Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 I have been diagnosed with ALS (going for second opinion next week) and my neuro told me to go on Rilutek, which I have done. I asked about Celebrex and minocycline and he said it was up to me. He gave me samples of Celebrex and an Rx plus an Rx for monocycline. He also had no objections to creatine. I think his approach is I have nothing to lose, so why not try it? I already take 13 Rx pills for hypertension, etc. Rilutek costs $800 each month, so cost of additional meds comes into play. I'd appreciate your experiences with taking any of these drugs separately or in combination. thanks so much. Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Edith I opted out of Rilutek myself. I was told it extended life 3 months and was to cost me $1000/mo. Bear in mind that was 3 years ago (could have been $36000 ago). I'm on high dose anti-oxidant therapy, Celebrex, creatine, hormones(overall I take 27 pills daily). If you go to the free MEDLINE site and search the most recent worldwide and accredited literature and studies, you will find the creatine/Celebrex combo slows ALS athrophy, monocycline is being used because ALS carry a high % of infection/inflammation countered by it. Female hormones were discovered by accident to be extremely neuroprotective. The initial study was to see if exercise helped outcome. It did but only in women. At closer look the exercise was increasing the female hormones. I'm proof...take my hormones away and my speech understandability drops to 60%. In the last month there was also a great leap made in the mice study where they are sending a virus with a gene modifier to activate the brain's natural Growth Factor which in turn awakens the sleepy neural stem cell to make repairs. That research will help ALS, PLS, PD, etc...and won't have to wait while they figure out what caused the damage. There are now 3 levels of the ALS DX: Possible ALS, Probable ALS, and Confirmed ALS. Which did you get? I totter back and forth between possible and probable...and have for 5 years now. I'm still walking unassisted and do the single Mom stuff. Bear in mind a resident neuro told me 5 years ago I was a Confirmed ALS and due to bulbar onset had 6 months to live. If I could find him today I would pluck his pubic hair with tweezers---S-L-O-W-L-Y. All in all I've been examined by 17 neuros, discussed by a panel in Cleve. Clinc....and basically am told I don't fit their flowchart DX. I improve and then fall back. PLS I think. I'll have a Babinski sign and 6 months later its gone again. Get that second and maybe a third or fourth opinion!!! Neurology is a New Frontier. Unfortunately the variance of neurological diseases increases as our environment fills with chemicals and such. The neuros learn with us. Sorry for all the verbage but felt it was important. Eva in WV Finding a way everyday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Eva, I was told at Mayo by a PT that I would get deteriorating until I was in bed and could not move and would eat through a tube. I told him he was wrong and I would not be back to see him again. I did get worst but I am not doing to bad. I would like to do the same thing to him as you would that person. (ha ha). Jane Anne Re: Which meds to take > Hi Edith > I opted out of Rilutek myself. I was told it extended life 3 months > and was to cost me $1000/mo. Bear in mind that was 3 years ago > (could have been $36000 ago). I'm on high dose anti-oxidant therapy, > Celebrex, creatine, hormones(overall I take 27 pills daily). If you > go to the free MEDLINE site and search the most recent worldwide and > accredited literature and studies, you will find the > creatine/Celebrex combo slows ALS athrophy, monocycline is being used > because ALS carry a high % of infection/inflammation countered by it. > Female hormones were discovered by accident to be extremely > neuroprotective. The initial study was to see if exercise helped > outcome. It did but only in women. At closer look the exercise was > increasing the female hormones. I'm proof...take my hormones away and > my speech understandability drops to 60%. > > In the last month there was also a great leap made in the mice study > where they are sending a virus with a gene modifier to activate the > brain's natural Growth Factor which in turn awakens the sleepy neural > stem cell to make repairs. That research will help ALS, PLS, PD, > etc...and won't have to wait while they figure out what caused the > damage. > > There are now 3 levels of the ALS DX: Possible ALS, Probable ALS, and > Confirmed ALS. Which did you get? I totter back and forth between > possible and probable...and have for 5 years now. I'm still walking > unassisted and do the single Mom stuff. Bear in mind a resident > neuro told me 5 years ago I was a Confirmed ALS and due to bulbar > onset had 6 months to live. If I could find him today I would pluck > his pubic hair with tweezers---S-L-O-W-L-Y. All in all I've been > examined by 17 neuros, discussed by a panel in Cleve. Clinc....and > basically am told I don't fit their flowchart DX. I improve and then > fall back. PLS I think. I'll have a Babinski sign and 6 months later > its gone again. Get that second and maybe a third or fourth opinion!!! > > Neurology is a New Frontier. Unfortunately the variance of > neurological diseases increases as our environment fills with > chemicals and such. The neuros learn with us. > > Sorry for all the verbage but felt it was important. > Eva in WV > Finding a way everyday. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Jane Anne: What a horrible thing for that person to say to you. The one thing about PLS, nobody knows whats down the road for any of us. Some are worse then other's who knows why. Look at me for over 30 years, still going strong, driving etc... I feel a lot of my progression is age, and weight. The less do the better I feel, so we all do the best we can, there are no crystal ball to predict our future. Rita Love & Hugs ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 AMEN!! AMEN!! PAT in NC Re: Re: Which meds to take Jane Anne: What a horrible thing for that person to say to you. The one thing about PLS, nobody knows whats down the road for any of us. Some are worse then other's who knows why. Look at me for over 30 years, still going strong, driving etc... I feel a lot of my progression is age, and weight. The less do the better I feel, so we all do the best we can, there are no crystal ball to predict our future. Rita Love & Hugs ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 Rita, Believe me I am not there yet and hope never to be like that. I do not walk now and that really gets me and one reason I do not get on line anymore and say any thing about this is because I do not want to bring any one down with my problems. But am on my happy pill so am not down as much as I was. and I will look for you and on TV. You know we wish you all the very best. We love you all. Jane Anne Re: Re: Which meds to take > Jane Anne: > > What a horrible thing for that person to say to you. The one thing > about PLS, nobody knows whats down the road for any of us. Some are > worse then other's who knows why. Look at me for over 30 years, still > going strong, driving etc... I feel a lot of my progression is age, and > weight. The less do the better I feel, so we all do the best we can, > there are no crystal ball to predict our future. > > Rita > > Love & Hugs > > > > ************************************* > Some people succeed in spite of their handicap. Others succeed because > of them. > > > > > > Quote Link to comment Share on other sites More sharing options...
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