Pain Pain Pain

[Nicoly3467]

Hi-I have not written in a while. I had a minor outpatient surgery 10 days ago and my Tysabri IV infusion got pushed off for 2 more weeks due to risk of infection. So now it has been 5 weeks since my last infusion. I get this done monthly. I am experiencing a lot of nerve pain in legs, more fatigue and numbness and it's more challenging to walk around even though I walk. My calves, toes, or legs are numb at different times during the day and feels like someone is squeezing them at the same time. In addition, to prickly, burning sensations. It is terrible! I see what this medicine does for me when I do not take it every 4 weeks. I believe my MS really tries to be aggressive when given the chance, however, the medicine sets up that border as a protection.

This feels like a relapse but I think it's because I do not have the medicine in me right now. There could be some inflammation going on-it's possible. It is like a diabetic person without insulin or a cancer patient without proper treatment.

This disease causes so many problems. I am just grateful we live in a 'day and age' where there are medicines to help MS or otherwise these symptoms and pain would be unbearable to live with everyday. Thanks for listening! I had to vent.

When I take Tysabri regularly, it gives me so much more quality of life. I still have daily challenges of course, but not like this.

[mdok]

reain pain pain

My first year on Tysabri, there was one time I went 5 weeks between doses because of holidays at the end of the year, and the Infusion center being closed when my regular infusion was due. Going that extra week really made a difference in how I felt. Another patient and I who had our infusions the same day, adjusted our infusions twice from Fri to the following Mon, so we didn't go an extra week. We adjusted back to Fri. the next month. This really helped. The last week before an infusio, I felt more blah, not a flare, but less able to walk smoothly and more achey.