"Flavors of MS Hug"

[fishead]

I know "MS HUG" is a rather redundent topic, but there seem to be so many threads regarding it that I wanted to ask everyone to explain their MS-Hug.

My "selfish"reason for starting the thread is that I have, what I believe is the MS Hug, BUT it is FAR more painful on my right side (back, side and front). Am I nutzo or does anyone else analyse their pain?

Only reason I analyse it so much, is = the doctors cannot get rid of my back pain, and in analysing it...I, just TONIGHT, realize I actually have pain in my back, AND the paincurves around my ribs to the front of my body. The pain in that "curve" and in the front is no where NEAR the level of pain in my back.

Come on everyone.... explain your pain! We may, even, be able to help people that come here and have questions about the "MS-Hug"

[Andy75]

Right side only

First I have what I believe is the Hug only on my right side. My MS specialist says the Hug is bilateral, so he doesn't believe that it is the Hug. But anyways...

My pain is from below my chest down to my waist. It is a burning, crushing pain. My breathing is labored and it hurts especially when I breathe in. It also affects my ability to speak. My voice becomes softer and I can only speak in short sentences.

[Thinkimjob]

More like incredibly painful spasms under my ribs. Kind of by the time you recover from one, then the next squeeze hits. Like food poisoning, minus the vomiting. Sweating, lying on the cold bathroom floor, thinking about sticking your fingers down your throat just to stop feeling so awful.
Ain't no hug, that's for sure. More a snake's death grip,

[emily06]

I've been having that pain we get when we lower our necks and it shots down our neck - I forget the medical term. But the past couple of days I'm having that pain even when I'm not moving my neck down. And this worse pain is shooting all the way down my neck to my back and out through my legs. Anyone know what that might be. And how to get rid of it! And my head feels like something is squeezing it very tightly. (I don't know what an MS hug is)

[MSW1963]

The on-set of the 'hug' for me was approx. 1-2yrs ago. I had no idea what it was. I have a lot of anxiety with it, although mine is not the most 'painful' flavor. My flavor of hug does not extend down to my rib area, but is a very narrow area exactly even with my bra line and varies in intensity through out the day.

I've had pain and paralysis in my arms/hands since before my MS dx, but no spinal lesions on my MRIs that would account for my arm/hand sx's.

My MS doc confirmed that my clinical exam and sx's involving arm/hands indicates spinal lesions, although none appear on my MRIs.

Over the 1-2yrs since the hug started, I began to realize that the hug and my sx's involving my arms/hands lined up pretty exactly in the same horizontal area. I also became aware of the horizontal area lining up with my arms because I had a relaps in my arm/hand sx's during the time the hug started.

It was a few weeks until my next neuro appointment, and I was kind of furious that I had spent so much time in pain, problems inhailing and the anxiety that can induce. With the very old arm/hand sx's and 1-2yrs with the 'new' hug sx's, analyising until I realized that the 2 areas coincided.

During the next appointment, using visual aids <insert sarcasm here>, I very dramatically demonstrated that the arm/hand sx's and the 'hug' coincided; involved the same 'real estate' analogy. My doc's reply, 'oh, yes, they are related'. He also really liked the 'real estate' analogy. (He's also a specialist in diversion techiniques, and I'm easily distracted )

I now realize that not being able to stand for more than 10-15 minutes for many years because of severe spasms in my spine are probably related to the 'hug', and the arm/hand sx's. I'll be discussing that possibility with my MS doc at my next appointment.

I sometimes feel there is a bit of 'cloak and dagger' intrigue that some MS doc's in particular seem to employ/enjoy? when it comes to sharing=withholding what they probably know about us, our sx's, and disease course.

Sorry guy's for the rant, but I'm still pretty upset how all this transpired with my MS doc. For clarification, I do have one of the best MS doc's around and I do recognize his astute level of skill and training; the intrigue I could do without.

[mlissa67]

Mine is like a belt around my bra line and its as if its getting tighter and tighter to the point I experience difficulty breathing. It is very anxiety producing which probably makes the feeling of not being able to breathe even worse. I do have a spinal lesion located at the cervical and thoracic juncture which is believed to be causing this sensation. I take Baclofen and Valium which helps.

[fishead]

The on-set of the 'hug' for me was approx. 1-2yrs ago. I had no idea what it was. I have a lot of anxiety with it, although mine is not the most 'painful' flavor. My flavor of hug does not extend down to my rib area, but is a very narrow area exactly even with my bra line and varies in intensity through out the day.

I've had pain and paralysis in my arms/hands since before my MS dx, but no spinal lesions on my MRIs that would account for my arm/hand sx's.

My MS doc confirmed that my clinical exam and sx's involving arm/hands indicates spinal lesions, although none appear on my MRIs.

Over the 1-2yrs since the hug started, I began to realize that the hug and my sx's involving my arms/hands lined up pretty exactly in the same horizontal area. I also became aware of the horizontal area lining up with my arms because I had a relaps in my arm/hand sx's during the time the hug started.

It was a few weeks until my next neuro appointment, and I was kind of furious that I had spent so much time in pain, problems inhailing and the anxiety that can induce. With the very old arm/hand sx's and 1-2yrs with the 'new' hug sx's, analyising until I realized that the 2 areas coincided.

During the next appointment, using visual aids <insert sarcasm here>, I very dramatically demonstrated that the arm/hand sx's and the 'hug' coincided; involved the same 'real estate' analogy. My doc's reply, 'oh, yes, they are related'. He also really liked the 'real estate' analogy. (He's also a specialist in diversion techiniques, and I'm easily distracted )

I now realize that not being able to stand for more than 10-15 minutes for many years because of severe spasms in my spine are probably related to the 'hug', and the arm/hand sx's. I'll be discussing that possibility with my MS doc at my next appointment.

I sometimes feel there is a bit of 'cloak and dagger' intrigue that some MS doc's in particular seem to employ/enjoy? when it comes to sharing=withholding what they probably know about us, our sx's, and disease course.

Sorry guy's for the rant, but I'm still pretty upset how all this transpired with my MS doc. For clarification, I do have one of the best MS doc's around and I do recognize his astute level of skill and training; the intrigue I could do without.

MSW1963,

Thank you for sharing such and extensive and informative post. I am replying because of your "cloak and dagger" comment. I want to tell you that MY current neuro has done the "cloak and dagger (C&D for short haha)" with me, as well. It took me over 5 yrs to realize it, but she does do that, and it infuriates me. She acts as if I am going to fall to peices over specific information.

[MSW1963]

fishead, after re-reading my post, I found it veeery looong and a bit cringe worty, like I hi-jacked someone's thread, again. My apologies for that.

I'm relieved the C&D comment was useful. Without the opportunity to 'compare notes' with other patients on a regular basis, I'm usually left feeling the C&D is all in my head. It's reassuring to know I'm not alone. Misogny of the past seems to have been replaced with patronizing and 'C&D' behavior. Infuriating.

[fishead]

MSW1963,

No no, hun. I don't feel you "hijacked" this thread!! Your post was NOT "cringe=worthy" either. You allowed EVERYONE to find out what you, and perhaps they deal with.

The C&D seems to run rampant with almost everyones Neuros. I find this unacceptable and wish I could figure out a way to "address it" on a broader scale.

I think the biggest thing I can share (this is coming from the "nursing educator" side of me) is this: We MSers need to become our own advocates and speak out, when we feel the doctors are witholding information. We need to say "this is MY LIFE" and "MY BATTLE" and "I need to be given all my information so that I can plan my battle"!

The biggest thing to remember is this: Doctors are performing a service for us. We are their employer! Yes, they deserve a certain amount of respect, but that does not mean we should be afraid of them OR let them "slack" in their service to us. (would you use a plumber that doesn't tell you your pipes are about to burst?)

Anyone please feel free to comment on this as well! Please share!!

[MSW1963]

emily06, I think you might be describing Lhermitte's sign. I've heard/read it described as electrical shock down the spine when the neck is flexed downward or when bending the neck/chin down toward the chest.

'MS Hug' usually involves the upper torso area producing the sensation of being hugged to tightly, or sometimes a banding sensation around the upper torso and ribs.

I've had a 'banding' sensation on my legs, but I'm not sure it's considered the same as the hug.

Neither the "Hug" nor "Banding" sound like medical terminology. Some patients, possibly some doc's too, might use 'banding' interchangibly with 'hug'.

My doc sticks with the hug to describe the tightness around my upper torso and ribs, and banding to describe the tight sensation involving extremities.

[fishead]

MSW1963,

YES, L'hermitte's (not sure if my spelling is correct) is what it is called. Thank you for posting that.

[MSW1963]

I'm not sure how much medical/scientific research is actually associated with the "MS Hug". Most of the info I've searched is sort of a 'mash up' of info about the spinal cord, anatomy, lesions, and anecdotal reports of the hug sx.

That might explain some of the confusion patients experience when reporting it to their doc's.

I posted a site with a detailed diagram of the spinal cord in a recent 'hug' thread. I also found this explanation at another site:

There are tiny muscles between each rib, called intercostal muscles which basically hold the ribs together, but also give the ribcage some flexibility; it’s when these muscles go into spasm that we get the MS hug, a friendly description of an extremely uncomfortable and often painful symptom.

[ghostgirl]

So here's my MS hug:

Day to day I have low amounts of pain in my upper back, bottom of rib cage to the very top where the back meets the neck. Some day's are worse than others and on those days it does wrap around my ribs to the front. This is not comfortable but tolerable.

When I get a "hug" (HORRIBLE term btw) I can hardly breath. I am thankful I had two kids because I use lamaze breathing. They generally last 2-4 hrs. before releasing. Change in position does not help. Really, nothing seems to. It is hard to do much to even try to alleviate it as I can hardly walk (all hunched over) and I really have to remember and force myself to breath. When I do take a breath it is like my torso has been encased in some kind of torture corset made of metal. I usually end up waiting it out curled up sitting in my recliner.

I have only woken up with the "hug". I really feel it is because of how I was posed. When I manage to keep the pillow I hug at night where it belongs I haven't had any trouble.


As for neuro's:
I go to a teaching hospital which is mostly good but you do get sick of the knowing glances between med student and doctor. lol

[CaroleL]

This post is very enlightening for me!

Before my lower back episode that removed my ability to walk, I spent about 2months with upper back pain.

I see now that it was probably ms hug. My spin was slightly above bra line and was a squeezing burning sensation that wouldn't go away. It circle the front of my body too, making deal breathing difficult, it would literally take my breath away.

I could find no position to release the pressure. This pain eventually went away and within two weeks I suffered my lower back episode.

[MSW1963]

ghostgirl, I remember those annoying neuro students and their desperate attempts to score points with the boss. If not for my then amazing MS neuro, I would have left my University Hospital long before I did.

fishead, re: just TONIGHT, realize I actually have pain in my back.

I glossed over the part of your post about back pain associated with your Hug. I've had back painf with muscle spasms for so long that have been ignored, I've resigned myself to accepting it. My back muscles 'seize' up and I can't stand very long at all.

I've had this for such a long time, covered with my neuro so often that I just gave up ever expecting it to be treated or taken 'seriousely'. The impact on my general health and mobility over the years has taken a huge tole.