What is a ms hug?

[nette573]

I have been reading trying to find out what it is.  Can anyone tell me?  Lynette

[ELT]

While I learned how to use the computer, I visited many many ms sites.  I have lists of the sites I visited.  But, you know?  I found all that stuff here too.  Read all the posts, and now you can read all the things they put in the health pages, thanks to so many.  

I know I went to my doctors with my complaints, long before I knew they had names.  

I am lucky, my neuro keeps smiling at me and not getting frustrated with me, phew. lol  I gave him a years break from me tho. LOL

I figure if there is nothing for them to see, there's nothing for them to see, so, pushing them won't help.  But, I feel that things should be visible somewhere now.  So, I asked and I got.  We'll see if anything shows up.

Erica

[nette573]

Im so mad  - - my internet just quit while I was typing up a comment for you.  I cant remember what I said.  I had alot too.  My internet down for about an hour.  Sorry, my brain not working well today anyway.  

Where did you find the nerve pain information?  Iam having so much problems with my eyes today.  And thinking of words.  Its crazy!

I do not like going to drs. either.  My doctors here at a small rural town told me when I asked if I could have ms when my problems first began they said NO YOU DO NOT HAVE MS YOU WOULD NOT BE ABLE TO WALK AND HAVE TROUBLE URINATING ON YOURSELF. The hollered at me. They also told me it was not an auto immune diease.  I have never mentioned it again.

Lynette

[ELT]

I asked for copies of my file, they said it would cost far too much to duplicate everything.  They didn't say ms hug, they said possible nerve pain and treated it.

Same as the pain in my face.  They didn't call it bilateral trigeminal neuralgia, just treated it.

Same as the pain in my thighs/hips/knees/groin/glutes.  They didn't call it meralgia paresthetica.  Just more nerve pain, and treated it.

I came up with all the names for my nerve pain on line.  The latest, the meralgia paresthetica, I found in here.  That's been a relatively new pain.  It started late last summer.  I put off going to my gp, due to not liking going to drs, LOL.  Then I got worried I was injuring myself somehow in exercise classes, cause I really felt it then.  He only said no, it wasn't an injury and to keep up the exercise.

Apparently my doctors don't like to put labels on things.  I like to though.  Helps me feel a little less psychotic.  LOL

Erica

[nette573]

Mine use to come and go - it was almost over with when it started.  I just get it ever great once in a while.  I am on neurotin.  Yes, it is just right under the ribcage on my right side.

I have often wondered what it was.  I could only tell the pa I use to go to that it feels like something there. and she would just look at me.  I think she sent me for some tests I cant remember.

I tried to get a copy of my chart and they said it cost alot of money to get but...if I could get a doctor to ask for it they dont charge.  I think maybe we all need our charts to track down our symptoms.
Lynette

[ELT]

I just was speaking to the person who told me about it.  Buscopan.  

I was on gabapentin(neurontin) and I have lyrica in the cupboard, but, it's not CONSTANTly unbearable, so, I won't take it 'til I have to, for a variety of reasons.  LOL

I can handle pain better now, than when I was younger.  Thank god.  LOL

Mine was a short lived thing at first.  But it's come and gone over the last cpl yrs, and now things seem to be hanging around more than before.  Nothing ever really goes away anymore.

Thnx for the info.

Erica

[doublevision1]

For me this symptom lasted only a of couple of weeks; I documented it in my journal and can pinpoint the day it started and the day it stopped.  It did start out mild and got progressively worse (ie: more constricting) until I was treated.  It was the steroid IV that relieved it.  At the time I didn't describe it as pain, just as a very snug, tight grip-like feeling, encircling my whole trunk.  I can imagine that living with this on a daily basis is very difficult, and suppose this may be in my future at some point, given my history.

Erica - was it baclofen that you were thinking of?  Have you tried Lyrica or Neurontin for relief?

db1

[ELT]

Kind of like there's something there.  And yes, sometimes it can bowl me over.  Usually, it's like a radiating pain, shrinking in feeling, squeezing, tightening.  Yet, pressing on it kind of relieves it, a bit.  Mine started on my right side, but has spread.  It used to be fairly transient, but, in the last half year or so (don't quote me on that, NOOOOO memory, LOL) it has become constant.  Constant sensation, anyways.  Not constantly unmanageable.  

I had a moment last night, where I had to grip the computer table, stand here, and not breath for a moment.  I started breathing really slowly, and not too deeply, to not move my ribs, and it lessened.

Keeping yourself free of gas, not stretching out your stomach with too much food, air, drink, can help to a degree.  And pressure.  It alters the sensation a bit.  I tried some anti spasm thing, on advice of a friend, it didn't help.  Can't remember what it was called, but, it started with a b, and I think it had a c, l, and n in it.  LOL

Regular exercise, without over stretching the area is good, too.  I can't do the ab work the others do in exercise class, it hurts too bad.  Then the pain is like a knife.  

Today it is bad, I did a hard exercise class on wednesday, came home and shovelled, now, today, I have been sitting in front of this darned computer, downloading/installing, basically trying to get rid of a trojan horse virus, thanks to some stupid email, no doubt.  

In a moment, when I finish one last scan, I will go for a walk in the now falling snow, and maybe that will help for a bit.  

Good luck, with it

ERica

[nette573]

I think I have had this for years and years.  Is it like you have something there when its not bothering you?  I have had a pain that felt like it would knock me to my knees and cant catch my breath and then it was gone.  Is this what it feels like?  It is on my right side.
LYnette

[ELT]

Hi, I get this sensation lots, in fact, I now have some constant sensory stuff around my lower rib cage.  Not always painful, thankfully, just there, wrong.

At it's worst, it feels like my ribs are being vaccuum sucked into my mid section.  Like when you put clothing, blankets and stuff into one of those plastic bags, and then suck the air out of it.  It also burns, and feels like the muscles are being ripped off my ribs.  

In the beginning, it was just slight discomfort, I couldn't get into a comfortable position.  And it was only on one side.  It now tends to circle my whole lower rib cage, front and back, but still worst in it's original spot, lower right.  If it's actively bothering me, I can get a crippling pain which makes me breath really shallowly and slowly for a moment, so as to not move my rib cage much.  Sometimes applying pressure to it helps, a bit.

It was the first neuropathic pain I had encountered, that I knew of.  My doctors haven't called it anything, just gave me meds for it.  Nerve blocking meds.  It was while browsing through ms sites, a year and a half ago, that I found the name for it.  Now I know this is what it is.

Erica

[doublevision1]

I've also heard this referred to as "banding" and "girdling."  It is neuropathic pain around the mid section caused by a spinal lesion.  "Hug" is far too warm and fuzzy a description!  I had it for a couple of weeks last fall.  It did feel like someone had me in a VERY tight grip, so bad that it was difficult to roll over in bed and even made me feel short of breath.  I also found that it was worse after eating a large meal.  It subsided along with some other symptoms with a course of Solu-Medrol.  

db1