Your description of the "MS Hug"

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Your description of the "MS Hug"

Postby Oceanfloats » Sun Jul 28, 2013 12:06 pm

I would like understand how any of you experience the "MS Hug" (or Death Grip, if this is what I have been experiencing) and what you do to deal with it.

If this is what I have been experiencing, it always starts with tingling and a spasm-y feeling on the left side of my back, about 10 inches beneath the shoulder blade. This spot of tingliness feels like it is about the size of a compact disk, and I get it rather frequently even if it does not progress into what am experiencing now, which is a super-tight feeling all the way around the left side to the front of me, and a pain that come from that same spot in my back through to the front of me, as if someone is kind of stabbing me from the back there and it is going through to my mid-rib cage.

I once went to the Er with these exact same symptom and the ekg and blood tests came back normal. They told me "Probably indigestion. Here, have some Vicodin..." because about all our ER knows how to do is prescribe Vicodin. I hate narcotics, so do not know if it would help with this.
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Re: Your description of the "MS Hug"

Postby Ladymac » Sun Jul 28, 2013 1:43 pm

Greetings Oceanfloats,

What you are describing to me on one hand sounds similar to the MS Hug when I had it, but that is what you are getting right now, the super tight feeling all the way around. It was like someone was squeezing me really hard and I had trouble breathing.

The other feeling though, beneath the shoulder blade I was suffering with that big time, especially at night. First it was one side and over the months, both sides. I couldn't lay on either side or on my back! My MS Neurologist had me go get an MRI of my Cervical Spine, and sure enough I had at my C5/C6 a bulge and compression of the spinal cord and had to have Spinal Fusion Surgery. I woke up from the day surgery with a plate, screws, with the fusion inside, but NO MORE PAIN in the shoulder blades. My Neuro knew that C5/C6 would make that pain and I had damage on the left and right side so it happened on both shoulder blades. Total Instant relief of those symptoms, just a harder than I thought recooperation from the surgery because our heads are very heavy so I wasn't quite prepared for my recovery taking several weeks. Now, I am glad I had it done! I am not saying that is what is wrong with you, but that Horrible stabbing going right through you, is how I would describe my pain and what we found for me.

The way we got the MS HUG tight feeling you are having right now under control is I called my Neuro and asked him to put me on IV Solumedrol for 3 - 5 days in the hospital and to manage the pain for me through the IV until this backed off. I ended up only needing the 3 days @ 1000mg per day IV Solumedrol each over 3 hours and then of course we had to keep my sugar in check because it sends that through the roof until I am off the Solumedrol 24 - 48 hours.

I don't take oral pain medication at home. I know what you mean about taking narcotics. In the hospital I have the protocol. I have found the ER a total waste of time unless I talk to my Neuro or one of his associates who is on call for him and they call the hospital and tell them I am coming, to make me comfortable, start solumedrol, pain meds in IV only, admit me, and make sure of course the pain isn't a heart attack, etc., but still, my Neuro team doesn't leave the ER doc to their own devices. Vicodin would give you heartburn........if you were someone who gets heartburn like me! Oh brother!

Good Luck and Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: Your description of the "MS Hug"

Postby jimmylegs » Sun Jul 28, 2013 5:35 pm

my ms hug was certainly a muscle spasm, same thing as was causing my shortness of breath, dysphagia, etc etc.

you might want to look at magnesium status.. ms patients typically tests low normal for serum mag, while healthy controls test high normal or in some cases even higher than the top end of the generally established normal range.

if you get tested, make sure your levels are much closer to the top end of the normal range. be aware, ranges provided in individual labs are sometimes derived from client values not established reference values. in the case of magnesium that means the local lab's range will probably be on the low side. be sure you compare your bloodwork to researched reference ranges and get close to the top end of that.

the units will vary depending where you live. my local lab uses mmol/L and the normal range is 0.70-1.10. I would want to see at least 0.95 to have confidence that any issues are not simple magnesium deficiency.

magnesium deficiency is known to occur inside the 'normal' range; that has been established in the scientific literature.

if you can get a test, great! if you can't, I can give you some pointers on how to correct low levels. it's not the easiest nutrient to supplement, but there's tons of info we can provide here if you want to pursue this angle.
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Re: Your description of the "MS Hug"

Postby lyndacarol » Sun Jul 28, 2013 8:34 pm

Oceanfloats wrote:... it always starts with tingling and a spasm-y feeling on the left side of my back, about 10 inches beneath the shoulder blade. This spot of tingliness feels like it is about the size of a compact disk, and I get it rather frequently even if it does not progress into what am experiencing now, which is a super-tight feeling all the way around the left side to the front of me, and a pain that come from that same spot in my back through to the front of me, as if someone is kind of stabbing me from the back there and it is going through to my mid-rib cage.

The location of the pain you describe in your back through to the front is the general location of the pancreas. Has your doctor mentioned "pancreatitis" or checked your pancreas with an insulin test? Or has he looked for an insulinoma – with a CT scan?
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Your description of the "MS Hug"

Postby HappyPoet » Mon Jul 29, 2013 1:01 pm

Wow, Oceanfloats, you received terrific replies! :)
In your quote below, I highlighted in bold your questions:

Oceanfloats wrote:I would like understand how any of you experience the "MS Hug" (or Death Grip, if this is what I have been experiencing) and what you do to deal with it.

If this is what I have been experiencing, it always starts with tingling and a spasm-y feeling on the left side of my back, about 10 inches beneath the shoulder blade. This spot of tingliness feels like it is about the size of a compact disk, and I get it rather frequently even if it does not progress into what am experiencing now, which is a super-tight feeling all the way around the left side to the front of me, and a pain that come from that same spot in my back through to the front of me, as if someone is kind of stabbing me from the back there and it is going through to my mid-rib cage.

I once went to the Er with these exact same symptom and the ekg and blood tests came back normal. They told me "Probably indigestion. Here, have some Vicodin..." because about all our ER knows how to do is prescribe Vicodin. I hate narcotics, so do not know if it would help with this.

1. 'how any of you experience the "MS Hug"' My MS Hug started six years ago as random numb patches on my back. Now, at the worst times, I must stay horizontal (couch or bed) because my intercostal and torso muscles become too painful to fight gravity to remain upright in a sitting/standing position. Specifically, I feel like I'm being:

* Squeezed around entire ribcage & under/over shoulder blades by boa constrictor.
* Stabbed into lower, left ribcage by knife.
* Stabbed upward through right breast by broken ribs (pseudo).
* Crushed on entire front ribcage by elephant.
* Gnawed on left side ribcage by sharks.

2. "what you do to deal with it."

* Baths.
* Massage.
* Stretching.
* Moist heating pads.
* Lyrica, baclofen, methadone, and hydrocodone.
* Trigger Point injections- steroids injected into knotted, painful muscles.
* Intercostal nerve block- steroids injected around intercostal nerves (located under each rib).

3. "I hate narcotics ..." Two of the meds listed above are narcotics--methadone and hydrocodone--that greatly help reduce some of the pain (but also need both types of quarterly steroid injections).

Hope this helps. You can also search the forum for "MS Hug" to find more information.
Best wishes.
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Re: Your description of the "MS Hug"

Postby Oceanfloats » Tue Jul 30, 2013 9:33 am

:smile: Thanks, everybody! I really appreciate the input and the information.

Ladymac wrote: It was like someone was squeezing me really hard and I had trouble breathing.

jimmylegs wrote:my ms hug was certainly a muscle spasm, same thing as was causing my shortness of breath, dysphagia, etc etc.

Happy Poet wrote:Specifically, I feel like I'm being:

* Squeezed around entire ribcage & under/over shoulder blades by boa constrictor.
* Stabbed into lower, left ribcage by knife.
* Stabbed upward through right breast by broken ribs (pseudo).
* Crushed on entire front ribcage by elephant.
* Gnawed on left side ribcage by sharks.


Clearly, there should another name for the MS Hug, because hugs are nice and welcoming, nothing like any of these experiences!

LyndaCarol wrote:The location of the pain you describe in your back through to the front is the general location of the pancreas. Has your doctor mentioned "pancreatitis" or checked your pancreas with an insulin test? Or has he looked for an insulinoma – with a CT scan?


I've not thought of that. I see my doc again in about a week, and I'll ask him about it. I'll also ask about a slipped disk, as Ladymac mentioned. Thank you!

As for narcotics-
I wonder if a muscle relaxant such as Zanaflex would help? When I have taken these in the past, they did not give me that weird head feeling I get from any of the -cones.

I need to get back into a daily stretching-yoga routine. It can't hurt and maybe will help.
Last edited by Oceanfloats on Tue Jul 30, 2013 9:50 am, edited 1 time in total.
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Re: Your description of the "MS Hug"

Postby jimmylegs » Tue Jul 30, 2013 9:43 am

one of magnesium's hundreds of functions as an essential nutrient is muscle relaxation. I am not sure zanaflex stacks up.. but then, I know very little about meds in general!
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Re: Your description of the "MS Hug"

Postby Oceanfloats » Tue Jul 30, 2013 9:51 am

Jimmylegs- I will definitely pick up a bottle of the Slo-Mag today when I am in town. Haven't been taking it for some time. Thank you once again!
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Re: Your description of the "MS Hug"

Postby jimmylegs » Tue Jul 30, 2013 10:30 am

fyi, slo mag is 2:1 calcium to magnesium. calcium is a muscle contractor, the opposite of what you want...

maybe see if you can find a straight magnesium supplement. in particular a soluble, organic, bioavailable and absorbable form of magnesium such as magnesium glycinate. eg http://kirkmanlabs.com/ProductKirkman/1 ... llergenic/

magnesium citrate products can be useful too, although a little less absorbable and therefore with a tendency to laxative effects if taken to excess.

healthy food sources of magnesium - try to achieve 400mg per day, as much of it from food as possible:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
(fyi I have been given to understand 'there's an app for that' lol)

another option (this is one I have yet to try but am planning to) - magnesium chloride flakes
http://www.swansonvitamins.com/swanson- ... -oz-flakes

you could also try Epsom salts in the bath (magnesium sulfate)

hope that helps!
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Re: Your description of the "MS Hug"

Postby HappyPoet » Tue Jul 30, 2013 11:55 am

Hi Ladymac,

Congrats on your successful cervical spine surgery. :) Words can't express how happy I am for you!!

I want to let you know that I copied part of your post above to Dr. Flanagan's (uprightdoc's) thread, "CCSVI and CCVBP" on the CCSVI subforum: chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14005-3450.html#p213352
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Re: Your description of the "MS Hug"

Postby Ladymac » Tue Jul 30, 2013 1:08 pm

Everyone is right, Let's rename it: I go for "MS SQUEEZE"
Blessings,

Ladymac
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Tecfidera Started April 2013
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Re: Your description of the "MS Hug"

Postby lovebug » Sat Aug 03, 2013 9:16 pm

My MS Hug has been going on for about 4 years. It stretches all the way around the top of my ribs in a circle to my back. It is like wearing a belt and constantly tightining it. It just does not go away! I am at an end as to what to do about the pain. I have honestly tried so many things but nothing helps. I doubt anything ever will.........
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Re: Your description of the "MS Hug"

Postby HappyPoet » Sun Aug 04, 2013 9:57 am

lovebug wrote:My MS Hug has been going on for about 4 years. It stretches all the way around the top of my ribs in a circle to my back. It is like wearing a belt and constantly tightining it. It just does not go away! I am at an end as to what to do about the pain. I have honestly tried so many things but nothing helps. I doubt anything ever will.........

Hi lovebug,

So glad you're still with TiMS but am very sad that your symptoms are still with you. Have you tried Intercostal steroid injections or epidural steroid injections???

I get Intercostal steroid injections and trigger point steroid injections quarterly, and they really, really, really help but only for the first two months--getting through the third month is hard to manage; however your mileage may vary.

I'm also giving TENS acupressure a try now and will soon start chiropractic with a flexion-distraction table to help with spondylosis in my cervical and thoracic spine.

Have you consulted with a neurosurgeon regarding the condition of your vertebrae? What do your MRI reports say?
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Re: Your description of the "MS Hug"

Postby jimmylegs » Mon Aug 05, 2013 5:35 pm

lovebug what's your current diet and supplement/meds regimen like? maybe we could spot something tweakable. also, have you had any levels tested lately?
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