Not a question...just dropping by!

[zoefromsussex]

Hello all,

It just suddenly occurred to me that I hadn't logged in here for ages so I thought I'd see how everybody is getting on.

Also, for those of you who knew I was not on a treatment for a long time, I have started Tysabri! My second infusion is on Thursday & I'm daring to feel very positive.

I was very surprised by the first infusion. Kind of felt drained & a little sick for the first day or so but by day 3 I actually woke feeling amazing, full of energy and with a clear head! I certainly wasn't expecting a difference that quickly!

I'd love to hear how you're all doing & am wishing you all the best for this (almost!) new year :-)

[zoefromsussex]

Thanks for the replies!

It often strikes me as a strange thing to have so many options for treatment. Usually if you need treatment for a condition the doctor just dishes out a prescription and you get on with it! it's not always easy to find the right treatment with MS, is it?

The consultant treating me is an MS specialist and I couldn't be in better hands so the other benefit of Tysabri is that I'm monitored regularly. I felt it was the right drug for me because my relapses were every three/four months. The other patients at the Tysabri clinic need sticks and wheelchairs so it's made me realise how lucky I am to still be able to exercise and walk around freely.

Saying that, I'm feeling pretty rubbish today but I don't think it's MS related! There's some debate with my GP as to whether or not I also have Fibromyalgia. I think I do, she thinks fibromyalgia equals muscle pain and therefore is caused by MS. I'm prescribed Amitriptyline but don't like taking it so can't really moan about the pain ;-)

[anon07072023]

Hi, I'm checking in as well. Glad it's going good so far on the Tysabri. They didn't think it was a good fit for me with all my other medical conditions. I changed to Copaxone 3xs a week - 40mg, instead. It's much better than the daily shots. Hope everyone is hanging in there.

[kwarendorf]

Hi ZFS-

Thanks for checking in :-) I'm glad things are going well. I'm a Tysabri vet and loved the way it worked for me.

Kyle

[HVAC]

Glad it is going well. Having a good feeling about your treatment helps in my opinion.

Alex

[Corriel]

Hi there! I switched to Tecfidera about 9 months ago. Some lymphocyte issues but I think they are almost resolved now.

Having some muscle weakness issues that my neuro insists is not MS related. Waiting for results on a nerve conduction study and apparently I am seeing a hematologist/oncologist in June because my neuro noticed something  with my platelet count (although I am still not certain what since the level is normal).

Muscle issues seem to be resolved for now anyway after about 6 weeks so my fingers are crossed.

Glad to hear about the Tysabri working out for you!!

Corrie

[immisceo]

Thanks for checking in! I was wondering how things were going. Great news on the Tysabri. Sounds like so-far-so-good!

I'm still plugging away on my drug study. Nothing new to report MS-wise, but my weeks are filled with a lot more activity these days. I tutor OAPs in computer skills three days a week at three locations in town. Keeping track of the times/places is definitely keeping me on my toes!