Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hi Reg, I've been thinking of what you wrote--the part about the 14 year remission and how hard the MS came back when it did. As I must restate, I don't have MS, but I have erythema nodosum which is one of those flare-up and remission types of disorders--possibly autoimmune. On my EN group we always are comparing notes. I have had EN for 35 years. My EN flares up at various intervals. Once it stayed away for 3 years. Sometimes it it away for only a month and then returns. Perhaps those who have long remissions have long and more severe flare-ups too. The more often, the milder the flare up, at least in my own case. I have not taken meds for it ever. I have read that some get an MS flare up (and EN) once and that's it for life. Perhaps there is more similarity to our disorders than meets the eye. Keep up your good attitude. Love, --- In low dose naltrexone , " Reg Kreil " <regkreil@h...> wrote: > Hi Cinders, , and all > > I feel as though I should start this like > > " I May be wrong but " > > You all have heard from me before and I won't knock any drug specifically as > we are all so different. I just had to throw my two bits in on this subject > as maybe I have a small point here, > So back in 1981 I had three separate episodes of M.S. i.e.double vision > tingling fingertips and dragging leg plus that all invasive tiredness that > we know so well. > This was in 1981and we hadn't come as far as now.there wasn't even a M.R.I. > on the horizon. So any CRAB drugs that I could use were still either under > trial or not allowed in Canada. > What could I do? Well I went to a naturopath kinesiologist person. I won't > go into details but needless to say within two months I was as good as new, > now of course I gave her all the credit or at least her treatment program > diet, internal cleansing, and supplements. > This was all fine and dandy for fourteen years and then voila' it was back i > e. double vision tingling fingers dragging leg tiredness falling down etc. > So of course I tried all of what worked before .....it didn't help > Now we have new methods of controlling this right? > The Dr.s and the Neurologist said not in my case as I went so long between > episodes! > What the H$## were they taking about? Did I screw myself out of a possible > treatment cause of the naturopathic cure? Or was this just the natural > course of my disease? It would hit hard and then hide? There is no one that > can answer that. > My symptoms were quite quickly getting worse and I quit work and found LDN. > Since then we have definitely slowed the inevitable downhill slide and even > reversed its course somewhat. > Now what I am getting at is that maybe for me one or more of the Crabs would > have done the same to my " onset " symptoms as the naturopath, and then I > would have given it all the praise, but then again maybe,just maybe I would > have resolved this problem without any intervention at all, and then I would > have given God the Praise. > Really there are no sure things So no matter what we do about improving our > state, > it has to be our decision, we have to live with the consequences of our > actions, just as I will have to when I post this letter! > Face it for every supporter of any one treatment there are an equal number > of detractors,is that not so? > Those of us with M.S.on LDN are lucky that we have one more option in our > arsenal to combat this Chronic disease. > I use a cane all the time in doors, a power wheel chair outside in my yard, > and a scooter when I am on the town. Compare these to drugs, they all have > there place and I wouldn't have anyone tell me that one can be discarded for > another. I will use each as needed but I can't use any two together. > Reg. > > -------Original Message------- > > From: low dose naltrexone > Date: 06/08/04 09:22:11 > low dose naltrexone > Subject: [low dose naltrexone] Re: Different Opinion about Solu-Medrol (OT) > > Hi there - please don't slip too far into your cave, your opinion > was well expressed, and at least for me, much appreciated. You are > completely correct, this is a very personal disease, and each of us > must find our own paths. > > Having undergone SoluMedrol treatment to " save " my eyesight, I too > agree that for some of us, it has it's place. But I also agree with > those who have grave concerns about it's effects, and those who > choose to reserve it as a treatment of last resort. Now that I am on > LDN and am doing well (lucky - YES!) I hope I never have to endure > it again. But I will if and when I need to. > > You are without doubt very intellegent, so I am sure you are aware > of the long term negative side effects of steroid use, and have > weighed the consequences of getting infusions every 3 months. I am > just slightly younger than you, (although in significantly better > health - less severe MS) and to be honest, those side effects on a > person of our age would concern me greatly. After all, most of us > will have a " normal " life span, and while significant bone loss > maybe not a huge issue in our 50's it very well may become > significant in our 60's and 70's. And I think we have enought > problems without our meds. adding to them. However, the disabling > effects of MS are equally or more scary, so, we all have to do what > we think is best. I have the greatest respect for you, and am sure > you are doing what is best to treat your disease. > > God Bless, and best of luck with your treatment. You did not say if > you are considering LDN, (and I am not sure from your post if you > are still on betaseron or not) but if not, I hope you are > considering LDN. It might not be the " thing " for you, but many of us > have had good success, and feel it is worth trying. > > Cinders > > > > Quote Link to comment Share on other sites More sharing options...
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