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Old 04-08-2008, 11:24 AM #1
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Default Small whine . . .Just have to ask this

I'm having an exacerbation right now. It's been going on for 1 1/2 weeks. It is a somewhat painful one as I do have the hug something terrible.

Although I have been through the hug many times before, I don't remember it being quite like this. I can deal with some of the physical carp - numbness, spasticity, etc. But this hug has me feeling so, so . . . sick.

Do any of you experience that real sick feeling while in an exacerbation? I do have an appointment with the uro today which is a good thing as my bladder is going nuts. When I was at the neuro's last week they wanted me to get my bladder checked for an infection. Fortunately, I already had this appointment scheduled.

So, do you ever get that feeling? Also, when coming out of the flare do you get that fluctuation of feeling ok and then feeling really sick and then feeling ok . . .?
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Old 04-08-2008, 11:50 AM #2
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I'd hug you but sounds like you've had enough Hope you feel better soon!!!
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Old 04-08-2008, 12:48 PM #3
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Yep, I do tkirk.

I just wanted to give you a bit of info on the hug, first:

"What Causes the "MS Hug?"
It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

What Does It Feel Like?
Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

- As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
- Focused in one small area (usually on one side or in the back) or go all the way around the torso
- Worse when fatigued or stressed
- Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
- Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure
- How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack."

http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

As far as feeling sick, this can be as a result of the pain (nausea, exhaustion from it, etc.) or directly because of the spinal lesion itself. The way I understand it, if our lesion is in T-6, it will often affect our stomach in particular (and can cause the symptoms of anything listed below that level too), as per the following:

"RE: Potential damage; based on lesion location

SPINAL COLUMN

C1: blood supply to the head, pituitary gland, scalp, bones of the face, inner and middle ear, sympathetic nervous system, eyes, ears
C2: eyes, optic nerves, auditory nerves, sinuses, mastoid bones, tongue, forehead, heart
C3: cheeks, outer ear, face, bones, teeth, trifacial nerve, lungs
C4: nose, lips, mouth, Eustachian tube, mucus membranes, lungs
C5: vocal cords, neck glands, pharynx
C6: neck muscles, shoulders, tonsils
C7: thyroid gland, bursa in the shoulders, elbows, ulnar nerve

T1: arms from the elbows down, including hands, arms, wrists and fingers; esophagus and trachea, heart
T2: heart, including its valves and covering coronary arteries; lungs bronchial tubes
T3: lungs, bronchial tubes, pleura, chest, breast, heart
T4: gallbladder, common duct, heart, lungs, bronchial tubes
T5: liver, solar plexus, circulation (general), heart, esophagus,
stomach
T6: stomach, esophagus, peritoneum, liver, duodenum
T7: kidneys, appendix, testes, ovaries, uterus, adrenal cortex, spleen, pancreas, large intestine
T8: spleen, stomach, liver, pancreas, gallbladder, adrenal cortex, small intestine, pyloric valve
T9: adrenal cortex, pancreas, spleen, gallbladder, ovaries, uterus, small intestine
T10: kidneys, appendix, testes, ovaries, uterus, adrenal cortex, spleen, pancreas, large intestine
T11: kidneys, ureters, large intestine, urinary bladder, adrenal
medulla, adrenal cortex, uterus, ovaries, ileocecal valve
T12: small intestine, lymph circulation, large intestine, urinary bladder, uterus, kdneys, ileocecal valve

L1: large intesine, inguinal rings, uterus
L2: appendix, abdomen, upper leg, urinary bladder
L3: sex organs, uterus, bladder, knee, prostate, large intestine L4: prostate gland, muscles of the lower back, sciatic nerve
L5: lower legs, ankles, feet, prostate

Sacrum: hip bones, buttocks, rectum, sex organs, genitalia, urinary bladder, ureter, prostate

Sacral Plexus: Forms the sciatic as well as other nerves that go to muscles, joints and other structures of the legs, knees, ankles, feet and toes

Coccyx: rectum, ****"

(Sorry, don't know who to credit for this info ...).

Cherie
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Old 04-08-2008, 02:02 PM #4
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Cherie & GJ - Thanks

I am sure a lot of it has to do with the amount of pain mixed in with fatigue. Since I am now improving it is waxing and waning and was curious if others had that same waxing and waning.

BTW - I did not get any good drugs at the neuros. LOL. Just increasing the Neurontin. Once that kicks in I do somewhat better and am just left with muscular pain which I am treating with Advil, Epsom salt baths, and ice. It helps.
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Old 04-08-2008, 06:23 PM #5
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Tk the hug, well first, this one is for you

the hug I get just makes me labor at breathing, hard to describe like someone is resting on my chest,, but not like when you have a viral infection where the tightnes is inside the lung, this is like wrapped around me squeezing me, as for getting sick not sure am on so many pills been taking perscribiton pepcid, with my meds this week, sorry I cant be better help on that

Hope you get to feeling better real soon maybe our late night cruise wasnt a good idea
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Old 04-08-2008, 06:46 PM #6
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As I mentioned on insights I also have the same problem on my left side -- from my bra line down to the waist. You could draw a line down the middle of me (front and back). This was my first symptom last winter and it has never gone away. I am also experiencing some bladder problems -- sense of bladder urgency. This also comes and goes and I have not had a bladder infection. I am not sure if I am having a flare or not -- no new symptoms but all of my new ones are bothering me more than they were prior to my infusion last Wednesday.
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Old 04-08-2008, 07:02 PM #7
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BTW, bladder and bowel troubles, as well as numbness from the torso to the feet, are common in this type of attack. It doesn't necessarily indicate infection, but you always want to check that first.

***Please do not leave the potential for infection untreated though; with fever reducers and any other meds needed to treat it. Spinal lesions do not like increased body temp, in my experience.***

How did it go at the doc's today?

The hug might last for most of 4 - 6 weeks, then start to subside over the next 4 - 6 weeks. It really depends on how severe the attack pans out to be, i.e. which parts below the torso are ultimately affected. It has never happened to me that I (only) get it in the torso, it usually spreads up or down (or both) from where-ever it starts. Hopefully that won't be the case for you though . . .

These attacks just don't resolve as quickly as "normal" attacks . . . (just so that you don't get scared if things continue to escalate over the next few weeks). The good news is that the hug is probably as bad as it is going to get.

Cherie
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Old 04-08-2008, 07:09 PM #8
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this is how this last flare started too barb but wasnt sure how to view things because I have had this all happen before so its not new except, its all on the wrong side of my body this time not left side but rather right side.

Barb you described the way it started for me to a tee almost, drawing a line from front to back(minus the bra part) along with my new friend chucky the headache, and thats when i thought well its on the wrong side call neuro

try to rest easy TK
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Old 04-08-2008, 07:14 PM #9
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Quote:
Originally Posted by lady_express_44 View Post
Yep, I do tkirk.

I just wanted to give you a bit of info on the hug, first:

"What Causes the "MS Hug?"
It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

What Does It Feel Like?
Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

- As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
- Focused in one small area (usually on one side or in the back) or go all the way around the torso
- Worse when fatigued or stressed
- Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
- Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure
- How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack."

http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

As far as feeling sick, this can be as a result of the pain (nausea, exhaustion from it, etc.) or directly because of the spinal lesion itself. The way I understand it, if our lesion is in T-6, it will often affect our stomach in particular (and can cause the symptoms of anything listed below that level too), as per the following:

"RE: Potential damage; based on lesion location

SPINAL COLUMN

C1: blood supply to the head, pituitary gland, scalp, bones of the face, inner and middle ear, sympathetic nervous system, eyes, ears
C2: eyes, optic nerves, auditory nerves, sinuses, mastoid bones, tongue, forehead, heart
C3: cheeks, outer ear, face, bones, teeth, trifacial nerve, lungs
C4: nose, lips, mouth, Eustachian tube, mucus membranes, lungs
C5: vocal cords, neck glands, pharynx
C6: neck muscles, shoulders, tonsils
C7: thyroid gland, bursa in the shoulders, elbows, ulnar nerve

T1: arms from the elbows down, including hands, arms, wrists and fingers; esophagus and trachea, heart
T2: heart, including its valves and covering coronary arteries; lungs bronchial tubes
T3: lungs, bronchial tubes, pleura, chest, breast, heart
T4: gallbladder, common duct, heart, lungs, bronchial tubes
T5: liver, solar plexus, circulation (general), heart, esophagus,
stomach
T6: stomach, esophagus, peritoneum, liver, duodenum
T7: kidneys, appendix, testes, ovaries, uterus, adrenal cortex, spleen, pancreas, large intestine
T8: spleen, stomach, liver, pancreas, gallbladder, adrenal cortex, small intestine, pyloric valve
T9: adrenal cortex, pancreas, spleen, gallbladder, ovaries, uterus, small intestine
T10: kidneys, appendix, testes, ovaries, uterus, adrenal cortex, spleen, pancreas, large intestine
T11: kidneys, ureters, large intestine, urinary bladder, adrenal
medulla, adrenal cortex, uterus, ovaries, ileocecal valve
T12: small intestine, lymph circulation, large intestine, urinary bladder, uterus, kdneys, ileocecal valve

L1: large intesine, inguinal rings, uterus
L2: appendix, abdomen, upper leg, urinary bladder
L3: sex organs, uterus, bladder, knee, prostate, large intestine L4: prostate gland, muscles of the lower back, sciatic nerve
L5: lower legs, ankles, feet, prostate

Sacrum: hip bones, buttocks, rectum, sex organs, genitalia, urinary bladder, ureter, prostate

Sacral Plexus: Forms the sciatic as well as other nerves that go to muscles, joints and other structures of the legs, knees, ankles, feet and toes

Coccyx: rectum, ****"

(Sorry, don't know who to credit for this info ...).

Cherie

I just wanted to thank you for explaining this.

I have numerous lesions on the brain (at least 13) and I have had an mri of the spine but it didn't show any lesions...is it still possible to feel the "hug"?

Years ago (I'd say about 10 or 15 years) I was having terrible pain in my rib cage area. The drs couldn't understand what was going on except that I had inflamation in the areas between the ribs. After endless tests that came back negative they decided for pains sake the best thing was cortizone (sp?) shots. OMG those were worse than any pain I was having! I had 6 shots at one time in my left rib cage. I wonder if maybe that was one of those times when my MS symptoms started to appear?
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Old 04-08-2008, 07:17 PM #10
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Quote:
Originally Posted by tkrik View Post
I'm having an exacerbation right now. It's been going on for 1 1/2 weeks. It is a somewhat painful one as I do have the hug something terrible.

Although I have been through the hug many times before, I don't remember it being quite like this. I can deal with some of the physical carp - numbness, spasticity, etc. But this hug has me feeling so, so . . . sick.

Do any of you experience that real sick feeling while in an exacerbation? I do have an appointment with the uro today which is a good thing as my bladder is going nuts. When I was at the neuro's last week they wanted me to get my bladder checked for an infection. Fortunately, I already had this appointment scheduled.

So, do you ever get that feeling? Also, when coming out of the flare do you get that fluctuation of feeling ok and then feeling really sick and then feeling ok . . .?
i hope you are feeling better. unfortunately i never really understood if i was having a flare or just a bad day or what. i have days where i can feel wonderful one minute then absolutely awful the next. i can't remember a day where i woke up feeling great and made it the entire day feeling great. like i told my neuro...i don't know what normal is anymore.
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