Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Oh I'm so sorry. I wish I could help other than just say I really care and am concerned for you. My only medical comment is are you able to tolerate a regular MRI or would an open MRI be better for you? I/we totally understand your frustrations. Please keep us informed, Hugs of understanding to you, Rosie >>On Behalf Of L Went for 3 month neuro appt and MRIs emergency ones were escalated to Friday on cervical spine and brain. A recent mouth lesion biopsied with severe inflamm last week and consistent with Behcet's. The big question is whether they will change my treatment from copaxone because if neuro behcet's vs [**] chronic relapsing progressive MS, then it would be appropriate to treat me with TNF medications and immunosuppressives which they have been reluctant to do with MS dx. Meanwhile I have much increased headaches past 10 days , visual issues, started with high fever about 10 days ago, increased balance issues, increased low grade fever and so they are doing the MRI earlier than usual. I am also very frustrated because I have been on a mindset to slow down my activity, have recently met a man whom I am dating, am a single mom, and have spent a decade while.....they decide... Love you guys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 I left out my key frustration which is that I am 10 weeks into following a CSM protocol. I had failed the CSM so miserably, had the low MSH and all the genetic typings etc. My VCS numbers and mobility seemed to improve quickly briefly on the CSM, and then retreat, get better again and then go quickly downhill and that is the key part that I left out which is that I am followed by a neuro for MS, my ENT following Dr. S protocol, various rheumys and derm that work with autoimmune issues. I still believe my CNS issues are neurotoxin mediated (not necessarily but including mold but also due to chem. And envrio factors) and sort of unsure where we will go from here. Weeks ago, I thought I'd have this super fragilistic MRI this month but with CNS symptoms worsened and obvious that I am exacerbating to some extent, wondering how much longer we should/can/ try the CSM to see what it will address and such. Anyway key points that were left out. _____ From: [mailto: ] On Behalf Of healthier4all Sent: Tuesday, March 21, 2006 5:01 PM Subject: RE: [] MS, etc. - Oh I'm so sorry. I wish I could help other than just say I really care and am concerned for you. My only medical comment is are you able to tolerate a regular MRI or would an open MRI be better for you? I/we totally understand your frustrations. Please keep us informed, Hugs of understanding to you, Rosie >>On Behalf Of L Went for 3 month neuro appt and MRIs emergency ones were escalated to Friday on cervical spine and brain. A recent mouth lesion biopsied with severe inflamm last week and consistent with Behcet's. The big question is whether they will change my treatment from copaxone because if neuro behcet's vs [**] chronic relapsing progressive MS, then it would be appropriate to treat me with TNF medications and immunosuppressives which they have been reluctant to do with MS dx. Meanwhile I have much increased headaches past 10 days , visual issues, started with high fever about 10 days ago, increased balance issues, increased low grade fever and so they are doing the MRI earlier than usual. I am also very frustrated because I have been on a mindset to slow down my activity, have recently met a man whom I am dating, am a single mom, and have spent a decade while.....they decide... Love you guys FAIR USE NOTICE: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 , Ask Dr. T for a script of the low dose naltrexone. You don't have anything to lose trying it and it raises endorphin levels which help with inflammation. It really helped me tremendously until I got slammed with my toxic heat and those darn air scrubbers!! Will take it forever with CSM. If Dr. T says no, ask your neuro b/c Dr. F there gave me a script so you should be able to get the LDN script. Tell your neuro about me b/c he is who Dr. F referred to about the LDN when I asked for it. He just said no proof blah blah but my MRI was stable after taking it for 6 months and also most all symptoms were gone except some numbness and sinus UNTIL the Toxic Heat came on! I make my own LDN from a 50mgs or Revia which is cheaper than compounding it but it still isn't real expensive. For newbies you can read about low dose naltrexone at www.low dose naltrexone.org. I started Dec. 17, 2004 and been on it since. It helped me first week I started it and the liquid method worked best for me. www.goodshape.net at the bottom has some instructions about making LDN from the 50mgs of Revia. Rhonda --- In , " L " <knightshotter@...> wrote: > > I left out my key frustration which is that I am 10 weeks into following a > CSM protocol. I had failed the CSM so miserably, had the low MSH and all the > genetic typings etc. My VCS numbers and mobility seemed to improve quickly > briefly on the CSM, and then retreat, get better again and then go quickly > downhill and that is the key part that I left out which is that I am > followed by a neuro for MS, my ENT following Dr. S protocol, various rheumys > and derm that work with autoimmune issues. I still believe my CNS issues are > neurotoxin mediated (not necessarily but including mold but also due to > chem. And envrio factors) and sort of unsure where we will go from here. > Weeks ago, I thought I'd have this super fragilistic MRI this month but with > CNS symptoms worsened and obvious that I am exacerbating to some extent, > wondering how much longer we should/can/ try the CSM to see what it will > address and such. > > > > Anyway key points that were left out. > > > > _____ > > From: [mailto: ] > On Behalf Of healthier4all > Sent: Tuesday, March 21, 2006 5:01 PM > > Subject: RE: [] MS, etc. - > > > > Oh I'm so sorry. I wish I could help other than just say I really > care and am concerned for you. > My only medical comment is are you able to tolerate a regular MRI or would > an open MRI be better for you? > I/we totally understand your frustrations. Please keep us informed, > Hugs of understanding to you, > Rosie > > >>On Behalf Of L > Went for 3 month neuro appt and MRIs emergency ones were escalated to Friday > on cervical spine and brain. A recent mouth lesion biopsied with severe > inflamm last week and consistent with Behcet's. The big question is whether > they will change my treatment from copaxone because if neuro behcet's vs > [**] chronic relapsing progressive MS, then it would be appropriate to treat > me with TNF medications and immunosuppressives which they have been > reluctant to do with MS dx. > Meanwhile I have much increased headaches past 10 days , visual issues, > started with high fever about 10 days ago, increased balance issues, > increased low grade fever and so they are doing the MRI earlier than usual. > I am also very frustrated because I have been on a mindset to slow down my > activity, have recently met a man whom I am dating, am a single mom, and > have spent a decade while.....they decide... Love you guys > > > > > > > > > FAIR USE NOTICE: > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 I got way increased spasticity with LDN and am not going to start on LDN again at this point. Waiting for an MRI on Friday but have decided against LDN trial again because I don't need more spasticity. Dr. Thanks for the suggestions. _____ From: [mailto: ] On Behalf Of Rhonda Sent: Wednesday, March 22, 2006 12:56 PM Subject: [] Re: MS, etc. - , Ask Dr. T for a script of the low dose naltrexone. You don't have anything to lose trying it and it raises endorphin levels which help with inflammation. It really helped me tremendously until I got slammed with my toxic heat and those darn air scrubbers!! Will take it forever with CSM. If Dr. T says no, ask your neuro b/c Dr. F there gave me a script so you should be able to get the LDN script. Tell your neuro about me b/c he is who Dr. F referred to about the LDN when I asked for it. He just said no proof blah blah but my MRI was stable after taking it for 6 months and also most all symptoms were gone except some numbness and sinus UNTIL the Toxic Heat came on! I make my own LDN from a 50mgs or Revia which is cheaper than compounding it but it still isn't real expensive. For newbies you can read about low dose naltrexone at www.low dose naltrexone.org. I started Dec. 17, 2004 and been on it since. It helped me first week I started it and the liquid method worked best for me. www.goodshape.net at the bottom has some instructions about making LDN from the 50mgs of Revia. Rhonda --- In , " L " <knightshotter@...> wrote: > > I left out my key frustration which is that I am 10 weeks into following a > CSM protocol. I had failed the CSM so miserably, had the low MSH and all the > genetic typings etc. My VCS numbers and mobility seemed to improve quickly > briefly on the CSM, and then retreat, get better again and then go quickly > downhill and that is the key part that I left out which is that I am > followed by a neuro for MS, my ENT following Dr. S protocol, various rheumys > and derm that work with autoimmune issues. I still believe my CNS issues are > neurotoxin mediated (not necessarily but including mold but also due to > chem. And envrio factors) and sort of unsure where we will go from here. > Weeks ago, I thought I'd have this super fragilistic MRI this month but with > CNS symptoms worsened and obvious that I am exacerbating to some extent, > wondering how much longer we should/can/ try the CSM to see what it will > address and such. > > > > Anyway key points that were left out. > > > > _____ > > From: [mailto: ] > On Behalf Of healthier4all > Sent: Tuesday, March 21, 2006 5:01 PM > > Subject: RE: [] MS, etc. - > > > > Oh I'm so sorry. I wish I could help other than just say I really > care and am concerned for you. > My only medical comment is are you able to tolerate a regular MRI or would > an open MRI be better for you? > I/we totally understand your frustrations. Please keep us informed, > Hugs of understanding to you, > Rosie > > >>On Behalf Of L > Went for 3 month neuro appt and MRIs emergency ones were escalated to Friday > on cervical spine and brain. A recent mouth lesion biopsied with severe > inflamm last week and consistent with Behcet's. The big question is whether > they will change my treatment from copaxone because if neuro behcet's vs > [**] chronic relapsing progressive MS, then it would be appropriate to treat > me with TNF medications and immunosuppressives which they have been > reluctant to do with MS dx. > Meanwhile I have much increased headaches past 10 days , visual issues, > started with high fever about 10 days ago, increased balance issues, > increased low grade fever and so they are doing the MRI earlier than usual. > I am also very frustrated because I have been on a mindset to slow down my > activity, have recently met a man whom I am dating, am a single mom, and > have spent a decade while.....they decide... Love you guys > > > > > > > > > FAIR USE NOTICE: > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I was thinking maybe the CSM removing toxins maybe the LDN might react differently. Keep us posted on the MRI results. Rhonda --- In , " L " <knightshotter@...> wrote: > > I got way increased spasticity with LDN and am not going to start on LDN > again at this point. Waiting for an MRI on Friday but have decided against > LDN trial again because I don't need more spasticity. Dr. > > > > Thanks for the suggestions. Quote Link to comment Share on other sites More sharing options...
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