Many of us cannot tolerate heat, and have heard some have a problem with cold too. I cannot tolerate heat in the summer at all and have a/c and fans everywhere. It gets hot here in the summer too. I love the cold weather...i wear tank tops even in the Winter and i can open my bedroom window when it gets too warm for me in the house...especially at night for some reason.
I have been on copaxone for 8 mo. now and only get site reactions. It really only works on the progression of the disease and slows down flare ups and cannot help any damage that has already been done...i thought that i felt a little better from it at one point but it may have just been a coincidence.
I forgot something, may remember later.........
hugzz, meg
i remember reading somewhere that it does mess with our thermostate- very miserable 4 me
There seems to be a roll on these hot and sweaty feelings among us. I am currently NOT on any DMD, am still menopausal, but still suffering from these hot episodes of sweat on the back of my neck, irritability from a hot environment, some nausea, no dizziness, but still feel warm in what should be comfortable temperatures.
As we age, it is said that we need more heat to keep us warm. I am not finding this true in my case. The cooler it is in the house, they better I sleep. I do not want any heat on at night, in the winter months and even sleep with a fan going.
It may be freezing and very windy outside and I wear my jacket to the car. Not long after being in the car with the heat going, I want to shed my jacket, because I am starting to sweat.
Quix, maybe you can answer this...does this have anything to do with the autonomic part of the nervous system? Maybe that is what is out of whack, for those of us experiencing these hot spells, when other's seem comfortable that do not have MS.
Very interesting thread, Charley.
Heather
I too get these hot sweaty episodes...no Copaxone. Even my head sweats. It used to be now and then, but lately it's all day. I have to keep my hair up cause the back of my neck is wet all the time...and then i am irritable, dizzy, nauseous,etc...Thank goodness it's always below freezing outside so i can get some air.
that is so much to what I feel, I get these Hot spells, and feel nauseated, horrible, irritable, dizzy etc.. I end up taking my slippers, shoes, clothes off.. I try to keep the temp down at home and wear a sweater that I can take off easily.
this can happen for a few days or weeks, then stop.. it's not menopause as I finished that years ago too.
I haven't told my Neuro, as I didn't think it's something to worry about? Not sure about that now.. maybe I will mention it.
take care
wobbly
dx
I am not on a DMD and I have been having really bad hot and sweating attacks. They are similar to the hot flashes of menopause, but those have been over for quite a while.
I am exquisitely sensitive to warm environments. I get weak, dizzy, and irritable. My poor parents need it about 75* and I need it about 65*. I visit them and have a meltdown and they visit me and feeze. It's so odd to see my mom bundling up to come see me downstairs like she's headed for the arctic. She is 86.
The heat in my new bedroom is from a gas fireplace on the wall. I sleep next to it and if the right side of my face gets warm, I have terrible eye pain, just like is described with ON. Weird.
Quix
yes i am on copaxone - havent had nri 2 c if working- need 2-- me to - have the sweats get cold its miserable.
think its part of ms- 4 yers thought it was menapause- i have some people tell me its ms - neros told them that.
but copaxone has done that -some- tick
That is an excellent suggestion! Thanks!!! hugs, Charle
I've not had the symptom with heat in the neck, but I have had a couple of reactions that sometimes comes right after a Copaxone shot. I will get a lot of heat in my face, and my face and ears will actually turn bright red. My heart will also pound. I told this to my neurologist, who told me that I was probably injecting the medicine into the bloodstream. He told me to inject at an angle, to avoid the muscle. If you are a tiny person, you probably don't have much fatty tissue to inject in. You may want to look at injecting at an angle, too. Are you using the Autoinject?
I have a lot of problems with heat and humidity. In the really cold weather I have similar problems and especially when the temps go below 10º. The sweating thing and the heat in my back seems to come on no matter what the temp is. If I could live where it was 65-70º all the time I'd probably have an easier time of it. So far this winter, my symptoms are pretty mild even when I was out doors when the temp was around º. Copaxone? I'd like to think so.
I too look at cause and effect of all these things. Such a mystery. I will talk to my new neuro about all of this. I have lesions but according to the past neuros they are not lined up according to the criteria. I am still amazed that there is such a strict criteria for MS when they all know that MS is such a diverse and confusing disease.
Thanks for all your input, Charley
Part of the reason I commented on your post is that I too have episodes of extreme heat and sweating. Not just a minute or two, but in response to being in temperatures that now are too high for me.
A few hours ago I did some shopping. In the supermarket I was okay. That tends to be cool, of course. Later I was very briefly in another store, not 10 minutes. I was wearing my really warm Lands End parka, and I could feel myself beginning to sweat. Could hardly wait to get out. When I got home and took my coat off, my tee shirt underfeath was soaked. Even my arms were wet.
I have had trouble with heat for some months now. During the summer I ran my AC 24/7, which cost me a bunch, but I couldn't help it. Never done that before. Now I'm keeping my heat at 65, which is 4 degrees lower than last year, and at night I turn it off, run the ceiling fan and sometimes open the window a bit.
The thing is, my symptoms don't get worse with heat, I just get HOT. Not to mention sweaty. All very different from someone who used to freeze long ago, before my hyothyroidism was diagnosed and treated.
I am on Avonex, but can't find any conclusive evidence that Avonex is causing this. I don't even know if MS is causing it. I'm just so sensitive to heat.
So keep looking into cause and effect. Good luck with the next neuro. Many of us have had a whole string of them, but if that's what it takes, then keep at it.
ess
There are no stupid questions. I hope get some better care from the next neuro. If not...the search will be on for neuro # 4. Hugs, Charley
Charley...
I dont feel too stupid now..lol
Its just thats the next step for me and I'm trying to get all the info I can...I know of one other person who is dx'ed with CIS and is starting Copaxone.
I hope you get some definate answers in Jan.
Maybe you already have if the Copaxone is working....
Please take Care, Theresa
Hi, Charley. I did some Googling and found that Copaxone can cause sweating attacks like you describe. You could also be having a new and somewhat different version of paresthesia. Your temperature regulation system could be affected, but in that case I'd imagine you would indeed have a brief fever. I'm no doctor, though, so these are just guesses on my part.
I hope the sweating isn't too burdensome, since you think the Copax is helping. Will you take this issue up with your neuro?
Hang in there,
ess
Tick, are you on Copaxone?
Theresa, I was diagnosed with possible ms and then the neuro told me a couple of months later that I didn't have MS because I wasn't clinically showing up on the mri's. He wanted me to stop the Copaxone, but I made a bit of a stink and he decided not to argue with me. I'd only been on it 1 month when I saw him. I've been on it for about 4 months and it seems to be helping. The neuro told me that I should get another opinion...with an MS specialist. He advertises himself as such so go figure. I do have an appointment with an MS specialist in Jan. Neuro # 3.
Who knows. I think the meds are working. Hugs Charley
i do at times - plus just makes me feel bad sometimrs. but doesnt last long.
heart races some to- a few times my ears got really hot- but usually no side effects.
tick
Charley,
Sorry.....I did not see that you were dx'ed in April.......So ignore that last post.......
I need to learn how to read....LOL...........
Theresa......
Hi Charley,
I have a few questions....
You have not been diagnosed with definate MS but you have started the DMD's?
Do you have lesions?
What convinced the neuro and you to start them?
Sorry so many questions..
I have not been dx'ed with definate MS either but I have numerous brain lesions.I was dx'ed with TM but now the neuro refers to it as high risk CIS (clinically isolated syndrom).My neuro and I had the talk about starting the DMD's and the benefits of starting them early.I see him agin in Feb 2010 to figure out if I should start them.
Take Care, Theresa