I love Ty - I love that I don't feel like I have been run over by a truck every second day, I love that it doesn't make me sick, I love that for the most part, I am good enough that people don't think I am anything more than a bit slow/ungainly when I walk....most of all, I love it that now I can dance when I go on a girls night out.

I don't love that now, being on Ty for nearly six years (I didn't realise it was so long - a nurse friend of mine looked up my hospital records) I come under the 7/1000 category. NOT FAIR!!!!


What to do? I just don't know - after all.....'it can't possibly happen to me.....'

Holy moley!
Started my eighth year on May 25th!
Who'd have thunk it all those years ago that I wouldn't be cured yet! Jeez!
Luckily we have Tysabri!

Holy moley!
Started my eighth year on May 25th!
Who'd have thunk it all those years ago that I wouldn't be cured yet! Jeez!
Luckily we have Tysabri!

Hahaha

A paranoid person might think it was a big pharma money-making conspiracy....

Well you've got 2 more years! Isn't the standard line when you're diagnosed "well I expect they'll have a cure in 10 years.

I've just started my 8th year. I've lost count of the # of infusions...LOL

I know I've missed several infusions due to shingles. I miss my "old" life but I thank G-d for Ty and the things I can do that I couldn't do before Ty. Now if I can get my pseudo exacerbations under control life would be even easier.

I tripped and fell a few months ago. No broken bones or tears but, it's taking forever for the swelling to go completely down. The dr told me to begin normal activities but, every time I do.......and, I'm starting slowly......I end up in bed for a couple of days. It's so hard to sit in a chair without having my bad leg rest on another chair.

I really want to get back to California and see my grandchildren. We became great-grandparents 2 weeks ago and I really want to see the little guy in person!!!!!!!!! This is our first great-grandchild

Having my infusions last more than 1 1/2 hours seems to really help with the side effects. I still have them but they are mild. I wish all of the infusion nurses would be willing to do 2 hours. I'm going to talk to my neuro about it when I see her in a few weeks. I have no idea how the new infusion nurse is going to feel about it.

Ok......enough kvetching. I'm going to count my blessings and hope the new nurse is good.

Hugs,
Shayna

Hey Shayna -- my infusion clinic runs mine for 2 hours. I feel so much better when it goes in slowly. Stand up for yourself and ask for the 2 hours. It's not unheard of and it's no skin off their back.

Natalie, I have been insisting that the actual infusion last for 2 hours. The problem is now scheduling because the new infusion nurse only works part time I must now schedule my infusions around her days and times in the infusion room. There are only 3 recliners in a very small room......as well as the nurse's desk, supplies and the fridge. So, I now go for my infusions every 4 weeks but, it isn't always on my preferred day which is Thursday. I prefer Thursday because of traveling back and forth to CA to visit with my family. The infusion room is only open Monday -Thursday but, some days it isn't open all because there aren't enough patients to make it worth while for the nurse to come in to the office. There aren't very many infusion suites for Ty where I live. There is one on the other side of town but, it's an hours drive each way. That's better than the 7 1/2 hour drive to CA but, I prefer to have my infusions close to home.

The pseudo exacerbations have continued and my neuro and PCP ordered a lot of tests. The results are iffy. I may have Hashimotos. At this point I'm willing to continue taking synthroid and having regular blood draws but, my main concern is being able to continue with Ty. Nothing gets between me and my Ty...LOL. I've been on synthroid for almost 50 years. It's work well for me and doesn't interfere with taking Ty

I hope everyone had a great summer. We made it back to Ca to see our great grandson. He's so darn cute!!!!!!!

Hugs,
Shayna

I got #48 done yesterday. I can never remember the number unless I go back and look at the forum! Just checking in.

Hi Natalie

What is your JCV status? My neuro wants me to find another treatment as I am 2.406 - the last thing I want to do is find another drug (I don't like the options).

Cheers