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MS Hug/Girdle-Band Sensation

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Posted 6/27/2007 5:09 AM (GMT 0)
Has anyone experienced what's called an MS Hug or Girdle-Band Sensation before?  I've gone undiagnosed for 3 years now and probably don't have MS, but I started to have these strange sensations back in February in my chest/abdominal area where it feels tight, a little pressure, warm tingling, and difficult to breath (it's really hard to explain).  My neurologist will refer me to the Mayo Clinic in a couple months if she can't figure it out (she's an ALS specialist too).

Like I said, I probably don't have MS, but when I read about this sensation, it was the closest thing to what I've been feeling.  I was wondering if anyone has experienced this and what did it feel like?  Did it feel like pressure, was it painful, did it affect your breathing?  I thought walking with a cane and then my swallowing difficulties were going to be the worste of this, but when this came on, it's scaring me. My pulmonary test last week just killed me, and my abdomen and chest burned afterwards as well as my arms tingled for over an hour.  Anyway, any insight into this specific symptom with MS would be appreciated.  Thanks.

Posted 6/27/2007 1:39 PM (GMT 0)
My very first symptom of MS was the feeling of tightness in my left rib cage.  Now I have it all the way down to my upper thigh.  But it is just on my left side, and it does feel like a girdle.  I'm keep hoping it will go away, but I have a lesion on my spinal cord in the thoratic region.  The tightness does not cause me to have shortness of breath.  It tends to be more uncomfortable/painful when I am standing or sitting in a hard chair.  For some reason, the feeling of tightness tends to almost disappear when I am laying down for awhile.  Hope you get an answer to your problems.
Posted 6/27/2007 2:40 PM (GMT 0)
I have this symptom alot and went to the er a few times because it would get to where I felt as if I couldn't breath. I have the tightness completly around my chest, I feel lightheaded and like I could pass out, I have tingling around my mouth and could have sworn I was having a heartattack. The doctors would check my heart and it was fine so they would tell me I was having anxiety attacks. I felt so stupid, so when I was finally diagnosed with MS in June of 06, it was almost a relief because now I knew what was going on and it wasn't all in my head. I am on Copaxone and Baclophen and I am doing so much better, but I still have the girdle feeling every once in a while, but at least now I know what is causing it so I just try to relax till it eases up. I had this symptom for years but never thought it was MS till I had a bad episode at work and they thought I stroked out. I couldn't talk or use my left arm, or even walk. Went to a neurologist and my MRI showed 20 lesions but my spinal tap and evoked visual test were negative so my neuro said I was in the 15% of people who have MS without it showing up in those two tests. Hang in there and hope you can get some answers soon.
Posted 6/27/2007 4:40 PM (GMT 0)

Hello

I too have a new spinal lesion and with this heat some of my old ones flare up adn down-- I know the girdle feeling-- ouch-- i have not been able to waer certain articles of underclothing because the pain around the ribs and back is bad!  I will say it comes and goes and is more intense if i stand for a long time in one spot or sit in the same position --laying down not bad-- My legs have weakness and i am dizzy but if I push myself to do a walk once the temp is cooler in the evening -- it seems to ease it up a bit so at least i can get through another day of work--

prayer and hugs to all

Zoe Butterfly3

Posted 6/28/2007 12:25 AM (GMT 0)
thanks for your replies. 3 years is a long time without a diganosis, so I'm just trying to reach out and figure stuff out. The sensation I feel isn't necessarily painful. Sometimes it kind of tingles, but it's more pressure from the middle of my chest and sometimes goes as low as right above my bladder. When it gets intense, it feels like I'm really laboring to get a breath in. I went to the ER because I didn't feel like I could get air in. They did the normal heart, chest x-ray tests, but nothing showed up as being wrong. The doc came and talked to be about "shortness of breath" mental stuff. I tried to tell him that I didn't necessarily feel shortness of breath, and I wasn't hyperventilating; quite the opposite, had to conentrate on my breathing or felt like I'd forget to breath. I had a brain MRI Nov of last year; nothing showed up. MRIs of neck, spine, and lower back didn't show anything either. My swallowing gets worse in waves sometimes, but my EMG and barium swallow are the only tests that have shown up abnormal. I did have 3 postives and 3 IND on a Western Blot Lyme test, so I'm persuing that since this all started suddenly 3 years ago, but I can't be sure of anything. Thanks again.
Posted 6/28/2007 1:56 PM (GMT 0)
Nashoba, How are you doing on the baclophen?  Are you able to function okay?  I'm on neurotin and it is helping with the burning that I experience, but the tightness in my ribs and back remains.
Posted 6/30/2007 12:58 PM (GMT 0)
When I was diagnosed in the hospital in 2001, I complained of this symptom.  I described it as though I was the Michelin Bib Man.  Since then, the sensation has gone away but there is definately numbness in my abdomen/diaphram area.  Good luck- Jim 

Posted 6/30/2007 2:44 PM (GMT 0)
Has anyone found a medication to successfully deal with this problem that does not make them feel like a zombie?  My ribs and back have been really bothering me the past few days.

Posted 7/2/2007 1:33 PM (GMT 0)
I am on Klonopin for anxiety and just happens to turn out that it helps with my neuro pain from the MS hug -- i only take a small dose 1.5 mg daily max and it doesn't make me too tired so that may help if you ask your doc about it

Posted 7/3/2007 2:10 AM (GMT 0)
Another specific question on this. When it happens to you, do your arms start tingling too as well as you feel like a pressure in your chest? I just experienced this again today the worst that I've ever felt it. I was in the car w/ my dad, and started to feel the sensation of pressure in my chest and abdomen. Arms and even legs started to tingle. By the time it all subsided an hour later, I feel as if my chest cavity is paralized underneath and hard to keep my upper body straight. Does this make sense? Well, none of this makes sense to me. Almost had my parents take me to the ER again. Thanks.
Posted 7/4/2007 11:42 PM (GMT 0)
I am in limbo, but expereinced the "hug like" sensation around my waist about 9 years ago and it lasted about a month I occasionally feel the same thing around my neck.

Posted 7/11/2007 2:14 AM (GMT 0)
This sensation is happening now about 2 to 3 times per day. When it first started in February, it would happen only about 1 time per day, then after it would subside, my breathing seemed to be better. Now when it happens, it is SO intense. Tonight, it moved from my upper chest and ribs down to my abdomen. Every time it happens, it seems to leave permanent damage. I tried to tell my neurologist about this, but she didn't know what it could be. I didn't know at the time that there was something called the MS hug, so I wrote her a letter explaining the sensation again and hoping she'll do another brain MRI. I have another EMG scheduled in a week, so I hope she will. It feels like the mucles in my chest area are almost paralzyed now and very difficult for me to breath. Also, throat and back of tongue feel like going numb many times. Thanks again for sharing your experiences.
Posted 1/31/2009 10:54 PM (GMT 0)
I'm experiencing the exact same thing. I only get it some mornings and have had it about 10 times in three months.
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