Hi, i was diagnosed in 1998

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Hi, i was diagnosed in 1998

Postby Slumby » Tue Feb 14, 2006 3:31 pm

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.
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Welcome, Laura!

Postby lyndacarol » Tue Feb 14, 2006 7:26 pm

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.
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Postby Slumby » Wed Feb 15, 2006 9:37 pm

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".
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Postby Arron » Wed Feb 15, 2006 10:05 pm

Hi Laura, welcome to the site and good luck with the doctor's appointment!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby Katman » Fri Feb 24, 2006 9:55 am

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
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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