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Thursday
Bill
I've just joined here, so here's a bit about me. Oct 25 2006 7:42 AM
My name is William (Bill) Roberts; I am 57 years old, was diagnosed with RRMS in 1998, and upgraded to Secondary Progressive in 2002. My chief symptoms are (were) extreme mixed sleep apnea, COPD, inability to walk, total deafness in my left ear, and inability to concentrate for any period of time. I have been treated with Avonex, Copaxone, and Rebif of the ABCR drugs, chemotherapy (Cytoxan, plasma exchange, as well as many, many sessions of IV steroids (Solumedrol). As of June, 2005, I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately result in my demise. I had also ballooned in weight to 289 pounds. Two of the top neurologists in Birmingham consulted and agreed that, while continuing on Rebif, I should begin taking a week of IV steroids every three months, regardless of my condition. I did not feel that the steroids were offering enough positive results any longer, and I did not want to take any more. I asked if they would mind my getting an alternate opinion from another neurologist. They agreed. My new neurologist reran all of the standard MS tests, including MRIs. After studying the results, she suggested I stay on the Rebif and see what the next two months showed with regard to flares or episodes, then to probably go back on chemotherapy. I asked her, at that time, if she would prescribe a drug LDN (Low Dose Naltrexone), for me. I had read a great deal about it and talked to a number of MS sufferers who had improved with the use of LDN, a medication that is FDA approved as a treatment for Heroin addiction and alcoholism. She said she had never prescribed it but had also read a lot about it. She agreed to prescribe it. I began, around the first of July, 2005, with 1.5 Mg per day for the first week, then increased to 3.0 Mg from then, on. I also stopped taking the Rebif at that time. While I did not notice any improvement for the first three months, I also had NO flares either. Then, I began to notice that my breathing was improving- I could take time off from the oxygen for extended periods of time; the strength in my legs and arms was improving- I began to be able to take short walks with a walker, then longer walks, then changed to a cane, then actually walked to the bathroom without assistance! My sleep began to improve, as well. Improvement continued and actually increased, so that when I went for my six month check-up with my neurologist, I did not even take my cane, and I blew away my neurologist by acing all the tests. I am now driving again after four years, walking totally without assistance, and have dropped my weight down to 232 pounds. I hope to get back to my normal weight of 195 by year's end. In April, after my wife was diagnosed as a borderline diabetic, I walked in a “Walk For Diabetes.” I walked just over 21/2 miles, with no assistance, beginning with the first group out and finishing with the first group in! I was both pleased and proud to accomplish something else I never thought I would be able to do again. Now, I plan to spend the summer building a fence in our back yard and re-landscaping it. LDN is NOT a cure for MS. I still have it, and I still have issues with it that I have to deal with everyday, but I attribute my miraculous improvement to LDN, attitude, faith, and my new neurologist's willingness to prescribe LDN for me. It is allowing me to do things I never thought I would be able to do again, and if it were to become an approved treatment for MS it could not only possibly do the same for others that it has done for me, but it could also possibly free up millions of dollars that could be used to find the cause of diseases such as MS. Finding the cause for a disease brings researchers MUCH closer to finding a true cure. Pharmaceutical companies need to be able to make a profit off of the drugs they develop through their research. The cost of such research is very high, and LDN, a very inexpensive medication, will not produce the profits those companies need in order to warrant their doing the trials to get it approved for MS, as well as ALS, Alzheimer’s, Parkinson’s, AIDS, Crohn’s, many types of cancer, child autism, and even Rheumatoid arthritis. Those of us who have received better results from LDN than the other approved treatments are working diligently to raise funds for trials of LDN for MS, so that it may gain FDA approval for us. Websites- http://www.lowdosenaltrexone.org and http://www.ldners.org
Thank you. Sincerely, William (Bill) Roberts http://www.myspace.com/thatremindsme323
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