Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 > > hi all > > wondering if anyone has info if LDN has been tried or used with > someone have spinal cerebellar ataxia (SCA)? > > I have a new neuro who is a D.O. rather then MD. So wondering how > open he would be for me trying LDN. > > But I need some specific info to present to him for SCA and/or > chronic progressive degenerative ataixa/neurological disorder. > > MS ruled out, and two neuro's both believe i have some form of SCA or > at least something very similar. gait and truncal ataixa to point > need mobility devies, and if sitting require support on two sides at > least i.e. back and one side. > > I have reviewed the LDN website and did see its believe to aid ppl > with ALS, MS, PLS, etc.... I just want something to present to my > neuro that just maybe he would be willing to prescribe to see if > would offer anything. > > Or be honest with me, if even trying LDN or presenting to neuro is a > waste of time. > > Not looking for a miracle med but would be nice to have something to > slow progression at least. > > thanks in advance > marfla > orlando fl > =========== If this is an autoimmune system disease, Dr. Bihari feels LDN will work on all autoimmune system diseases. Hope that info helps. I spoke to Bihari personally on this subject. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 > ===========Thanks I have mailed the info and have an appt to discuss with neuro in November. I emailed Skip here in Florida asking him if he knew of anyone using LDN that has SCA. He responded that he didn't but suggested posting again. At least the neuro is allowing me an appt to discuss although that doesn't mean he is even considering ordering LDN for me. again thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Spinocereballar Ataxia / cerebellopontine degeneration is a gluten related disease, I guess you already is " on " a gluten ( gfcfsf) free diet ! Geir Flatabø On 10/18/06, marfla04 <marfla04@...> wrote: > I have spinocerebellar ataxia, history of lupus, and autoimmune > thyroiditis. > > it has taken almost 3 1/2 years to find neuros to finally agree on > what was wrong; gait/truncal ataxia, imbalance, foot drop, > sensorimotor polyneuropathy, fatigue, weakness, heat intolerance > etc.... As most MS was suspected but after two years of normal MRI's > I found two neuros willing to look beyond MS. > > Anyway, last week I printed the LDN info from their website and > mailed it to my local neuro. I asked him to review this information > and if willing to discuss with me for someone in his office to call > me to schedule an appt. > > Amazingly I mailed it on Thursday and on Friday his office called to > schedule appt to discuss LDN. Now I realize this doesn't mean he is > even considering allowing me to try. But at least he rec'd the info, > followed what i requested by appt to discuss. He didn't ignore it or > didn't bother not responding. > > So I go late November to discuss LDN (at least that is my hope by him > scheduling to see me he is at least open to discussing). > > thanks > marfla > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 http://en.wikipedia.org/wiki/Spinocerebellar_ataxia Quote Link to comment Share on other sites More sharing options...
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