Neuro follow up.
 

Ok, first off I want to say that my annual appointment with the neuro went overall excellent. I wanted to get the positive established before going into detail. ;)

Well, in summary, he was shocked I stopped my medication. I explained some of the reasons why. To MY shock, after he mentioned Avonex (no, the needles aren't the entire problem doc!) he asked me if I'd consider going on Tysabri. :eek:

Ok dude. I did Copaxone for maybe just over 6 months, my last MRI shows amazing improvement and my neuro even went as far as to use the word 'healing'. I flat out told him I'd not consider Tysabri unless it was a last resort, and I'm way, way too early in my diagnosis and trying the DMDs to make that leap.

Anyways, at the end of the day he can't sit there and NOT endorse one of the DMDs. I know, that's his job. So I came to an agreement with him... if I develop new symptoms, or relapse, I'll go back on Copaxone. If not however, I told him, I'm sticking my guns.

If the Tysabri bit wasn't a shock, it was hearing him mutter "I was so sure it was MS I was looking at..." is he doubting his diagnosis, or is that his way of bringing up the medication subject indirectly (which truly I think it was).

At the end of it, he said he'd be praying for me and that he hoped I was 'One of the lucky ones'. He didn't want to hear anything about me eating low fat for a year now, but he's happy I'm exercising.

He's still blaming my burning mouth syndrome on the MS, and it probably is. I just hope I get relief! But it could be a long time coming.

So overall it went well. I'm just to call his office if I relapse or have symptoms that are new. Regular routine stuff. :p

Glad to hear the good news!

It sounds like you have a great relationship with him, Laura, so that's wonderful!

Just curious about the above ... did it kinda sound like he was doubting is dx, but then suggesting Tysabri in the same breath? If he had doubts, and you are doing so well, I wonder why he would even bring up Tysabri?

Cherie

Good going, Laura..:)

Haha, I don't know why he brought it up. Probably because he knew I'd done my homework and would flat out refuse Ty if I'd stopped Copaxone for the reasons I gave him. ;)

The Ty was discussed prior to him making the comment about the dx. I told him I didn't doubt his diagnosis of MS, which I don't. I just don't see myself at this point being very 'severe'.

Laura, after having done Avonex and then Copaxone, I was offered Ty by two Neuro's.

One Neuro I had before it was pulled off the market, and then by another Neuro after it went back on the market. This was a Neuro who was approved for the "Touch" program. :rolleyes: I said no both times.

I said I would volunteer to take MBP8298, but I got turned down for that in clinical trials because of my other auto-immune disorders, and I still had relapses.

So basically, I did no DMD's for two years. I stopped all MS medication too. I stopped off label drugs too, like Neurontin, Provigil, Amantadine, and Zanaflex. I even tried Lyrica. All off-label, but fine with MS doctors, weird huh? I felt shot at with needles and their symptoms, and doped up on drugs.

Then I went on another off-label drug LDN in 12-08. It works great for me.

My Neuro did say she was supposed to write approved for MS DMD drugs. I said, then why the other off-label drugs you have given to me? Hmm

She had my PCP write a script for LDN. :)

Laura, I am glad that you had control over what you chose to take or not to take. You go girl.:hug: They can offer drugs but it is up to you to make the final decision. There will be new drugs coming out soon anyway.

I am right behind you Laura. My MS MD has said Copaxone has done great things for me, BUT...I have some sx I am not sure I am willing to live with. He too mentioned that I could switch over to Avonex. I explained that I set a clinic record with liver enzymes on Beta, why would I chance that again with Avonex? He then told me that I qualify for Ty. I was thinking of looking into it, but I too feel that my disease progression is so many miles away from needing a Ty run in my life. I am 2 days away from my 2 week (authorized) break from Copaxone, and I gotta admit, I am seriously considering making it a month break. I am sleeping better, and while my eyes are still quite dry, I have had some relief.

If it were not for my DH, and loved ones telling me how much they love me, and want only the best for me, and want me to pick up that needle and keep shooting so I can have a good tomorrow, I would simply lay it down and walk away. I have loads of loved ones telling me I need to keep shooting. I am so torn!

I am glad you have good news and were able to stand up to your MD. I am seriously considering the same.

Dej, I'm no doctor, but I'm going with the 'you know best' theory.

If you take a month's vacation or permanent vacation from Copaxone.. you'll make the right decision I'm certain.

Glad you had a good followup Laura. :hug: What a nice doctor. :)