yellowgenius

Heat and MS

Posted on 06/22/09, 10:50 am

I keep reading and hearing that a lot of peoples MS is affected by the heat—I have not had this be the case for me, is that normal? I have had this thing for almost 14 years now and the lack-of heat thing is making me think I may have been misdiagnosed? Could this be the case or am I one of the ones that heat does not matter?

• Reply #1 06/24/09  4:12pm
  
  Nellynumb
  Not everyone with MS is heat sensitive hon, I wasn't in the beginning but it is getting worse now, my face gets tingly and my balance goes off, but no not everyone has it hon. :-)
• Reply #2 06/25/09  2:40pm
  
  LarryLDN
  heat slows me down, cold makes things much worse than heat does
• Reply #3 06/27/09  2:45am
  
  sherryalton
  i am affected much worse by the cold--but heat zaps me too--ms sux
• Reply #4 06/28/09  7:53am
  
  oneblh
  heat turns me to a noodle, cold is like the noodle before cooking. :)
  
  
• Reply #5 07/17/09  5:43pm
  
  BobbyJ
  I have how the heat affects me down to a science. My cutoff point for misery is 84 degrees. Once the temps hit that, MS makes me a mess!
• Reply #6 07/21/09  11:21pm
  
  Nellynumb
  I keep my a/c at around 72deg, I can tell the family if someone has touched the control before even looking at it, weird eh, Ive just bought a cooling vest, anyone else tried them ?
• Reply #7 09/27/09  12:08pm
  
  angelbyfar
  I don't know about your diagnosis but scientifically it has to affect you. Heat and cold. The internal heat or cold will always affect how the nerves transmit. I turn into a noodle and can't move. What about when you get a fever? I got a fever once and had to be physically carried to the ER. Once my fever broke I could walk again. I am not on a cane and do not use a scooter. I have a severe case of MS according to Shands MS center because I have so many leissons on my spine. So, I don't know but unless you have benign MS I would think you would have problems with heat. There is such a thing as benign MS where their is just one episode and it never comes back.
• Reply #8 10/06/09  12:05pm
  
  yellowgenius
  I supposedly have had MS for 20 plus years but I have never been affected by the heat or the cold. Also a fever never really slowed me down either. I have had multiple "episodes" throughout the years but all have fully recovered or at least 95% recovered. Everyone I know and everyone I have talked to on the internet who have MS say they are effect by the temp. I also have never had "good days and bad days", for the most part they are all good days except for that rare occasion when I have had an "episode". I have spent the last 10 years of my life researching and meeting with multiple doctors (because I will not accept the fact that my MS is just different). I have never tried any CRAB drugs and the only thing I have taken is supplements and now (since May 2009) LDN—the LDN seems to really be helping with-what-little I have been affected but seems to be acting different for me than others with MS on LDN.
  
  So to make a long story short, my GP0 is now really looking in depth into Lyme disease and we're thinking this thing may not be MS after all. Once I get anymore info I will post.
  
  
  Thank you everyone for your comments and thoughts.
  
  
• Reply #9 10/06/09  12:10pm
  
  yellowgenius
  I my original post I had said 14 years with MS and my last post on 10/06/09 I said 20 plus years, that is because the deeper my doctor goes into my medical history he is seeing more-and-more misdiagnosed ailments in my past that were not true (multiple inner ear infections without any signs of redness or infection—just vertigo, epilepsy without any real symptoms of epilepsy just dizziness, growing pains when I was too old to be having growing pains, etc...).
• Reply #10 10/08/09  10:48pm
  
  sherryalton
  so..how long on ldn--for many it works miracles--maybe why its not as severe--what tests confirmed ms

LDN .. Low Dose Naltrexone 3.0 MG or 4.5 MG ...... Helps ALL AutoImmune diseases not just MS