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@Jimmy369VT 

29 Jul 2025 21:10

Jimmy369VT

Since I have moved to Florida from Vermont, I have been learning a lot more about MS as it’s whole until I actually found a neurologist that was actually specializing in MS. I did not know that not only is it a nervous system problem, but it is also autoimmune and I did not know That extreme cold and extreme heat can actually make flareups worse and if it is hereditary, it can also make the MS come out quicker. I did not know that I did 13 years making snow at a ski resort in Vermont and then when I moved to Florida, I did Five years underground construction and I always wondered why I felt funny and triple digit heat, but it wasn’t heat stroke, and there were days where if it got below zero or into the negative temperatures, my body would tighten up intense up like I was getting squished by a bow constrictor. I went years until my primary care physician told me to go see a neurologist, and then he gave me the evaluation told me to take an MRI. They did not find anything in my spine, but my brain said a lot is what the neurologist said, and then he started poking and stab in the bottom of my feet with stuff and doing a tuning fork all over my body and when I told him I couldn’t feel it in certain spots and then in other spots, I could just slightly feel it or it just felt like a ant crawling on my leg or on the top of my foot. I’ve never seen anybody that evaluated me for anything get so concerned, looking on their face and then now he wants me to do a spinal tap, which I am doing August 8. I already know it’s not going to be like the movies or television shows where it’s gonna be excruciating painful off the back. It’s going to be the next day. I’m going to have to recuperate. I have several family members with MS as well so they are kind enough to give me peace of mind explaining to me how they felt after all the stuff they had to do and I am pretty much doing the same thing and my neurologist did put me on something. I can’t remember the name of it or pronounce it but my flareup weren’t so bad, but then my colitis started getting worse so he took me off it and now as long as I just stick to easy tasks, I’m not so bad but it hurts sometimes to move. I can relate to how my mom felt towards the end now, she said she was in so much pain, but because her mind was slipping back into a childish state of mind. She had good spirits about her. My dad just turned into a zombie and he said that he only focused on walls or focused on watching a television show because it was the only way he could control the pain. I meditate to help with my pain and I listen to the doctors and follow my prescription regiment, but there are still days where it feels like I got hit by a truck and I just stood up out of bed. The scary days are when I can’t get out of bed altogether. I do not know if anybody else has ever felt like this, but there are days where I wouldn’t wish this on my worst enemy and to get places of business to understand what you’re going through and to explain to them OK if you have me do these tasks then don’t expect me to come to work tomorrow because I won’t be able to move. I have been rejected so many times my wife just finally decided to fill out for disability and now between my attorneys and Social Security I have my doctors not only giving me tests and labs for their peace of mind but now I have them filling out papers and forms for my attorneys and Social Security and it’s been like that for almost 3 years now every time I think we’re getting close I have more papers in the mail for my doctors to fill out or my neurologist there are days where I just wanna give up but then I think about what it would do to my family and then I sit with my son and play video gamesuntil the feeling goes away, and I snapped back into my normal self

First posted on the Shift.ms app

@car crazy 

24 Jul 2025 18:44Last reply 25 Jul 2025 01:57

car crazy

What do you do to help beat the heat? My symptoms go crazy in the heat. I keep cold packs in the cars that I can use as needed.

First posted on the Shift.ms app
9

@tingilingi 

24 Jul 2025 03:44 EditedLast reply 24 Jul 2025 04:29

tingilingi

My story(open for tips and tricks 🥰)

Hi guys, here's my story. I guess it would be nice to share it with people who would understand how I feel. It all started with my overworking myself at my nursing job. I noticed that my back is tingling when I bend my neck but I ignored ofc because I thought that it must be pinched nerve.. I never ...
Neu-Ulm, Germany
First posted on the Shift.ms app
2

@royt 

21 Jul 2025 09:17Last reply 25 Jul 2025 20:00

royt

Body temperature

The night sweats are so awkward lol I wake up with top half of my legs so hot my boxers between my legs soaked in sweat yet bottom half my legs so cold they feel like they are in ice. The fun of life with ms.
Jersey Shore, United States
First posted on the Shift.ms app
8

@lilikoi 

17 Jul 2025 00:50Last reply 17 Jul 2025 23:20

lilikoi

Those on Tysabri, how has it affected your immune system? I’ve got a 3 year old, so colds ect are more prevelant for me.

First posted on the Shift.ms app
9

@skezz 

11 Jul 2025 21:09 EditedLast reply 14 Jul 2025 20:12

skezz

Aircon in the uk?

Hi, anyone in the uk got aircon? Built in or portable I’d like to know how much these are and which portable ones are decent as I know they cost less. I physically can’t stand this heat any longer I’ve never been so uncomfortable. Sleeping outside has become a genuine consideration and I’m at wits e...
First posted on the Shift.ms app
14

@show 

6 Jul 2025 18:26Last reply 27 Jul 2025 17:20

show

My hands and fingers have a numbness like they are in icy cold water . Has anyone experienced this ? If so what do you do or take for it ?

First posted on the Shift.ms app
36

@nanny82 

30 Jun 2025 04:56 EditedLast reply 30 Jun 2025 23:13

nanny82

It's been so hard these past couple weeks, last week I was moving something lift it and my back snapped. Its getting better now thank God. Then the heat, I though I was ok because after been diagnosed last winter I realized I had cold sensitivity so I was hoping the summer wouldn't be a problem. Now the heat is here and I'm STRUGGLING. I feel heavy, like I'm walking through wet cement or sand. They say exercise helps with fatigue and we need the sun for vitamin D. I'm so tired...I feel like just crying, I really dont know what to do to help with these feeling. This disease sucks real bad, I'm so tired. What are some things you guys do to help with the fatigue.

First posted on the Shift.ms app
11

@faybems 

29 Jun 2025 19:40Last reply 29 Jun 2025 21:26

faybems

Bloody ‘ot!

Good evening Ladies, gentlemen & fellow hot MSers! I’ve discovered a chill tube! It’s under £10 online.. it’s like an ice pop type thing that is reusable.. freeze it and pop it round your neck! The coldness doesn’t last for too long, but certainly helps you to cool down! I’m over the moon with min...
First posted on the Shift.ms app
4

@PinkRoses19 

26 Jun 2025 16:48Last reply 26 Jun 2025 17:36

PinkRoses19

Shingles vaccination

Has anyone else had a reaction to the shingles vaccination? The first vaccination left me with cold symptons for a few day but the second vaccination had quite a different reaction - violent shaking, very cold, my right leg unusable and feeling very ill for three days. It's over a week later and I s...
Chichester, UK
2
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