I just found you on You Tube and I feel like crying! I can't get a diagnosis even with MRI's but I have had so many of the symptoms for so many years! Dealing with heat is very difficult!!! I just got a personal sized electric fan on Amazon. It has a USB recharging cord and fit's easily in my small purse. I'm hoping it will help when I am in a place where I can't escape the heat or I just have one of my random heat attacks.
I am so sorry you are having such a difficult time getting a diagnosis. Keep advocating for yourself! I recently did a video on a cooling vest that may help ruclips.net/video/2Tk1DhuVVsg/видео.html
SIS, SAME I always say that my meat suit is on fire!!! I'm getting tested for ms after several years of issues. I just learned of uhthoffs sign and I've never felt like somethings matched so well with what happens for me
It is really a life changing. I am about to get hired to work in a desert but I’m questioning my abilities. I have optic neuritis and I can feel the symptom gets worse when I’m in a hot place.
Oh wow, congratulations on the new job! There are things you can do to help with the heat like cooling vests and towels, staying hydrated, and moisture wicking clothing. Good luck!
do your eyes get better I'm asking because I lost vision in one eye, they gave me cotico steroids and now a month later both my eyes are worse and they just gave me the same thing again. Btw i'm a painter so i really want to know how to fix this. My vision now is still bas but not terablle. But I don't see colors as much and I don't see the center of where I'm looking at + everything is blurryer. Sorry for bad english nd no grammar
I had this condition for years but I have recently moved to the Central Valley and heat out here made me VERY ILL! I was outside in the heat for like 10 minutes and then, I started to feel seasick and nauseous as if l just got off a rollercoaster! I became lightheaded and fatigued and also lethargic. I became foggy and couldn’t think straight. We live in a smart house and the AC unit was running downstairs and upstairs but my body just couldn’t cool down. I had my wife take me to the ER as I felt like I was going to die. I did bloodwork and took a EKG test. My doctor told me that my results were negative and that everything was fine. Maybe it was just heat exhaustion? I need to find out if I have MS or this Uthoff phenomenon.
Thanks for watching. I am so sorry you are experiencing this. Definitely bring these symptoms to your doctor and ask what could be causing it. Heat exhaustion, dehydration, or other conditions, including MS, could be contributing to it. Keep advocating for yourself and asking for second opinions or referrals.
When it happens to me, it usually lasts until a little while after i cool off. My whole body gets very weak and i shake really bad all over. My vision gets really bright, but thats usually the first thing to go back to normal.
I live with someone who needs heat and hates cold. I hate heat. I need coolant, but the person I live with controls central air I am not considered I am ignored. The central air is controlled by roommate and roommates. Comfort comes before mine. What I am saying is that I suffer because central air is too warm for me but perfect for a roommate hates cooling. What can I do but suffer.
Oh no. If you have your own room can you get a small portable unit for your room? You could try a cooling neck wrap too. I also find if I sip ice water it helps. I did just get a cooling vest and I gotta say, it is pretty helpful ruclips.net/video/2Tk1DhuVVsg/видео.html
Sadly no. Life has become a mixed film of Catch 22 and Groundhog Day. Thankfully, there is an enormous amount of stupidity to witness to keep me laughing daily.😁
I have been saying for several years that I may have MS. I’ve noticed lately that it’s becoming increasingly difficult to use my right arm for any length of time. My arm buzzes and goes cold and difficult to use. Sometimes those fingers lock up. I also have fibromyalgia. Also, both legs vibrate - sometimes my whole body vibrates - and my right leg can sometimes be somewhat hard to move independently. Hmmmm…..
@@EvenSoItIsWell no I haven’t. Doctors seem to think it’s nothing except neuropathy. I don’t believe it. I’m going to push it with them for some blood work and an MRI.
Am looking up what heat and cold intolerances are related to, as not diagnosed with MS. See also adrenals function, dysautonomia, B1 deficiency..... I use a bandana or scarf that keeps hair out of face and ears warm in chili weather and if hot, wet it and espec knot at back of neck makes me feel human again. Also tiny ice packs made of those bags for blendered meals.
My vision goes black from nearly passing out. I can't take a hot shower anymore. I think this is what you mean right? It's not a vision issue. My vision and thinking begin to go and I get weak all over and I'm ready to faint.
Looking back I always had problems with the heat. From the time I was a child,the sun was not my friend. I had epilepsy as a child. I would burn even with sunscreen. As a preteen I no longer had epilepsy ,but then had scoliosis. It. was not treated. Scoliosis also made the intolerance to heat worsen,but I didn't know why.Fast forward to 2021 when I developed CRPS after surgery and even more problems developed from the heat. I loved hot showers,when I was able to take them prior toCRPS,. I kept a water bottle to drink as soon as I was finished to rehydrate and immediately sat down so as not to fall or pass out,the door was also open to allow cool air to enter. I also had strange bed time routines in summer like wet my clothing and sleep under a ceiling fan to avoid over heating. And with CRPS I freeze my gel inserts for when my feet over heat,I have 2 pairs to alternate when one goes warm.. I lost my FOMO though because I would rather stay cool and healthy than overheat outdoors,autumn is a much better time to do outdoor activities and sometimes less crowded too. Hey where there is a will there is a way right?😂
@@EvenSoItIsWell O Yes! Winter is a great time to explore for those sensitive to heat=) I also forgot to add a suggestion from my physical therapist: Cryotherapy! She said it can help reduce inflammation from the CRPS and my over reactions to heat. I was reluctant to try ,but once I did in the summer months I fell in love with the results! 3 minutes, or even less sometimes, in the full body enclosed tank(I can't recall the actual word right now). relieved inflammation and overheating for a few days at a time for me. However; you can have sessions up to 2x per day if you need it. Consistancy is key with cryotherapy. Regrettfully I' lost workers comp and need to wait another 6 months to learn if I can qualify for disability(CRPS doesn't qualify in my state so I'm not holding my breath on that), but once can afford to pay for this great service again I would love to resume. Restore Hyper Wellness had wonderful cryotherapy tanks ,awesome staff,plus a nurse onsight. They have other great theraputic treatments offered as well. Highly recommend cryotherapy.😁P.S. CRPS can lead to MS ,which is what lead me to your channel as I believe mine has progressed into MS . However; I still can't get a doc to accept that or test me. I did change pain specialists so I am on a wait list to begin treatment with him and have a new Endo which I will see for the 1st time in Nov 2024. I believe they will hold a different view on testing.
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How do you keep from overheating? Share your tips and tricks!
“I’m so glad they don’t do that test anymore” 😂
Right?!?!
It is hard, I hate to miss out too.
I love your positivity and you are so funny!
Thanks Ling!
I have been aware of my sensitivity to heat for years. Ugh!
It is the pits, isn’t it?
Definitely. What you are saying sounds soooo familiar
Thanks for watching. The effects of heat are no joke.
I just found you on You Tube and I feel like crying! I can't get a diagnosis even with MRI's but I have had so many of the symptoms for so many years! Dealing with heat is very difficult!!! I just got a personal sized electric fan on Amazon. It has a USB recharging cord and fit's easily in my small purse. I'm hoping it will help when I am in a place where I can't escape the heat or I just have one of my random heat attacks.
I am so sorry you are having such a difficult time getting a diagnosis. Keep advocating for yourself! I recently did a video on a cooling vest that may help ruclips.net/video/2Tk1DhuVVsg/видео.html
Yes, me too. It has really helped .
I feel like I’m burning alive
Ugh, that is no fun at all. Do you use any cooling products?
My tremors get extremely worse in heat , is that common ? @@EvenSoItIsWell
SIS, SAME I always say that my meat suit is on fire!!! I'm getting tested for ms after several years of issues. I just learned of uhthoffs sign and I've never felt like somethings matched so well with what happens for me
Apologies for the delay! Yes, symptoms can definitely increase with heat.
I hope you find answers soon!
It is really a life changing. I am about to get hired to work in a desert but I’m questioning my abilities. I have optic neuritis and I can feel the symptom gets worse when I’m in a hot place.
Oh wow, congratulations on the new job! There are things you can do to help with the heat like cooling vests and towels, staying hydrated, and moisture wicking clothing. Good luck!
In the desert? That would be my hell
@Sbannmarie298 living in the desert would be challenging for sure!
do your eyes get better I'm asking because I lost vision in one eye, they gave me cotico steroids and now a month later both my eyes are worse and they just gave me the same thing again. Btw i'm a painter so i really want to know how to fix this. My vision now is still bas but not terablle. But I don't see colors as much and I don't see the center of where I'm looking at + everything is blurryer. Sorry for bad english nd no grammar
I can’t give medical,advice, but it may still get better. Be sure to take exquisite care of yourself to try and lower inflammation.
I had this condition for years but I have recently moved to the Central Valley and heat out here made me VERY ILL! I was outside in the heat for like 10 minutes and then, I started to feel seasick and nauseous as if l just got off a rollercoaster!
I became lightheaded and fatigued and also lethargic. I became foggy and couldn’t think straight. We live in a smart house and the AC unit was running downstairs and upstairs but my body just couldn’t cool down. I had my wife take me to the ER as I felt like I was going to die. I did bloodwork and took a EKG test.
My doctor told me that my results were negative and that everything was fine. Maybe it was just heat exhaustion? I need to find out if I have MS or this Uthoff phenomenon.
Thanks for watching. I am so sorry you are experiencing this. Definitely bring these symptoms to your doctor and ask what could be causing it. Heat exhaustion, dehydration, or other conditions, including MS, could be contributing to it. Keep advocating for yourself and asking for second opinions or referrals.
Interesting, as I practice hot yoga. The studio is heated to 100 plus degrees, 40% humidity. Good info, as I'll monitor this closer.
Thanks for watching. Not everyone with MS experiences heat intolerance. Enjoy your yoga!
When it happens to me, it usually lasts until a little while after i cool off. My whole body gets very weak and i shake really bad all over. My vision gets really bright, but thats usually the first thing to go back to normal.
It really is no fun when it happens. So glad it subsides when you cool off!
I live with someone who needs heat and hates cold. I hate heat. I need coolant, but the person I live with controls central air I am not considered I am ignored. The central air is controlled by roommate and roommates. Comfort comes before mine. What I am saying is that I suffer because central air is too warm for me but perfect for a roommate hates cooling. What can I do but suffer.
Oh no. If you have your own room can you get a small portable unit for your room? You could try a cooling neck wrap too. I also find if I sip ice water it helps. I did just get a cooling vest and I gotta say, it is pretty helpful
ruclips.net/video/2Tk1DhuVVsg/видео.html
I use a waist wraparound cooling pack with a gel pack used for the back. It works great. I wear it under a tee shirt .
Oh! I love this idea! I will definitely check it out. Do you have a specific brand you use?
@@EvenSoItIsWell Cryo Max 👍
@@debcrawford5665 Thanks! I will check it out!
Even worse for me is the constant shift of temperature trying to avoid heat. Heat increases gravity, cold increases pain. There is no middle.🤔
@@mybachhertzbaud3074 ugh, so sorry you experience both. Does staying inside help?
Sadly no. Life has become a mixed film of Catch 22 and Groundhog Day. Thankfully, there is an enormous amount of stupidity to witness to keep me laughing daily.😁
@@mybachhertzbaud3074 Yes, there is an abundance of stupidity to keep us entertained! Keep laughing! 😁
I have been saying for several years that I may have MS. I’ve noticed lately that it’s becoming increasingly difficult to use my right arm for any length of time. My arm buzzes and goes cold and difficult to use. Sometimes those fingers lock up. I also have fibromyalgia. Also, both legs vibrate - sometimes my whole body vibrates - and my right leg can sometimes be somewhat hard to move independently. Hmmmm…..
Hi Kelly, I am sorry all that is happening. And on top of fibromyalgia! Have you seen a neurologist yet?
@@EvenSoItIsWell no I haven’t. Doctors seem to think it’s nothing except neuropathy. I don’t believe it. I’m going to push it with them for some blood work and an MRI.
@@Reikinurse19 ugh. Keep advocating for yourself! Ask for a second or third option if you need too! I hope you can find some answers.
Am looking up what heat and cold intolerances are related to, as not diagnosed with MS. See also adrenals function, dysautonomia, B1 deficiency..... I use a bandana or scarf that keeps hair out of face and ears warm in chili weather and if hot, wet it and espec knot at back of neck makes me feel human again. Also tiny ice packs made of those bags for blendered meals.
I love the bandana idea!
This happens to me. My vision goes black. Is this only caused by MS?
Hi Tera, thanks for watching. No, vision problems can be caused by different conditions. Please see your eye doctor to have it checked out.
My vision goes black from nearly passing out. I can't take a hot shower anymore. I think this is what you mean right? It's not a vision issue. My vision and thinking begin to go and I get weak all over and I'm ready to faint.
Looking back I always had problems with the heat. From the time I was a child,the sun was not my friend. I had epilepsy as a child. I would burn even with sunscreen. As a preteen I no longer had epilepsy ,but then had scoliosis. It. was not treated. Scoliosis also made the intolerance to heat worsen,but I didn't know why.Fast forward to 2021 when I developed CRPS after surgery and even more problems developed from the heat. I loved hot showers,when I was able to take them prior toCRPS,. I kept a water bottle to drink as soon as I was finished to rehydrate and immediately sat down so as not to fall or pass out,the door was also open to allow cool air to enter. I also had strange bed time routines in summer like wet my clothing and sleep under a ceiling fan to avoid over heating. And with CRPS I freeze my gel inserts for when my feet over heat,I have 2 pairs to alternate when one goes warm.. I lost my FOMO though because I would rather stay cool and healthy than overheat outdoors,autumn is a much better time to do outdoor activities and sometimes less crowded too. Hey where there is a will there is a way right?😂
@lindacarmelle8333 “where there is a will, there is a way.” Such truth! And I agree, autumn is a great time to get out and winter too!
@@EvenSoItIsWell O Yes! Winter is a great time to explore for those sensitive to heat=) I also forgot to add a suggestion from my physical therapist: Cryotherapy! She said it can help reduce inflammation from the CRPS and my over reactions to heat. I was reluctant to try ,but once I did in the summer months I fell in love with the results! 3 minutes, or even less sometimes, in the full body enclosed tank(I can't recall the actual word right now). relieved inflammation and overheating for a few days at a time for me. However; you can have sessions up to 2x per day if you need it. Consistancy is key with cryotherapy. Regrettfully I' lost workers comp and need to wait another 6 months to learn if I can qualify for disability(CRPS doesn't qualify in my state so I'm not holding my breath on that), but once can afford to pay for this great service again I would love to resume. Restore Hyper Wellness had wonderful cryotherapy tanks ,awesome staff,plus a nurse onsight. They have other great theraputic treatments offered as well. Highly recommend cryotherapy.😁P.S. CRPS can lead to MS ,which is what lead me to your channel as I believe mine has progressed into MS . However; I still can't get a doc to accept that or test me. I did change pain specialists so I am on a wait list to begin treatment with him and have a new Endo which I will see for the 1st time in Nov 2024. I believe they will hold a different view on testing.
You r lying in space in cool breeze .
I love lying in the hammock. You are right, it is the best place to catch a cool breeze!