Forced Into Tysabri Rebound
Hi. I'm new to the community, but not MS. I was raised with it. My mom had it. She wasn't as lucky as we are. She was diagnosed back in 1976. I was born in 1971. So I was able to diagnose myself before I even saw a Dr. But I was officially diagnosed December 1999. I've been lucky, or just not willing to quit because I am still able to walk unassisted. I just look like I had a little too much to drink. It could be worse, so I was thankful for that.
Started on Tysabri
I did eventually start having some issues. So my Dr. recommended Tysabri. I was scared but finally decided to go ahead. It was great. I was so glad that I went ahead with it. I was starting to walk so much better. My energy was up. I was going non stop. Well I was actually afraid to stop. I was even considering going back to work.
Transferred to another neurologist
But, my Dr. moved. I was transferred to another neurologist in her office. No big deal. I mean she is in the same office. So I figured business as usual. Then it was time for my next infusion. I went to the clinic. I sat there for about 30 minutes. Then the receptionist asks me if I had an appointment. I said yes. She looked me up. Nope. No appointment scheduled. Well I was scheduled until it was canceled. So I called my Drs office. I was told that Dr wanted me to get blood work done before my next infusion. No biggie. I got my blood work done then went to schedule Dr appointment so that she could go ahead and get me going. In fact the clinic was able to take me the next day. Well, not that easy.
Forced to wait and started going downhill
I was lucky enough to get a grant with the help of Above MS. Mind you this is all new to me. So apparently every 6 months Dr. needs to resubmit paperwork to continue infusions. Well, my Dr. Was not willing to fill out paperwork till she saw me. Ok so I go up to the receptionist and ask her for the next available appointment. She says ok so the next one is in 3 months. NO!!! So I was forced to wait. Then I started going downhill. Worse than ever. I have never struggled like I am now. I started emailing my Dr. I put it to her this way.
Has anyone else stopped and then re-started Tysabri?
If I was a cancer patient and she inherited me would she stop my cancer treatment until she was able to see me? She never really responded to me. She always had her nurse respond. Then Covid-19 happened. So my Dr was able to see me sooner via virtual visit. That next day I was scheduled for my infusion.
I'm sorry for the long story, but I'm scared to death that even though I am back on Tysabri I haven't gotten any better. I feel like I'm getting worse. So my question is is there anyone that had stopped Tysabri then started back up again? If so how were your results? I had 6 infusions then I missed 3 months. And it's all been bad since then. Is this just a minor set back? Will I eventually at least get back to where I was?
How many specialists did you see before finding "The One"?