Just dropping by to say hello...

[zoefromsussex]

Hi everybody, I haven't been online recently because I've had my first period of time without any symptoms other than blurred vision. It's been sooooo lovely and I've made the most of it as it's sure to change! I thought I would just check in and say hi though and see how you guys are all doing? Oh my other reason for posting is to say I am STILL waiting to start copaxone despite seeing the neuro back in early May! Basically, he's delaying things for some reason and I'm battling to find out what's going on. As those of you who have followed my posts will know, I don't get on with my neuro at all and I've been referred to a new one but am not likely to see him until the end of this year at the earliest. Has anybody else experienced a huge wait to start their dmd?

[bubbles_04]

HEY Zoe!!

Nice to see a message from you, glad things are looking up! I am surprised you haven't started copaxone yet. I was just thinking of you the other day and wondered how you were getting on with the copaxone. I've been on it almost two months now and the good news is its not all that bad for me. No site reactions and I don't feel the injection, just a little stinging after.

As for the inteferon I feel in the medical community there is a general feeling that it is a stronger medicine than copaxone. I say this because I had been on copaxone for 1 month and got my first ON attack and it was minor. My Neuro said he wanted an MRI and if there was a lot of activity we should switch to an inteferon. I had my brain MRI on thurs, I hoping for no/little activity since the last one. I like copaxone.

Sorry it turned out a bit longer a message than I wanted. Glad to hear from you though Zoe, keep us updated! Hopefully that copaxone will show up soon :)

Hugs

Kat

[zoefromsussex]

Thanks very much. I may have spoken a little soon as have had two days of  awful fatigue & extra blurry vision! Anyway, I managed to spk to my ms nurse today and she is chasing things up as says it should not be taking so long. She said she'll see me a month after I start and the new neuro may want to get an mri done as I have quite a lot of activity going on. She said we'll see how I get on but they may prefer me to try an inteferon at some point. I'm not too sure why as I thought copaxone was just as effective!
So, that's my news! All the best to you guys x

[saucygrl]

Good to hear you're doing well Zoe!  I also had to wait a long time to start my DMD.  It was caused by insurance issues waiting for Tysabri which was eventually denied.  We decided to use Copaxone and although I kept telling my neuro I was having really bad reactions to it, he wouldn't listen to me.  I switched neuros and have my second dose of Tysabri next week.  Hopefully seeing the new neuro will also really help you!!  Hopefully you keep feeling well!

Chris

[JaneK1975]

Hi Zoe! I'm glad to hear you're in a bright spot, but sorry to hear about the DMD delay. I'm in the US, so the process is probably a little different. My neuro wrote the script in late December and I had my first shot on February 2nd. My wait was mainly due to the logistics of delivery and scheduling a nurse visit.

I hope your neuro clears things up for you ASAP, and ultimately you end up with an even better neuro.

Hugs,
Jane