View Single Post
Old 07-21-2009, 11:23 PM
dmplaura's Avatar
dmplaura dmplaura is offline
Magnate
 
Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
dmplaura dmplaura is offline
Magnate
dmplaura's Avatar
 
Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
Default 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.

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.
__________________
2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
dmplaura is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
azoyizes (07-22-2009), Dejibo (07-25-2009), Desinie (07-25-2009), ewizabeth (07-25-2009), FinLady (07-22-2009), Kitty (07-22-2009), Lady (07-24-2009), SallyC (07-22-2009), Taffy (07-22-2009)