Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 , Oh what a double whammy. I did not realize you have MS and CMT. I found a handful of older (1999) resources on CDIP (chronic demyleinating polyneuropathy) where Betaseron was used successfully; but then CDIP isn't CMT. I also found a interesting citation from an article (again in 1999) regarding neuroprotection as an option, but doesn't say WHAT it is! If I find anything more current, will keep you in mind. ~ Gretchen Abstract from J Neurocytol. 1999 Apr-May;28(4-5):383-95. Axonal pathology in myelin disorders. Bjartmar C, Yin X, Trapp BD. Department of Neurosciences, Lerner Research Institute, Cleveland Clinic Foundation, 9500 Euclid Ave., Cleveland, OH 44195, USA. Myelination provides extrinsic trophic signals that influence normal maturation and long-term survival of axons. The extent of axonal involvement in diseases affecting myelin or myelin forming cells has traditionally been underestimated. There are, however, many examples of axon damage as a consequence of dysmyelinating or demyelinating disorders. More than a century ago, Charcot described the pathology of multiple sclerosis (MS) in terms of demyelination and relative sparing of axons. Recent reports demonstrate a strong correlation between inflammatory demyelination in MS lesions and axonal transection, indicating axonal loss at disease onset. Disruption of axons is also observed in experimental allergic encephalomyelitis and in Theiler's murine encephalomyelitis virus disease, two animal models of inflammatory demyelinating CNS disease. A number of dysmyelinating mouse mutants with axonal pathology have provided insights regarding cellular and molecular mechanisms of axon degeneration. For example, the myelin-associated glycoprotein and proteolipid protein have been shown to be essential for mediating myelin-derived trophic signals to axons. Patients with the inherited peripheral neuropathy Charcot-Marie Tooth disease type 1 develop symptomatic progressive axonal loss due to abnormal Schwann cell expression of peripheral myelin protein 22. The data summarized in this review indicate that axonal damage is an integral part of myelin disease, and that loss of axons contributes to the irreversible functional impairment observed in affected individuals. Early neuroprotection should be considered as an additional therapeutic option for these patients. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 In a message dated 7/7/2003 9:23:42 AM Pacific Daylight Time, n1vh@... writes: > I'm wondering if any other members also have MS or other > CNS-demyelinating condition and CMT? Does anyone know if ABCrs > have been used to help CMT or prevent further CMT demylination? > Are ABCrs helpful in other peripheral neuropathies? > > Thanks also for the URLs for New Balance shoes! > > in Newington Hi , I met one other person on the web that had both CMT and MS. I don't know where she is now . I met her a few years ago and lost touch. I just wanted to let you know you are not alone with the CMT and MS. I think you should contact Dr. Shy and ask him about the MS meds. Out of everyone I think he may have a pretty good idea. I think he is in Michigan??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 I have CMT but was misdiagnosed with MS for three years. I took Copaxone for the three years (a non-inteferon drug used to stop progression in MS) and to be perfectly honest, I felt better then than I do now. Upon finding out that I had CMT instead, my neurologist took me off of the Copaxone immediately. At first I was so glad, because I did not enjoy injecting myself daily with Copaxone; however, I swear that drug made my " CMT " better. I wrote the manufacturer (TEVA) to see if maybe the drug could help those with a peripheral neuropathy, too, but I never got a response. Copaxone acted like a decoy and fooled the body into NOT attacking the myelin (coating of the nerves) and fortunately, side effects were few compared to the other ABC drugs used for treating MS. Karon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 In a message dated 7/8/2003 10:54:17 AM Pacific Daylight Time, kedleson@... writes: > Copaxone acted like a decoy and fooled > the body into NOT attacking the myelin (coating of the nerves) and > fortunately, > side effects were few compared to the other ABC used for treating MS. > > Karon Karon, Now I want to try Copaxone. Maybe your on to something here! jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 I swear, I truly believe that Copaxone shows promise. Teva should look into this. Quote Link to comment Share on other sites More sharing options...
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