Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Hi Jan and welcome. I've had PPMS for 15 years, went BBD (Best Bet Diet, if you are new to this - basically excludes gluten, legumes and dairy) 4 years ago and saw some good improvements. Had CCSVI treatment 4 months ago and have shaved some more symptoms off my list. I fought fatigue with pycnogenol, co-enzyme Q10, ginkgo biloba and ginseng amongst others, and the exclusion of wheat helped me there too but CCSVI treatment has removed my fatigue 100%. Gait - can't help on that - still pleased if I can stumble 5 metres with my walker. Good luck and never give up! Janet To: mscured From: atlanteanproductions@... Date: Mon, 7 Mar 2011 14:28:24 -0600 Subject: new member ---------- Forwarded message ---------- Date: Mon, Mar 7, 2011 at 2:14 PM Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! To: mscured Moderator <mscured-owner > Hi. My name is Jan. I've had MS since at least 1992. My main MS problem is severe fatigue, but I was able to work until 2000. At that time, the fatigue became extremely intense, so that I was able to work only 2 hours at a time, I also developed gait problems - unsteady & walked with a limp and falling fairly often. I had tried the ABC drugs without any improvement in the MS symptoms, but they led to my developing a hemolytic anemia, needing transfusions. I have tried stress reduction, biofeedback, a TENS unit, accupuncture, chiropractic,,,, all without noticable success. I refuse to give up hope though and continue to hope for a miracle. I believe people with MS sharing their stories is the best medicine for thid awful disease. Be well, jan g Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2011 Report Share Posted March 7, 2011 Hi Jan I to believe talking with other people with MS helps those who have MS. After all, no doctor, relative, pastor or best friend knows how we feel even if we tell them. But a person even a stranger with MS does understand how we feel, our aches, our pains, our stories of spasms and fatigue.... Why because they too have MS!!!! I have meet many new friends online who have MS and I cherish their friendship. We can talk, cry and even have our little pity parties together, lol. I was dx in 2004 after a long time of struggling to find why my body was doing strange things and why I was always so tired and why I was always going numb. I went through 4 neurologist, multiple MRI's , spinal taps, evoke potential test, etc...etc... Until one day they goofed up and one neurologist put MS on my release papers as I went to pay. I noticed it and started to cry. My husband called that same day for an appointment the next day for the three of us to meet.Well,long story short, my husband ask why wasn't I on meds to slow the progression of the MS down and the neurologist said, " She doesn't have MS " that's when my husband pulled out the paperwork that I had that showing MS on it. The neurologist said, " It was a type O " and then stood up like he was going to fight and my husband stood up and they began to yell at each other. I tugged at my husbands shirt and said, Denver kets just go and never come back here. " . We left and never looked back. Taking my files and old MRI results with us. With a big fuss getting them but we did het them. Weeks later we finally located a MS specialist approx. 70-90 miles from us and scheduled an appointment. Jan it took 4 months to get in his office but he looked at my FIRST MRI and said, " sweetie I'm sorry to say, but you have 3 lesions on your brain and one on your spinal and you have Multiple Sclerosis " . . That's when I really started to cry, because I really knew that I had it. I always knew deep down inside but I had never had anyone to tell me. Well, that's my story. Guess I just vented and I do feel better telling my story kinda like a testimony, lol. Again, I too feel talking about it, even telling about what happened to you, how you found out, who your caregiver is, how bad you are or what type of MS you have, just anything about MS that you can share will help you with MS. I have found that sharing herbal stories helps because we learn what has helped some may help us. We may learn that a drug used for ...say like me, I have major headaches. They can't find a reason even after a CT scan etc,, so they are treating me with Topomax and Imitrex. Now they are having to increase my Topanax. So, by sharing this it may help someone else who is having migraine headaches like I am with MS. They can share this with their neurologist and maybe just maybe it could help them. As for me, no it hasn't stopped mine, lol. I will be calling my neurologist again tomorrow. Okay, I'm writing a book now, lol TTYL Anita anitalyns@... ---------- Forwarded message ---------- Date: Mon, Mar 7, 2011 at 2:14 PM Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! To: mscured Moderator <mscured-owner > Hi. My name is Jan. I've had MS since at least 1992. My main MS problem is severe fatigue, but I was able to work until 2000. At that time, the fatigue became extremely intense, so that I was able to work only 2 hours at a time, I also developed gait problems - unsteady & walked with a limp and falling fairly often. I had tried the ABC drugs without any improvement in the MS symptoms, but they led to my developing a hemolytic anemia, needing transfusions. I have tried stress reduction, biofeedback, a TENS unit, accupuncture, chiropractic,,,, all without noticable success. I refuse to give up hope though and continue to hope for a miracle. I believe people with MS sharing their stories is the best medicine for thid awful disease. Be well, jan g Quote Link to comment Share on other sites More sharing options...
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