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Experience Project.
Posted: Sun Apr 02, 2006 4:07 pm Post subject: Introducing Myself
Hello Everyone!
I'm very happy that I found this site...I'm going to enjoy "meeting" fellow MSers and exchanging information. A little about me...I'm 38, recently engaged, no kids (yet), diagnosed with R/R MS in October 2003, and currently taking BetaSeron and 3-5 day courses of Solumedrol every 2-3 months. Had several petite mal and then two grand mal (while being examined by a neurologist in the ER) seizures in August of 2004 (no family history of seizures) and am currently taking medication to prevent them. Originally diagnosed with 3 lesions in the brain and one in the C-2/C-3 section of my spinal column (as large as a finger) and was *this* close to being a quadraplegic. Luckily, was given a massive dose of the solumedrol at the ER which was then followed by a 5-day course at home. I've tried to take a very proactive approach since the diagnosis and have tried to educate myself as much as possible about the disease. Have a very strong support system in my fiance, family, friends, doctors, colleagues, etc., and trying my darndest to keep a positive outlook on things even when I'm having a crappy day! After all, each day that I wake up is a good thing, right?
Again, I look forward to getting to know you all and exchanging information and ideas.
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Sun Apr 02, 2006 10:05 pm Post subject:
Hello Jennifer,
Welcome to the site. You will find a warm and very knowledgable community here that will welcome your participation with open arms.
Rica, I appreciate your welcome but take exception to you again immediately referring a new member to an alternate site that is *not at all affiliated* with This is MS and focusses on one treatment option-- and an experimental one at that. Worse, you are claiming that patients are "without exception" better-- I cannot allow you to make such dangerous and unsubstantiated claims on this website. As most readers know, antibiotics is one of a bevy of alternative treatments that an MS'er should evaluate if unhappy with the approved therapeutics, with the close involvement of their doctor and with full understanding that there is as yet little clinical data to support efficacy for this application, and what there is certainly does not support a 100% success rate.
This site is about patient empowerment through knowledge of *all* viable treatment options-- if you are interested in evaluating antibiotics with the advice and consent of your doctor, you can find plenty of information in the antibiotic forum.
Now back to the introductions thread,
-arron _________________ 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.
Posted: Mon Apr 03, 2006 9:18 am Post subject: Welcome, Jennifer
From your introduction, I think you will be a great asset to this site. You seem to have an inquiring mind and a wonderful attitude (though we are all allowed to have those "moments," you know).
I think you will find like-minded souls at this site; so...welcome!
Joined: Oct 05, 2006 Posts: 5 Location: El Dorado, CA
Posted: Thu Oct 05, 2006 12:49 pm Post subject: Hello one and all!
Hi there everyone! I found this site through a google search for "negative side effects + low dose naltrexone + ms."
I'm a 49 year old, 6' tall unmarried woman with no kids, just four cats and the horse (see below). I've have been diagnosed since July 1996, on Copaxone since its release, and was doing great up until about two and a half years ago. I'm now having more exacerbations (went seven years withone one) and my neurologist says my disease is progressing. NOT WHAT I WANTED TO HEAR!
Am trying desperately to get a prescription for LDN, and have already given about 15 pages of internet stuff to the Dr., and will be printing up evidence found here too.
I have a 23 year old horse who I've had for just over one year. She's the light of my life! Breezy is a 15 hand bay 3/4 Arabian, 1/4 quarter horse. She's so gentle and rideable. It's always a challenge for me to get on her, however!
I'll post again if/when I get on LDN and let you all know how that goes! _________________ Wherever you go, there you are!
Joined: Oct 05, 2006 Posts: 5 Location: El Dorado, CA
Posted: Sat Oct 07, 2006 9:52 am Post subject: LDN!!!
I started Low Dose Naltrexone last night. At 11:40 P.M. I got up to use the bathroom and my right hand was no longer numb! Also, my left leg has about 50% more mobility!
It was no problem walking up the hill to feed Breezy this morning!
I'll post again when other things start improving... _________________ Wherever you go, there you are!
Joined: Jul 30, 2006 Posts: 40 Location: Western NY
Posted: Sun Oct 08, 2006 5:47 pm Post subject: Hi
Hi
My name is Mick (yes, like the mouse only shorter).
I’m in one of those statistical minorities; 50ish male dx’d with ppms in 2001 (after limping for a year). I was finally dx’d at the Cleveland Clinic after some frustrating and down right incompetent experiences with neuros. Anyway, gave the director my info and was diagnosed with PPMS in about 30 seconds. Hmm?
I’ve tried Novantrone, stopped it after 3 doses and a 20% decrease in heart function. Now I don’t take anything (except a very careful diet and a slew of vitamins)
I watch the board and contribute when I can.
I introduced myself earlier in the introduction forum.
Posted: Sun Oct 08, 2006 7:22 pm Post subject: Welcome, Mick
Welcome. You'll find lots of info and support at this site. You could spend DAYS reading everything here, even if you started with just the General Discussion forum!
Hello -
I was diagnosed about 3 years ago - never had a problem before that first BIG ONE. I am about to turn 30 (yikes). I work 50 hours an week and go to school - despite relapses every three months since diagnosis...
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Tue Oct 10, 2006 1:28 am Post subject:
hi outoforder13 and skyewriter-- welcome ! _________________ 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.
Posted: Wed Oct 25, 2006 5:25 pm Post subject: Hi All
New to here but reading my way around. 46 F here RRMS. DX'd 2/05 after having numbness and tingling in hands and various other locations. I thought I was having a stress reaction (son in Iraq at the time) boy was I off!!! My symptoms have gotten no better, no worse since onset. Just tired all the time.
Taking Avonex. Don't like it. Not to fond of my neuro but here in Cornfield the pickens are slim (actually he's the only one). I'm still in the "closet" about my MS. Work full time, have 4 kids and a grandson. I look forward to reading my way through the message board and getting some new ideas and maybe a little better attude about things. Can't hurt can it?
Joined: Oct 05, 2006 Posts: 5 Location: El Dorado, CA
Posted: Wed Oct 25, 2006 5:34 pm Post subject:
Vidalia! Get thee to a support group! (But only if it's an upbeat group; some can be pitty parties!)
And the best way to handle this (in my opinion) it to TELL YOUR FRIENDS AND FAMILY! You're gonna need support some day and your friends and family will NOT appreciate your keeping them in the dark.
Ask your neuro if you could try Copaxone -- it's side effects are a lot less than Avonex. And try to get on low dose naltrexone, if you think it might be a benefit. It's really helped me over the past three weeks!
Take care of yourself! And God bless your son in Iraq!
Martha _________________ Wherever you go, there you are!
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