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Hi, i was diagnosed in 1998

Posted: Tue Feb 14, 2006 2:31 pm
by Slumby
I thought I'd better introduce myself. I promice none of my future posts will be this long!

My name is Laura, I live in California. I was dx in Nov 1998 and immediately started on Pred, then Solumedrol after I weaned off of Pred. Avonex followed but I quit that within a year. I've not been on meds since. Tried Marinol once or twice, hated it. I tried one Baclofen last week or so before bedtime, it seemed to help with the 'night stiffness' I get. I got up in the middle of the night and had absolutely no stiffness.

I found this site the other week as I was looking for LDN info. I have a dr. appt early tomorrow morning to see if I can get LDN. The doctor is only supposed to refer me to a Neuro (who I used to see, she dx'ed me), but I'll be bringing lit. to try and convice him to Rx it without referring me to her. I have a feeling she won't want to Rx (she was insistant that I go on avonex, not Betaseron only because she already had a patient on Betaseron. So I might be able to convince her with "I'll be your LDN guinea pig!"). Between the two doctors, maybe I can get an Rx for LDN. If not, I'll ask for Baclofen.

My major symptoms so far are: weakness in the left leg, tremor in left hand/arm, fatigue, spasicity, incomplete bladder emptying. I'm shopping half heartedly for a nice, pretty cane, for when I need it. I'm going to Universal Studios Hollywood next week (free tickets!) and you better believe I'm wheelchairin' it.

Welcome, Laura!

Posted: Tue Feb 14, 2006 6:26 pm
by lyndacarol
Welcome, Laura ("Slumby").

You have found the way to fit right in here--you seek info and you contribute info to others. I have terrible stiffness in the mornings, too, and will consider Baclofen, based on your experience. Thank you.

Posted: Wed Feb 15, 2006 8:37 pm
by Slumby
Thanks, Lynda.

I should point out that in the middle of the night I no stiffness but by the time I got up in the morning, the drug wore off and I was back to "normal." This was a 10mg dose. And, a generic name for Baclofen is "Lioresal".

Posted: Wed Feb 15, 2006 9:05 pm
by Arron
Hi Laura, welcome to the site and good luck with the doctor's appointment!

Posted: Fri Feb 24, 2006 8:55 am
by Katman
Hi Laura

You could have my cane except that I gave it away already. I have had PPMS for nearly 11 years and was a 6.7 on the EDSS and am now 2.5. I have also been on the antibiotics regimen found on the site www.cpnhelop.org for 17 months and now walk/run a mile almost every day. Please visit there. It may save you, too.

Rica