It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 07-24-2011, 11:06 AM   #1
Senior Member
(female)
 
Join Date: May 2011
Location: NY, NY
Posts: 142
KingBaxter HB UserKingBaxter HB UserKingBaxter HB UserKingBaxter HB User
How does heat affect MS?

Hi all. I was just diagnosed with possible MS in May after having optic neuritis. I have 1 consistent lesion and this was my first symptom ever...so maybe it's very early on and the reason I have to ask the question below.

My Dr told me to keep cool and I keep reading so much about the adverse effects from heat...but i dont feel any different in the heat at all. I am wondering because we are under a serious heatwave here in NY and I keep waiting for something to happen. But i dont know what i'm waiting for. I was out with my husband on our boat for a couple hours this morning and the whole time (and every time) I am just consumed with feeling like I am waiting for something to happen. And it was HOTTT out there today!

So when someone says the heat is really having an impact on their MS, what does this mean exactly? Does it make prior symptoms worse? New symptoms? Pseudoexacerbations that i keep reading about? Just make you feel lousy? I just dont know.

Thank you all for any info you can provide!!

 
Sponsors Lightbulb
   
Old 07-24-2011, 11:47 AM   #2
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,633
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: How does heat affect MS?

Heat effects on the MSer really vary. You might find that you have a trigger point to avoid. I have both a high and a low trigger trigger point which may vary by humidity (heat and wind chill indexes).

Your body has a "thermostat" which regulates your body. The entire mechanism for your body uses the nervous system. Because your nervous system has electrical current interruptions due to the lesions, this can cause your "thermostat" to go on the fritz. For me, this can mean profuse perspiration which seems to take forever to shut down. Staying well hydrated and cool is important for me.

Back in 1982 my neuro told me to avoid any hot showers above my shoulders. As I have progressed, I have tended to avoid it completely. The one exception is when I use the heat to kill my pain. I get lower back pain which travels into my legs and can last for months. I have found that the same heat which can disable me can also disable my pain. (This is a different story!)

You might go a lifetime and not be affected by the heat. It really depends on the individual. Listen to your body and take precautions as needed- ENJOY LIFE!!

__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
The Following User Says Thank You to MSJayhawk For This Useful Post:
Yolanda72 (07-16-2012)
Sponsors Lightbulb
   
Old 07-24-2011, 12:23 PM   #3
Senior Veteran
(female)
 
Join Date: Nov 2007
Posts: 1,004
Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
Re: How does heat affect MS?

Hello KingBaxter,

Heat intolerance is very common for those with MS. Heat intolerance can affect each person differently. It could be more fatigue after being out in the heat for even a short time, an increase in symptoms, weakness, difficulty walking, blurry vision, or any number of symptoms a person may have.

For many, the symptoms of heat intolerance are considered a Pseudo-Exacerbation. Unfortunately, for me, heat has caused 4 or my 5 exacerbations...I hate summer

There are those with heat intolerance, cold intolerance or both heat and cold intolerant. If heat doesn't bother you then relax not everyone is heat intolerant --- just be aware of any changes you notice due to temp. and take appropriate action, ie: getting out of the heat or cold and getting your body back to the temp you feel comfortable at.
__________________
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

 
Old 07-24-2011, 07:14 PM   #4
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,898
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: How does heat affect MS?

Kingbaxter, I live in NJ, about 20 miles from NYC and I was actually in the city seeing a show today. Where I live the heat and humidity are exactly like you experience.....my experineces are unlike yours.

What Snoopy said can happen to people, all of it happens to me. When I get overheated from the heat/humidity, I get dizzy, short tempered (actually unable to cope with stress) , off balance, extreme pain in my already compromised neuropathic areas (my hands and fingers especially) and occasionally vision distortion. If I keep my body cool, as in stay wet in a pool or get in and out of the a/c- Im usually fine. Hence the train ride into the city was fine today, a/c train...and instead of walking the 8 blocks to the theatre we took a cab (again I was fine) and today wasnt nearly as bad as the last 5 days have been.....but when this heat wave started, I seriously considered not going to the show. Im glad I went, and I returned just fine.

I didnt realize I was this heat sensitive at first....but when I was first dx with MS (onset symptom, numb and tingling hand) the MS nurse started taking my H & P (history and physical) and one of the things she asked me was about heat sensitivity. That was an "AH HAH" moment for me. I can remember the summer before I was diagnosed, I used to get out of a hot shower (loved hot showers) blow dry my hair and wind up on the bathroom floor in tears! I was disoriented, confused, and dizzy and had no idea why....since then, it has progressed and Im now aware that its not just hot showers which do it to me... but not everyone is heat sensitive. There are alot of people, who as soon as it gets cold, start to feel it. I, could live naked in an igloo and be very happy. Again, we have similar winters- you know how bad last winter was? I didnt wear a coat all winter. Like Snoopy, I hate summer. Im praying for fall to come as soon as possible, better yet, LET IT SNOW!

No two cases of MS are exactly alike...remember that. This is a very individualized disease.
Hugs,
Nikki
__________________
RRMS- dx 05

 
Old 07-24-2011, 07:57 PM   #5
Senior Member
(female)
 
Join Date: May 2011
Location: NY, NY
Posts: 142
KingBaxter HB UserKingBaxter HB UserKingBaxter HB UserKingBaxter HB User
Re: How does heat affect MS?

Thanks everyone for the info. Now I understand. I was seriously afraid i would get too hot and not be able to walk or use my legs at all. I kinda knew that the reaction to heat would be different for everyone too, as I am learning everything with ms is. Again, thank you all for your help.

 
Old 07-24-2011, 08:23 PM   #6
Newbie
(female)
 
Join Date: Jul 2011
Location: New Orleans
Posts: 3
shpc HB User
Smile Re: How does heat affect MS?

Hi KingBaxter,

This is actually my first time replying to a post-- mainly because I feel that my experience is most relevant to yours and might hopefully provide you with some answers and/or relief.

I was diagnosed in Nov of 2010, after one CIS (clinically isolated syndrome) and several symptoms occurring for a period of 6 months prior. Up until the point of my dx, and for several months after, let me just say that heat was the LAST thing that caused me any problems whatsoever. I was an avid fan of the heat and humidity, and I live in New Orleans of all places! I would run, walk, and bike in the middle of our searing summers, and be just fine. If anything, I was convinced that cold was my biggest enemy (after 1 brutal winter in Washington DC). It was not until about May/June of this summer (2011) that I began to experience problems with heat-- mind you, this was after I had experienced my second CIS, and had the lesions to prove it, which may have prompted the sensitivity to heat-- And boy did this knock me off my feet. I ended up "stranded" at a very well AC'ed coffee house in the French Quarter-- inexplicably exhausted and nearly terrified from a cloudy mind, tingling legs, and burning feel in my brain. My muscles felt like they had been exposed to severe conditions and I had trouble walking and keeping my balance. In addition, I could not speak or think very well. I was too scared to walk home (about 1.5 miles of pleasant shops and restaurants) and too embarrassed to call anyone for help (mind you, my husband was in a meeting at the time, and he eventually "rescued" me). It was scary, to say the least, and extremely sobering. I quickly learned that heat DID affect me, and very seriously. I have since taken drastic measures to avoid long, hot walks or anything that would force me to be outside without a cold place to cool down. Air conditioning has become my best friend, and for this reason, I am extremely grateful to be alive in the 21st century! I do not blame the weather, I simply have learned to adapt. I have even recently ordered the MSAA's cooling vest, wristbands, and anklebands -- But I must warn those interested, they are not nearly as easy to conceal as they might lead you to believe! But, if you JUST want to be cool and don't care what they look like, they are WONDERFUL> Like a little slice of heaven.

I must also add that I absolutely LOVE to take a hot bath at the end of a long day. It is the best way for me to unwind and always has been. I still do this, but I just make them a little less hot and stay in for less time. I am still able to enjoy them, but must be sure not to get too hot. Also, I often have a cold glass of water to drink while in there and after I get out to keep my body temperature stable.

SO, I suppose the BEST advice from me is that although you may not have any heat symptoms for now (and you very may never will), please be cautious that they can appear and can be a bit disorienting. Just always make preparations for a situation that will force you to be in a hot environment.

I wish you the very best of luck. If MS is the official diagnosis, I recommend returning to this site. It offered some truly calming words of wisdom for me when I was first diagnosed and very scared. Hearing others experiences has a sort of tranquil effect, I believe, and I hope it will be as helpful to you as it has been to me.

All the Best,
SHPC

 
The Following User Says Thank You to shpc For This Useful Post:
KingBaxter (07-26-2011)
Old 07-25-2011, 07:20 AM   #7
Newbie
(female)
 
Join Date: Jul 2011
Location: Northeast
Posts: 6
Rebiffer88 HB User
Cool Re: How does heat affect MS?

I was also dx in May and live in NY. When I get too hot I feel sluggish and my legs and feet geel heavy and I start to stumble slightly. I get crankier in the heat as well, but that might be a personality thing, haha. Good for you that the heat hasn't affected you! I miss jogging and long summer walks. I haven't let it affect my 10 mile bike rides though.

-Nikki

 
Old 07-25-2011, 12:19 PM   #8
Senior Member
(female)
 
Join Date: Apr 2010
Location: Western New York
Posts: 248
JodiH HB UserJodiH HB UserJodiH HB UserJodiH HB User
Re: How does heat affect MS?

I had to reread SHPC's intro twice as I thought that maybe it was mine and dated from a long time ago.... I was also diagnosed with CIS in mid 2010. I wait and wonder when the heat intolerance will kick in if at all. I have always had this weird thing where my legs get extremely itchy if I exercise heavily and several others posted the same thing--perhaps the body's inability to release heat. When I was experiencing the latter part of my CIS I was in Cancun and I felt generally offbalance and dizzy each day until night and my ritualistic evening hot bath wasn't as appealing. Since my episode ended and I feel I've rebounded including another trip to Cancun, I feel great and see no impact of heat. Sometimes I do feel sluggish and heavy legged etc but I can't exactly say it's heat related. I would be curious if you can share more about your potential diagnosis--it sounds very good if you only have one lesion. I have three. Do you have a diagnosis of CIS and have you started treatment?

Last edited by JodiH; 07-25-2011 at 12:21 PM. Reason: wrong fact

 
Old 07-25-2011, 02:14 PM   #9
Newbie
(female)
 
Join Date: Jul 2011
Location: Baltimore, MD
Posts: 3
MSFighter HB User
Re: How does heat affect MS?

I was just diagnosed with MS in April and have since realized that the heat is a severe problem for me. I never thought about it before but I can recall a few instances where the heat made me dizzy and almost black out in extreme circumstances. This summer has been awake up call for me and seeing that I am only 33, it may lead to moving somewhere with milder temperatures in later life. The humidity seems to bother me the most and where I used to love summers they are no longer a friend. I hope that you are one of the lucky ones who never has to experience this symptom.
__________________

Newly Diagnosed RRMS 2011
Copoxone since June 2011

 
Old 07-25-2011, 03:34 PM   #10
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,633
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: How does heat affect MS?

Quote:
Originally Posted by MSFighter View Post
I was just diagnosed with MS in April and have since realized that the heat is a severe problem for me. I never thought about it before but I can recall a few instances where the heat made me dizzy and almost black out in extreme circumstances. This summer has been awake up call for me and seeing that I am only 33, it may lead to moving somewhere with milder temperatures in later life. The humidity seems to bother me the most and where I used to love summers they are no longer a friend. I hope that you are one of the lucky ones who never has to experience this symptom.
MSFighter, I hear you. Summer used to be a great time for me. WHen my MS rapidly worsened in 2002, summer became my time for hibernating, but so did winter. Autumn and spring are my favorites, BUT I have noticed that during the seasonal transitions some of my worst cycles occur.

I agree that as you get older you might want to consider moving. I have often tried to find the ideal location, but it continues to evade me. I suppose I would need 2-3 different locations and stay mobile! Well, as that is expensive, I have learned to accustom myself to hibernation!

__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 07-25-2011, 07:54 PM   #11
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,898
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: How does heat affect MS?

Hi everyone. I just wondered, did any of you notice that each of us who has severe heat sensitivity lives in the northeast region? Between "northeast" , NY, NJ - we all live in the highest humidity on the east coast....and now- New Orleans, which has its own set of issues with heat and humidity. Interesting! Having traveled all around the world, I have been in the desert when its 110 degrees outside and felt FINE. I have been in Canada where it is -20 degrees and felt GREAT. Its the humidity which is our enemy more than anything else.....explains why wet heat ( a hot bath or shower) also can do us in so quickly.

I have the cooling vest, ankle and wrist bracelets as well- but my favorite cooling device is my boonie hat, which has the same chill material in it. I can either take out the ice inserts and freeze them, reinserting them in my hat, or I can soak the entire hat in ice water, which stays cool up to 5 hours. Its been wonderful to me, and people love to tease me about my "bad hair days" most of them dont know its not the bad hair Im concerned about, its the heat!

Everyone? We are almost past the hottest days of summer. Fall is coming and I wish you all ability to stay cool until we get there! Stay well everyone.
Nikki
__________________
RRMS- dx 05

 
Old 07-25-2011, 10:40 PM   #12
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,633
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: How does heat affect MS?

Wet heat or dry heat, both do me in quickly. I think the dander of wet heat is that your body has almost no chance to cool off as the perspiration cannot evaporate. The farm tractors used to have evaporation air coolers, but the coolers did not work well in the humid seasons.

I think some MSers can be more acclimated to the region in which they live or they slowly grow more intolerant. We have just been through 5 weeks of triple digit temps and I have been knocked back each day.

I agree that the cooling equipment is great. I would also add that much of the equipment is available on loan without charge via the MS Association (where I got mine). 2 months till autumn!

__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 07-26-2011, 05:38 AM   #13
Senior Veteran
(female)
 
Join Date: Nov 2007
Posts: 1,004
Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
Re: How does heat affect MS?

I have lived in a State with low humidity since before diagnosis and Heat is still a major problem for me.
__________________
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

 
Old 07-26-2011, 04:48 PM   #14
Senior Member
(female)
 
Join Date: May 2011
Location: NY, NY
Posts: 142
KingBaxter HB UserKingBaxter HB UserKingBaxter HB UserKingBaxter HB User
Re: How does heat affect MS?

Quote:
Originally Posted by JodiH View Post
I had to reread SHPC's intro twice as I thought that maybe it was mine and dated from a long time ago.... I was also diagnosed with CIS in mid 2010. I wait and wonder when the heat intolerance will kick in if at all. I have always had this weird thing where my legs get extremely itchy if I exercise heavily and several others posted the same thing--perhaps the body's inability to release heat. When I was experiencing the latter part of my CIS I was in Cancun and I felt generally offbalance and dizzy each day until night and my ritualistic evening hot bath wasn't as appealing. Since my episode ended and I feel I've rebounded including another trip to Cancun, I feel great and see no impact of heat. Sometimes I do feel sluggish and heavy legged etc but I can't exactly say it's heat related. I would be curious if you can share more about your potential diagnosis--it sounds very good if you only have one lesion. I have three. Do you have a diagnosis of CIS and have you started treatment?
I was diagnosed in May after a bout of optic neuritis. I was admitted to the hospital for iv steroid treatment and my eye began to improve significantly after the first treatment. The improvement has been much slower since then. I just had a follow up with my neuro and retina spec today. The retina spec told me that the nerve and optic disc are completely healed. But my vision is not perfect. he said it will likely continue to improve. It is very close to perfect and i can only tell the difference when I compare things by closing one eye and then the other. With both eyes open it seems perfect. So this was the first symptom I have ever had. I have racked my brain trying to come up with something in the past i may have brushed off but i come up empty every time.

I actually have 3 lesions in total also. Sorry i threw you off by saying only 1 consistent lesion. My neuro says 2 of them are very old and are not consistent and can be from many things, and he is not concerned about those at all. I was in a car accident when i was 18 (34 now) so thats possible. The third is newer and consistent with MS. While in the hospital I had an MRI and spinal tap. The spinal tap came back normal. So technically i had a CIS, am at very, very high risk to develop cdms, and the diagnosis is possible ms.

With optic neuritis and even 1 lesion, i think there is at least 80% chance that i will develop cdms. So yes, i have started treatment. I am on Rebif -- staying at 22 mcg. I spoke with my neuro about that today and expressed some concern. He still thinks i should stay at 22 mcg. He said if i really want to change we can do that at any time.
I remember when my sister in law had breast cancer last year (she is in total remission now) and she had the option to go through radiation which would signifigantly reduce her chances of getting it back...i remember thinking why would she not do anything that has any possibility at all to reduce the chances of it coming back. I know the side effects are serious for some, but luckily i have no side effects at all except red marks at injection site.

Thanks again everyone. I would be lost without this board!

 
The following user gives a hug of support to KingBaxter:
rissie (07-26-2011)
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
does this sound like MS sara89251 Multiple Sclerosis 23 02-18-2011 04:40 AM
Help, does this sound like MS? lilcee Multiple Sclerosis 4 02-16-2011 07:00 PM
How does fever affect you? redwonder Multiple Sclerosis 4 04-13-2010 07:14 AM
Does anyone else have this symptom? skittles73 Multiple Sclerosis 24 10-16-2008 02:24 PM
Effects Of Heat cindys601 Multiple Sclerosis 8 09-27-2007 02:37 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 05:55 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!