I must stay the hour after but minimal saline-I guess only used to flush the line. I also get different protocol with blood pressure and temperature takings ?? Who knows (I wonder) what really needs to be done, other than us paying really close attention to our own body and sx ??


Wishing us all WELL
Linda

Had my infusion yesterday, #29 I think.

It went fine but had a bit of blood gushing when she took out the needle. She always apologizes profusely for that if it happens (maybe 3 times in over two years?) but it doesn't bother me at all. I'm just glad to get the meds and head home in an hour lol.

I had stopped taking Trazodone for a sleep aid but had to add it back in this past week. The Provigil can keep my mind intermittently active so if something wakes me at night, my thoughts start revving up and it can take me an hour or more to get back to sleep. It doesn't happen when I use Trazodone. But it seems to increase my cog fog until mid afternoon so I'm using it every other day to see if that works out ok. It's a very old and cheap drug and good for MS patients to use as a sleep aid, that's why my neuro RX's it.

Hi Wiz--glad your 29th infusion went well! I took trazodone many years ago for sleep problems but I had to stop b/c it just made me such a zombie in the morning when I woke up...it took awhile just to get going and I had drug cog fog pretty badly. Hope you can get some good rest!

Thanks for the info Natalie. I might ask the neuro next month for something different, or just use nothing at all. I need my morning energy or else I get nothing much done during the day.

Howdy from Vacationland!

I just waved bubye to the last of my 25+ family members who have been here on vacation for two+ weeks. I have to go back and clean the place up and haul out bags of laundry and trash. Weather is 90 and sunny! (big change from the 55 days of rain in June/July!)

Left the island of love for my infusion (yes Wiz, #29!!) on the 13th, as usual, no problems, no concerns, in and out 2.5 hours! They were prepared for me and my infusion started within 15 minutes of entry!

I actually needed that "kick" this month, I think there was so much activity and so many people that I used up my energy stores before my month was over. I feel better today than I have in two weeks as far as energy and spazzing goes! I had to increase my Baclofen during the day for the first time since winter. I was down to one dose late in the day, but I went back to the noon dose cause my legs were on their own vacation, it felt like they ran miles by noon and the spasms were killer!

All in all a good vacation, but I am looking forward to a few days without diapers and screamers before work starts!

Hope everyone is doing well!

Some good news today! Had an MRI this morning & saw my neuro after. He was very happy with how it looked. Told me he'd been worried since my last MRI in Feb looked so "dismal" (glad he didn't use that word when I saw him then!). This scan showed no new lesions, no inflamation, some permanent scarring, but several disappearing ones, too..
Looks like the Tysabri is doing what it's supposed to!

Oh YAY Polar!

There's nothing like that first MRI that says it's working! I'm soo happy for you!

That's great news Polar!!! I'm very happy for you!

An update about the Trazodone: I'm back to taking 50 mg each night and I get good quality sleep. I'm taking 100mg Provigil twice a day, one in the morning and one at about 1-2pm or so. I'm doing pretty good with this. I am sort of groggy in the morning but I can't expect perfection at 51 years old and having MS, can I? lol

I have been trying to exercise more to keep my strength up and that helps my energy levels too. Today I'm buying a Nerf football and a regular basketball to get some variety with my exercise. I always feel so much better when I get moving regularly.

Polar: Congratulations!!! It's nice to get good news instead of bad news! I am so happy for you.

Wiz: Glad you are sleeping better. Wish I could say the same thing about my own exercise plan!

Well, no exercise Sunday through Wednesday. Today I'm going to do three types to get caught up (at least I think I will, lol.) It's easier said than done. I definitely have more strength with the Tysabri though, so when I do exercise, I seem to be stronger and get more benefit out of it.

Update from earlier today:

I bought a new basketball yesterday. I bounced it down to the park, 1 1/2 blocks away, then shot hoops for nearly 20 minutes. What a workout!! I bounced it back home because it was getting a bit warm out. I worked in the garden pulling weeds and putting rabbit fencing around my moonflowers so I might actually get to see them bloom this year. That took 1 hour and 40 minutes. It was lunchtime then so I was toast.

I thank the good Lord for Tysabri. I deal so much better with the heat and gardening is nirvana for me.