be fixed anyway!

Hope everyone's doing well! We survived the storm with only minor wind damage, didn't even lose power. My prayers go out to those who are still in the dark and out of their homes.

Hi RW, I am happy for you - and me
We are on the same infusion schedule as mine was Nov 1st, also.
My neuro doesn't believe in getting MRIs often. I will get one in a month and the last one was over a year ago. I am lucky that between my 2 insurances I do not have a co-pay
Thank you for the info. I do pay attn to "me"! It's not good to become lax.
I didn't know you live in the East-glad you were not affected. I am so sad for the devastation of all these people and I feel for the animals, too.
Linda