Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 Doug, It's rarely a true pleasure to welcome a new member to our throng, but any introduction that brings a smile to my face like yours did deserves an extra hearty " WELCOME " ! I too was listed last November, but it'll be a while before I get the call... which is OK by me. Ecstatic that everything has gone so well for you. Peace, Bill Wise (37) PSC '00, Listed Tx 11/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2005 Report Share Posted March 3, 2005 Dear Doug, What a remarkable young man you are. Congratulations on your successful transplant. Keep up your positive spirit! You're a great role model for all of us. Welcome to the group. Ricky PSC 2003 New member Hi everyone. My name is Doug and I am 19. I was diagnosed in 4/00 with UC and in 10/00 I was diagnosed with PSC. In 2002 I had two episodes of bleeding varices. It remained under control with banding every 2 weeks until there were no more varices. My health dramatically declined in 11/04 and in 12/04 my bilirubin was up to 15.7. I was listed on the transplant list in 11/04. Then on Christmas Eve I got the call. By the time I was ready for transplant surgery, it was Christmas Day. What a wonderful gift it was! I was out of the hospital in 6 days and I have been doing great since. My bilirubin is now down to 1.7 and am only on 5mg of prednisone per day. Hopefully I can come off of it completely soon. Just wanted to say hi to everyone.Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 Hi Doug! Welcome to the group. My son, Marco, is 16 (17 this month) and has PSC and UC. We live in Wilmington, Delaware so we are neighbors. What school do you go to? I have been very impressed by your posts. You seem to have a wonderful attitude! Marco is not involved in this group yet but I think you would be a great role model. I wish you the best. Keep in touch! Beth~Marco's Momyllwsub1 wrote: > > HI. I go to nursing school in Philly. I am currently in my second year and i cant wait to go back at the end of march. In the summer, i work on the boardwalk at the jersey shore. my parents have taken great care of me during my ordeal and i thank them for that all the time. i hope that this group will be another great support system for me.Doug Find out how to become an organ and tissue donorhttp://www.shareyourlife.org/Default.asp Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2005 Report Share Posted March 5, 2005 Wow, what a great gift indeed. I was especially intrigued by your story since my daughter, at the age of 14, was diagnosed with UC & PSC. I am always interested in hearing how the younger folks have dealt with this disorder. Your attitude sounds absolutely wonderful. Congratulations on the transplant. Please keep us posted, and welcome to the group. LINDA (Mom of Suzanne, 15; UC, 1/04; PSC 3/04) New member Hi everyone. My name is Doug and I am 19. I was diagnosed in 4/00 with UC and in 10/00 I was diagnosed with PSC. In 2002 I had two episodes of bleeding varices. It remained under control with banding every 2 weeks until there were no more varices. My health dramatically declined in 11/04 and in 12/04 my bilirubin was up to 15.7. I was listed on the transplant list in 11/04. Then on Christmas Eve I got the call. By the time I was ready for transplant surgery, it was Christmas Day. What a wonderful gift it was! I was out of the hospital in 6 days and I have been doing great since. My bilirubin is now down to 1.7 and am only on 5mg of prednisone per day. Hopefully I can come off of it completely soon. Just wanted to say hi to everyone. Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2005 Report Share Posted March 6, 2005 > > > > HI. I go to nursing school in Philly. I am currently in my second > year and i cant wait to go back at the end of march. In the summer, > i work on the boardwalk at the jersey shore. my parents have taken > great care of me during my ordeal and i thank them for that all the > time. i hope that this group will be another great support system > for me. > Doug > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 From what I have read, that is typical. Get her to do some of the things on Dudley's list. I swear by the Best Bet Diet which has helped me no end. Janet To: mscured From: atlanteanproductions@... Date: Sat, 3 Oct 2009 13:49:55 -0500 Subject: new member ---------- Forwarded message ---------- Date: Fri, Oct 2, 2009 at 7:11 PM Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! To: mscured Moderator <mscured-owner > Hi My name is . My best friend since junior high suffers from MS. She is 34 years old and just had a baby 3 months ago. During her pregnancy she felt terrific. Since having the baby she has gone downhill and is suffering terribly. I am a very worried friend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Yvette, do not give up the ship. Remember you have MS, MS does not have you. Stay strong and focused. ________________________________ To: mscured <mscured > Sent: Wed, January 6, 2010 4:53:37 PM Subject: new member  ---------- Forwarded message ---------- From: Jeanne Pforts <pfortsjeanne@ yahoo.com> Date: Wed, Jan 6, 2010 at 6:52 PM Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! To: mscured Moderator <mscured-owner@ yahoogroups. com> I drank diet pop moderately for the past 2 years. I started working early morning hours and began drinking 2 - 3 cans of diet coke a day. Approximately six weeks later I began having numbness and tingling on the right side of my body. I stopped drinking diet pop. 2 weeks after the symptoms appeared I finally went to a chiropractor with no results, general doctor who ruled out stroke and cardio, and reffered me to neurologist. I had a MRI of neck and then brain. The MRI showed lesion on the brain stem. I then had a spinal tap, diagnosis- ms. My next appointment is later this month to discuss treatment options. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Thanks.. but it wasnt' my post-- I'm the moderator.. I was simply forwarding a message that was sent to me accidentally. I must have forgotten to remove my SIG line -- sorry guys... Yvette > > > Yvette, do not give up the ship. Remember you have MS, MS does not have > you. Stay strong and focused. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Jeanne, I'm late getting to my emails,so I apologize if someone else has covered this, but felt you should know in case someone else hasn't told you yet. I had symptoms of MS appear 3 years ago simply by chewing gum - it had Acesulfame - K in it, artifical sweetener. I didn't connect it at the time. But the symptoms started with eye pain, flashes of light, dizzyness, foggy brain. I went to an eye doctor (mainly for the eye pain), then had MRI's which confirmed the white 'fingers' and plaque on the brain so characteristic of MS. Even after that, I still didn't connect the two (MS being triggered by the gum. Not that it caused it, just aggravated it). I also had a lot of tingling/burning on my feet, hands, arms & legs. Then, I had a job change. The new one was one where I tended to chew the gum only on Monday morning (due to meetings, etc). What I found was that my eye pain while it had subsided over the holidays (since I wasn't chewing gum) was returning every Monday. After several weeks of that I hypothesized that possibly it was the gum. So, over the next few months I would abstain - hmmm, pain would stay away. But try 1-2 pieces, pain would return. I believe in 'proving' my hypothesis by trial a minimum of 3 times, 5 times being better before I believe without question that it was causing my problem. I have once in a blue moon tried some gum with Acesulfame-K in it just to convince myself that yes, it was the problem, and still is. My point is - stay away from artificial sweeteners at all costs - they are deadly. Mercola (mercola.com) has some great info on what those are, how they were discovered, what they can do to you, etc. I have since had the tingling (the burning subsided after several months) in my hands/feet and foggy brain starting to noticeably reduce after having my amalgams removed (symptoms really spiked there), and beginning a PROPER chelation protocol (Andy Cutler). I've only chelated 4 times, but have seen significant improvement in all areas just in the last 30 days. I also have a friend that was diagnosed, and her tingling is all but gone now when it was increasing just before beginning the chelation. I hope to be 'mostly' symptom free in the next couple of years (yes, it can take years to do it properly). This may not be your issue, but it was (and is) mine, so just thought I would pass this along to you. A lot of chiro's are good, some aren't. Research carefully what they want to give so you understand and can make informed choices - you don't have to 'blindly' take their advice. Be especially careful of your chelation advice - there is so much bad advice out there. Andy Cutler (AC) protocol may not be perfect, and it many times brings to light other issues, but there are countless success stories out there from people that have great success with it, when they follow it properly, and are patient with it. Also, one thing that helped me tremendously in my attacks ( I have relapsing/remitting), and if I miss the supplement I will typically have an episode within the next week or so is Myelin Sheath support by Planetary Herbals. I take 2 with each meal every day (6/day). I saw almost instantaneous improvement when I started taking it. Even keeled, stopped the ups and downs that I was experiencing every day. Be patient, do your research. And if you have ever had amalgams, chelation can/will help. Hope this helps. Jim ____________________________________________________________________________ __________ In a message dated 1/6/2010 7:53:48 P.M. Eastern Standard Time, atlanteanproductions@... writes: ---------- Forwarded message ---------- From: Jeanne Pforts <_pfortsjeanne@pfortsjea_ (mailto:pfortsjeanne@...) > Date: Wed, Jan 6, 2010 at 6:52 PM Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! To: mscured Moderator <_mscured-owner@mscured-ownemsc_ (mailto:mscured-owner ) > I drank diet pop moderately for the past 2 years. I started working early morning hours and began drinking 2 - 3 cans of diet coke a day. Approximately six weeks later I began having numbness and tingling on the right side of my body. I stopped drinking diet pop. 2 weeks after the symptoms appeared I finally went to a chiropractor with no results, general doctor who ruled out stroke and cardio, and reffered me to neurologist. I had a MRI of neck and then brain. The MRI showed lesion on the brain stem. I then had a spinal tap, diagnosis- ms. My next appointment is later this month to discuss treatment options. [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Thanks, Jim, for that good advice, and for sharing with the group the benefit of your experience. With best wishes, Dudley Delany http://profiles.yahoo.com/dudley_delany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 > I had symptoms of MS appear 3 years ago simply by chewing gum - it had > Acesulfame - K in it, artifical sweetener. > > I didn't connect it at the time. Wow, Jim, that's a lot of great info in your post. Thanks so much for sharing that! I know a woman who believes her cancer is connected to high intake of aspartame. Artificial sweeteners are just not worth the risk! Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi , Welcome to the group! Here is a website you may find helpful in treating your relative's MS: http://tinyurl.com/advice-to-msers With best wishes, Dudley Delany http://profiles.yahoo.com/dudley_delany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi and welcome. 15 years is enough with getting nowhere with MS. I've had it for 14 and it wasn't until I took it in my own hands a few years ago that things started to improve. I follow the Best Bet Diet which you'll read a lot about here, and it has helped me tremendously. That, along with regular exercise like swimming and yoga plus positive thinking helps loads. Janet To: mscured From: atlanteanproductions@... Date: Thu, 21 Jan 2010 15:43:34 -0600 Subject: New member ---------- Forwarded message ---------- Date: Thu, Jan 21, 2010 at 3:41 PM Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! To: mscured-owner Hello, Thanks for accepting me into this group. My name is and I am interested in learning what types of alternative therapies and treatments are working for people living with MS as I have a family member who is also afflicted and getting no help from the medical establishment over the last 15 years since the MS diagnosis. best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Welcome Jnanda. Looking forward to hearing about your recoveries. I've had it since 1995 and can't say I've got to the recovery stage BUT one of my initial lesions has disappeared which I put down to the Best Bet Diet (BBD - of which you'll hear a bit about here), amalgam removal and maybe CST (cranio-sacral therapy). I too believe it is curable. What symptoms do you still have? Janet To: mscured From: atlanteanproductions@... Date: Wed, 27 Jan 2010 15:03:12 -0600 Subject: new member ---------- Forwarded message ---------- Date: Wed, Jan 27, 2010 at 3:02 PM Subject: RE: Yahoo! Groups: Welcome to mscured. Visit today! To: mscured Moderator <mscured-owner > Hi. I have had MS since 1994 and had two significant recoveries after being in an end stage status. I am doing well right now, but I still have a couple lingering symptoms, and would like to be part of this group for support, resources and sharing. I believe MS is curable, especially after what I have experienced. Thank you. jnanda -----Original Message----- Fr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 Hi Janet. Mostly what I have now are seizures. I had the last of my amalgams out in December, so I am still detoxifying from that. Thanks for the welcome! Love, jnanda > > > Welcome Jnanda. > > Looking forward to hearing about your recoveries. I've had it since 1995 and can't say I've got to the recovery stage BUT one of my initial lesions has disappeared which I put down to the Best Bet Diet (BBD - of which you'll hear a bit about here), amalgam removal and maybe CST (cranio-sacral therapy). > > > > I too believe it is curable. What symptoms do you still have? > > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Jill--I have listed a link to a description of neuropathy (nerve pain)and the supplements suggested. It is a good site. Explains alot. After the link, I've pasted a couple of paragraphs FROM the site, which speaks to Benfotiamine and Methylcobalamin B12. (Benfotiamine is a fat soluble form of Vit. B1, Thiamine.) I think these two supplements might be a place for you to start. I myself get Vit. B1 injections daily, as MSer's don't utilize oral B1 well (or even from our food). But the Benfotiamine is supposed to be a close second. I wish you well; we are here for you. Congrats on your pregnancy!! Beverly http://www.mcvitamins.com/neuropathy.htm " A Remedy for this Problem: You might have heard of the new type of vitamin B1 being produced, called Benfotiamine. It is a fat-soluble version of vitamin B1. What does this mean? It means this new form of vitamin B1 can be taken orally in large dosages and it will not flush out of the body the way ordinary Thiamine (vitamin B1) does. The result is that by taking Benfotiamine the blood stream levels of vitamin B1 can now be greatly increased, nutritionally supporting the body to rapidly and effectively decrease or eliminate the symptoms of Neuropathy. Also available is Methylcobalamine (called Methyl B12). This is the form of vitamin B12 that can be directly utilized by the body and is available in the quantities nutritionally needed by the body to repair itself. Methyl B12 can be taken orally and is immediately available to the body much like injectable vitamin B12. " > ---------- Forwarded message ---------- > > Date: Thu, Mar 25, 2010 at 9:27 AM > Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today! > To: mscured Moderator <mscured-owner > > > > Hi, > > I was told almost 3 years ago that there is a 50% chance I may have MS. I've been on Gabapentin for nerve pain ever since. Now, I found out last week I am pregnant. I am 40 years old and scared to death. I had to stop my gabapentin cold turkey and have been suffering. I am interested in hearing alternatives to dealing with the pain and what has helped others. I am trying to alter my diet to eat more foods that help as anti-inflammatories. > Any help would be greatly appreciated. Thanks. > > Jill > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2010 Report Share Posted August 9, 2010 Moderator's note: If anyone knows a doctor who can help in Buffalo, please contact Donna privately. Hi,I'm new too. I'm on fent. patch, oxycontin, and baclofen. New pain management Dr. is slowly titrating meds higher for better pain control. Does everyone have a difficult time finding pain management Drs.? There is so few here (Buffalo)it's impossible to find more than 2 choices. Please fill me in,thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 I have the same problem. There aren't any pain management doctors in my insurance network that do anything other than injections and I don't have many options for that either. I also don't have a Neuro-Oncologist for the same reason. You are DEFINITELY not alone. -Steve M in PA > >\> Does everyone have a difficult time finding pain management Drs.? There is so few here (Buffalo)it's impossible to find more than 2 choices. Quote Link to comment Share on other sites More sharing options...
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