MS Hug

By 232ismq

1 min read

I have been diagnosed since 1997 and regularly going to our MS Clinic as well as using Avonex for 5 years... I have spent the last 3 weeks dealing with what appeared to be a heart attack and had been admitted to hospital twice to no avail. ALL cardio work ups & chest X-rays were negative. My wife had found what appears to be most of my symptoms on line as something called MS Hug. Is this real? Do the neurologists' discuss this... anyone have similar experiences?

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Hello. I was Dx'd in 2009 with relapsing remitting but was reclassified this last year as relapsing progressive (which I think was previously known as Secondary Progressive.) I haven't had relapses since year 1 but a steady decline since then. MS hugs are real, mine manifest in my lower trunk. I feel a tightening, often when I stand up after sitting for awhile. I am not able to walk until it subsides, usually in about 30 seconds. When people "catch" me having a spasm (I worked in the corp environment and spent too much time in long boring meetings!), it looks like I'm in severe pain. While I can definitely feel the sensation and can't walk or stand up straight for a moment, it does NOT hurt at all! I just need to give my body a moment to sort itself off. (Needless to say, I usually hung out in the conf rooms and didn't stand up until almost everyone had departed the meetings.) My first neuro wasn't familiar with them and I haven't found very much info online. The MS Assoc of American has an article about pain that mentions this at <a href='https://www.mymsaa.org/publications/motivator/winter-spring13/cover-story/pain/' target='_blank' rel='noopener noreferrer ugc'>http://www.mymsaa.org/publications/motivator/winter-spring13/cover-story/pain/</a> I'm glad your work ups were negative and you were wise to follow-up to rule out a heart attack. I hope these hugs are more of a nuisance for you as they are for me. Have a great day!
msw2222 Member
Hi, My MS hugs grab me around my ribcage. Kinda squeeze the breath out of me. Although not pleasant, I know what it is so I don't panic. Just have to stop what I'm doing... sit down... RELAX as best I can.. and wait it out. (All the while making kinda grunting noises!) Another crappy thing to deal with due to this disease. Some people get them more than others.
4lwx4b Member
I have relapsing/remitting MS diagnosed in 2000. I would get this squeezing feeling across my chest that would last for days. I had this sensation way before I was diagnosed. I had no idea what this horrible numbing, squeezing sensation was until I finally googled it. I figured I was having some sort of heart problem. For me it is generally brought on by some sort of stress I may be going through. That's another issue. Stress can comes from something as simple as an upcoming pleasant event. MS, you certainly keep me on my toes!
pdcown Member
I'm so glad to find some people who are willing to talk about the worst pain there can be. I just had surgery on my hand and the surgeon said this will be the worst pain of your life. I laughed and thought to myself if only he knew he was correct it was very painful but I cauld stand up I did not feel like my ribs were being crushed, if I don't medicate in time I'm on the floor pain thru my body crap myself vomiting I take my clothes off I feel like I don't want any thing touching my body. I remember going out to dinner with friends half way thru dinner it came I ran to my mini van laid in the back in a ball 4 Percocet did not touch it at all. I was taken to the hospital when I entered crawling thru the doors in agony. Get this the nurse asked on a pain scale 1 10 what is it I called her stupid it's 200000. The morphin came my husband said I was drugged but I was still screaming. You talk to the doctor he kinda change the subject I was ready to take my own life I knew I had enough, I tried something different with my diet because I felt like my body was too tied to digest. So I thought I am not going to eat regular foods again I hate vomiting so my meals are protein power fruit vegetables, pro biotic in the milk section. I really think it's helped. I am not interested in food anymore it's no big deal. So I can make a few days supply put in the freezer. I stay away from ice cream I will eat frozen yogurt in my shakes. Did it cure me hell know but I can honestly say instead of 5 episodes a week now it's 2 or 3 the duration is less. It normally lasts 4 to 5 hours now it's a little less 2 to 3. I was happy with myself for trying something. I don't need my doctor he did not care enough to listen. I need to write and tell you about some more research I did for my self. A doctor in France his wife was paralyzed. From the neck down. So he decided to go thru her entire body he found nothing except a collapsed jugular vein he ballooned it and she got up and walked. The research came over to the USA they found all ms patients had one thing in common 90% had blocked vein. I called on a Thursday I was with the doctor on the Monday yes both veins were down and I properly had 2 weeks to live. I also had them ballooned I felt so amazing I had oxygen I cauld breath. Most of my life I had been treated for asthma the Doctors cauld not figure out why I was not responding. See what self help does I can run this Monday I go to New York for a check up. I'm happy to go I love my doctor who cared enough to help me it helped the ms hug. I was blessed. How long will it last not sue but at least I found a problem that cauld be fixed