First I've heard of the MS Hug!!!

I'm new, and reading 'MS Hug???' a few posts back was the first I've heard of the MS hug, and I'm literally in tears.  I didn't realize my chest pains could possibly be related to my other symptoms pointing towards MS.

I've had chest pain/tightness/pressure for years that comes and goes, and usually is painful enough to cause shortness of breath.  It goes from my ribs/chest all the way around to my back.  It was practically my very first symptom!

And I have always told the (many, many) doctors that it comes and goes, weeks at a time...and I've always been treated like it's anxiety or depression.

The last time I called my current (VA) doctor about chest tightness, they called me in immediately, ruled out heart attack, sent me for an X-ray, and sent me home.

When the doctor called to tell me the x-ray was fine, she literally said "okay...well take care of yourself."  THE END.  Since it wasn't a heart attack or break of some kind...I guess it's nothing at all.

Hearing that other people have had similar symptoms makes me feel like maybe I'm not nuts...maybe there IS something going on...maybe I'm not just lazy, and complain too much.

Still in tears....what a validation.

All that being said...I have a new neck/chest/back pain that until the wee hours of this morning I didn't consider could be related to my other symptoms.

I can barely move my head, and I can't sleep.  I don't know whether to wait it out, or call my doctor for a sooner appt.

Does anyone have similar?  Or maybe this is just a pulled muscle, or something unrelated??

[COBOB]

"MS hug" is "pulled muscles."  It is a form of skeletal muscle spasticity typically related to spinal lesions..  I don't have MS hug.  I have spasms in my feet, lower legs, and left upper back.  Antispasmodic  drugs (zanaflex or baclofen) and skeletal muscle relaxants (flexeril) can help.

Talk to your doctor.  This is a symptom that they can do something to relieve.

Bob

[Weatherbee]

Thank you.  I've been treated like I was exaggerating or making things up for so long, I still feel hesitant to talk to anyone.  But I will give them a call, and we'll see what happens.

Thanks!
Teresa

[COBOB]

That's why I don't use my VA benefits.   I work for a company that has great health care insurance programs and I take advantage of them.

Bob

[Weatherbee]

I can understand that.  I am a stay at home mom, and my husband's benefits aren't very good, and are VERY expensive.  At this point, I go back and forth on whether to keep going to the VA, but they're free, so that's hard to turn down.  It's a tough choice.

Teresa

[jensequitur]

Hey, let me explain a little more about that darn MS hug.  

As COBOB said, it's related to spinal lesions.  The nerves connecting to that bad spot are going to be receiving/sending some bad signals.  Sometimes I get buzzing and tingling around the spot in my back, sometimes muscles around that area cramp up, and sometimes the pain goes all the way around and ends up at my esophagus, which then cramps.

Many people experience a paresthesia around the torso like banding or pressure.  I guess that's why we call it the 'hug.'

I take six baclofen a day, and flexaril when the spasms start to break through the baclofen.

[doublevision1]

I'vae had the MS hug, at its worse during the massive flare that culminated in my RRMS dx.  It was much as you described: a severe sensation of tightness that gripped my ribcage.  My breathing was shallow, it was difficult to talk very long as breathing felt so laboured, even eating too large of a meal made it feel worse.  Rolling over in bed was a major effort.  

Fortunately for me this was never misdiagnosed as a cardiac or anxiety issue, as I also had a multitude of other neurological symptoms and positive MRI which made my MS very obvious to all the physicians I dealt with.  My MS specialist attributed this specific symptom to a lesion on my thoracic spine, which did not show on MRI but he believes is there given features of this symptom being consistent with lesions at that level of the spinal cord.  Unlike many neuros I have read about here, he understands that just because a lesion isn't apparent on MRI doesn't necessarily mean it isn't there.   He pays attention to what I tell him and what he observes in addition to MRI findings (or lack thereof).

I should also add that IVSM helped tremendously to give me relief from this symptom, much more so than symptoms like double vision which took a year to resolve, or paresthesias in my extremities which didn't improve much as all.

[Blueeyeswink]

Anonymous said...
Hello
Louise said
I am not certain if anyone is reading this blog but I happen to come to it today. I have been researching the MS Hug concept as I accidentally found some reading on the topic and was dumb founded as it is the first thing that I read in four years that actually describes what I have been living with since 2006. It has been a long haul of constant pain and taking narcotics to take the edge off. Never feeling near a solution or understanding of what I was feeling. Doctors looking at me dumbly not knowing what to make of what I was feeling other than naming it "neuropathy" or "neuropathic pain". It started after a bad case of ecoli which left me hospitalized with complications. I have no diagnosis but I do know that my life has not been the same since. Lots of mid rib/back pain, bra line and when it is bad it embraces me all around the mid to lower torso, making sitting up very painful  and I have visions of throwing myself off a building because it feels like there is no amount of narcotic that can bring me relief. I have since accumulated a long list of other symptoms (constipation which they call IBS and is blamed on the e-coli, huge bladder output, always on the can the second I sip water, ongoing pain, waking up with body/limb numbness and heaviness - which is freaky, fatigue, lessening physical activity, falling accidents - I can't tell if I am clumsy or what etc...all of which cause interrupted sleep and so I get to take zoplicone and even with this sleeping aid my symptoms insist on waking me up at least 2 to 3 times a night. They say I am stressed and so I just keep working because I am only stressed. I know better but I still buy into the stress theory. Now my doctor tells me you are depress because of your physical symptoms and not depressed and therefore having these symptoms. It took her four years to come to this conclusion! I could have told her that and actually did. If I had no pain, I would have no worries and little stress. I can't do many things that are physical (digging, shoveling, lawn mowing, vacuming etc). I do but then my pain gets really bad. It is just nice to know that I am not entirely crazy as this pain does drive me crazy! This pain may be MS Hug. So I saw a neurologist (finally), I will make her a map to show her the progression of things. No one tells me I am imagining this pain but no one has called it much of what would make sense. I have a brain scan in two weeks...as crazy as it sounds, I really hope they find lesions because that would answer many questions. My doctor did MRI on the upper, lower and mid back...everything seemed fine except for some compression...oh the idiot didn't get a shot of the actual area that is hurting me the most! I saw a gastro guy, a bladder guy (he said it was some women thing as my reason for incontinence and told me to not get up too soon and make sure I was done before getting up from the toilet. and I have an overactive bladder - really I even knew that I just want to know why I have an output of 3+ litres a day when I don't even come close to drinking that much), I saw a rheumathroid arthritis guy who said I had sligh scoliosis of the spine and bursitis of the hip for which he could give me a courtesone shot if I wanted. I went to a rehab specialist a year after my complications to ecoli and she tried to inject some stuff at about T7, 8, 9 but no result. I go to the pain clinic and they torture me with fluroscopies, injecting steroid, confusing the nerves etc and limited results. THe only thing that feels awesome is when they do the local anesthetic of the area. I could move mountains because I feel nothing. So hence my frustration!