Guest guest Posted August 13, 2005 Report Share Posted August 13, 2005 OK...a friend of mine says she has finally been dx'd w/a rare form of MS only affecting her face & muscles...not her nerves. Supposedly she's been dx'd in the past w/Bells Palsy, Hashimotos, poss Lupus, but now she found a doc who's told her this. Not a result of a MRI or Spinal but by a viral profile. I've looked and I've read about everything about MS, but I've never found this. The doc even told her she could 'beat it.' I don't know yet if they are pushing the CRABs or chemo. I'm just wondering if anyone else has heard of this? Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2005 Report Share Posted August 13, 2005 In a message dated 8/13/2005 8:05:37 PM Central Daylight Time, radbower@... writes: Is she possibly affected by the condition Trigeminal Neuralgia, which does affect the facial nerves, not muscles? I also get this painful form of facial nerve zapping from time to time and it's extremely debilitating. It does pass though and seems to come in waves... Only a small subset of those with MS also get this painful condition, sadly. I also recently started taking LDN 3 mos ago in the hope that it helps my MS in time, but it hasn't yet stopped the TN from rearing its ugly head from time to time. Rae +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Rae, That's something to look into. Thanks. Is there effective teatment? Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Is she possibly affected by the condition Trigeminal Neuralgia, which does affect the facial nerves, not muscles? I also get this painful form of facial nerve zapping from time to time and it's extremely debilitating. It does pass though and seems to come in waves... Only a small subset of those with MS also get this painful condition, sadly. I also recently started taking LDN 3 mos ago in the hope that it helps my MS in time, but it hasn't yet stopped the TN from rearing its ugly head from time to time. Rae From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of marciemjm@...Sent: Saturday, August 13, 2005 7:01 PMlow dose naltrexone Subject: Re: [low dose naltrexone]A Rare form of MS? OK...a friend of mine says she has finally been dx'd w/a rare form of MS only affecting her face & muscles...not her nerves. Supposedly she's been dx'd in the past w/Bells Palsy, Hashimotos, poss Lupus, but now she found a doc who's told her this. Not a result of a MRI or Spinal but by a viral profile. I've looked and I've read about everything about MS, but I've never found this. The doc even told her she could 'beat it.' I don't know yet if they are pushing the CRABs or chemo. I'm just wondering if anyone else has heard of this? Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 HI, I AM NOT YELLING AT YOU, IT IS EASIER FOR ME TO TYPE W/MS EYES. WOULD THE RARE FORM OF MS BE LABLED AS NARBURGS VARIANT MS ? HERE IS A LINK THAT MIGHT HELP YA OUT. http://mult-sclerosis.org/MarburgsVariant.html HOPE THIS HELPS, TAMMY IN WISCONSIN marciemjm@... wrote: OK...a friend of mine says she has finally been dx'd w/a rare form of MS only affecting her face & muscles...not her nerves. Supposedly she's been dx'd in the past w/Bells Palsy, Hashimotos, poss Lupus, but now she found a doc who's told her this. Not a result of a MRI or Spinal but by a viral profile. I've looked and I've read about everything about MS, but I've never found this. The doc even told her she could 'beat it.' I don't know yet if they are pushing the CRABs or chemo. I'm just wondering if anyone else has heard of this? Marcie Start your day with - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 > OK...a friend of mine says she has finally been dx'd w/a rare form of MS only affecting her face & muscles...not her nerves. Supposedly she's been dx'd in the past w/Bells Palsy, Hashimotos, poss Lupus, but now she found a doc who's told her this. Not a result of a MRI or Spinal but by a viral profile. I've looked and I've read about everything about MS, but I've never found this. The doc even told her she could 'beat it.' I don't know yet if they are pushing the CRABs or chemo. > > I'm just wondering if anyone else has heard of this? > > Marcie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Not really. There's a drug called neurontin that's a massive pain-killer, and leaves folks feeling a bit 'loony', according to a friend who has big problems with the same condition. He has also had surgery to cut the facial nerve off, but sadly it's only effective in 50% of cases who've gone the invasive surgical route, cause sometimes the connection grows back and his condition came back even stronger than before. I don't have it near as bad, thankfully... Rae From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of marciemjm@...Sent: Saturday, August 13, 2005 9:45 PMlow dose naltrexone Subject: Re: [low dose naltrexone]A Rare form of MS? In a message dated 8/13/2005 8:05:37 PM Central Daylight Time, radbower@... writes: Is she possibly affected by the condition Trigeminal Neuralgia, which does affect the facial nerves, not muscles? I also get this painful form of facial nerve zapping from time to time and it's extremely debilitating. It does pass though and seems to come in waves... Only a small subset of those with MS also get this painful condition, sadly. I also recently started taking LDN 3 mos ago in the hope that it helps my MS in time, but it hasn't yet stopped the TN from rearing its ugly head from time to time. Rae +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Rae, That's something to look into. Thanks. Is there effective teatment? Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 ONLY ABOUT 25 OF PPL DX'D WITH MS HAVE MARBURG'S VARIANT. IT IS THE RAREST AND DEADLIEST FORM OF MS. HOPE ALL IS WELL W/YOU. TAMMYBren <TwisterAlley2@...> wrote: > OK...a friend of mine says she has finally been dx'd w/a rare form of MS only affecting her face & muscles...not her nerves. Supposedly she's been dx'd in the past w/Bells Palsy, Hashimotos, poss Lupus, but now she found a doc who's told her this. Not a result of a MRI or Spinal but by a viral profile. I've looked and I've read about everything about MS, but I've never found this. The doc even told her she could 'beat it.' I don't know yet if they are pushing the CRABs or chemo. > > I'm just wondering if anyone else has heard of this? > > Marcie >__________________________________________________ Quote Link to comment Share on other sites More sharing options...
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