Yes Riverwild coming over thebridge in just another month will not be easy.

No it was not an insurance isuue. Tysabri is only given in Fallmouth Plymouth Dartmouth and Boston and further locatins.. Fallmouth and Plymouth were closer but they said they do not accept guests and thats what they called me. Next closest was Dartmouth thankfully they accepted me they are fortunately easy to get to being right off the highway.

Take care
laurie f

Hi all, I had #12 today. It was at the general neurology infusion clinic and not the MS clinic infusion center (I see doctors etc. at my city's big med school). What a WORLD of difference. The nurse actually treated me like a person with feelings!! They were all so friendly. They offered to go get me and the other patient lunch!! I only had to wait 10 minutes instead of 60-90 minutes. It was quiet and unstressful. I think the last place was so horrible that it was almost traumatic to go (you've read my other posts on this). I can't believe how calm and not stressed out I am. I get to stay at the new place permanently. I'm feeling a little cruddy but nothing like before. The slower infusion is much better. Oh yeah and the new nurse said she could slow it even more if i need it--no hassle and complete support. Whoohoo! I can't tell you how happy the new place makes me!!

This sounds MUCH better Natalie!!

My infusion center is a general infusion center even though they call it an oncology center. They are doing way more than oncology these days. It's still VERY small and personal, and I don't think I would like a large infusion center!

I'm so glad to hear that things are getting better for you. You have fought enough and you need to relax and let Tysabri work it's magic without having to deal with problems with your infusion center every month!!

Today i recieved an emaol from Touch program telling me they are still working on finding me a site to do my infusion in in MA. Funny cause Thurs will be 3 weeks that I had m infusion in MA. I called to tell them that they gave me the place and everything else worked out. My apointment was 930 am Thurs and I got my approval call 3pm Tues. I had called them weekly till that call.

Oh well good thing I didnt wait for them would be very late.

Take care
laurie

Riverwild I am in Ptown and it is the Sagamore bridge. Been here 25 years summers.

Thanks Laurie
Strange how even after three years, MSActiveSource STILL is slow as molasses! They really need to get it together!!!!

Lucky you to be summering on the Cape! I used to go fishing at Race Point. Living so close to the Cape, we were there every day we didn't have to work, unless we were further down the south shore or RI shore.

Sagamore or Bourne, it's still a hassle to get back and forth!

Infusion #3 last Monday..So far doing well ~ feeling MUCH better than I was last week. Also, going to an ENT 7/1 to see if they can help get rid of this dizziness. I've tried everything else..All in all, I'm good!

Glad to hear it all went well, Polar!

Sorry to hear you are dizzy! (somehow that just looks WRONG in print!)
That was one of my worst problems when I relapsed.

Hope the ENT has an answer for you!

I also had my infusion on Monday. It went off without a hitch. I think it was my 27th? It was my two year anniversary on Tysabri, having started in June 2007.

I'm feeling fabulous. Though this year the heat is bothering me more than last year, but I'm taking Provigil and wonder if that has something to do with it? Everytime you add another medicine to the mix there can be changes.

We're closing our small business end of this month. It has been eight years and the time is right. I'm amazed we found a buyer. I feel like God had his hand in that and I'm very thankful.

I'm opening a new family business in August with our sons and DH is even going to help out. He's our official fleet manager, lol. I'll be working from home and I'm THRILLED about that.

We're all going on a much-needed vacation next month so I'll get some R&R before we get going in August.

Hey Wiz, Congrats on all fronts!!

Glad to hear everything is going well, Wiz! Yay for # 27!!!

That is wonderful news about your business selling so quickly! You've been working hard on it for a long time and after all the stress and strife, it's so nice to hear it's paying off and that you can be out from under it all! I bet you are really going to miss your co-owner's spouse, aren't you...

I'd post on my experience with heat and MS but I can't because it's been 50s and 60s here and rainy for weeks now!

I also had # 27, yesterday. No problems, no concerns.

I met with the neuro afterwards and he asked why I was yawning. I had to tell him I had been up since the day before at 1:00 p.m. He wanted to know if I was taking provigil to get me through it and I hadn't had any for several days. He asked me to rate my fatigue and noted it was one of my chief complaints when I first saw him. I rated it at a 6 at that moment, even after being up for so long! I finished my appointment, went grocery shopping, and stayed up until 9:30 pm last night!!!



He didn't have any further information yet on the newest PML case confirmed June 10th outside of US with 35 infusions done.

One report has it being a person in France, but they didn't start infusions until spring of 2007 so I don't know whether it's actually France or Germany/Sweden. Germany and Sweden started their infusions in 2006, so it would stand to reason that it was one of those countries, but it also could have been a person from France who started in one of the other two countries before Tysabri was available in France.

I do have information that says the person is doing well after PLEX/immunoabsorption treatment and mefloquine, but is at the peak time of risk of IRIS and the treatment of IRIS also requires high dose steroids, so they may be back in hospital by now. The patient was reported to be ambulatory with some left sided weakness and in rehab for that.

I'll post if I hear any more.

Hope everyone's doing well!! I'm praying for SUN! (this as it's pouring out yet again!)