Flair? or over reaction?
 

First, let me say I took my 2 week copaxone break, and went back on this stuff kicking and screaming, and will break down and cry if someone tells me that I caused this by taking a break.

Once or twice a year, I get this weird tugging, sensation in my intestines just under my right rib cage. many MDs through the years have said "come see me when it happens again" I call, and they say "we can see you in two week." its gone by then. The new AlaCarte MD said "come in today!" so, in I trudge. I feel like i have to lean to the left, and I cant explain it any better than to say, I feel like my liver is trying to flip over. He was impressed with the size of the muscle that was standing out on the ridge where my liver sits. After careful palpation he said he doesnt think its my liver, but...off to CT scan I go. Negative! off to Xray I go. Negative! blood work all negtive incl LFTs and CBC except small rise in platelets which is normal for me.

I normally can have that tug feeling under my rib cage, but once or twice a year WOWIE! it literally feels like my liver is trying to flip. All those who have been pregnant, and remember the feeling when the baby swooped, and rolled over? I keep expecting that to happen to my liver! anyway, After much poking, and some careful questions by the ala carte MD he said he can find nothing truly wrong, and found it bizarre. He has schedule me to see a surgeon in the AM "just in case" He also said "do you think this could be an MD thing for you?" Huh?! Not one MD has EVER said that this may be MS related....why didnt I think of that?

So, cast your votes now! what is your opinion. Btw, you should know I just got over an ear infection, and was and still am running a low grade fever, which always makes me feel poopy. I dont normally run a temp when this silly thing happens.

This has been happening for at least 10 years, and each year its a lil more intense than the year before. it will leave in a few days or up to two weeks is my record, and then...it will be quiet till next time.

Has the fever caused me to lose my mind? did I have one to start with? it wasnt a long trip to lose it...anyway....

It is 24 hours a day without break.

What is this? Is it MS?

I had a "thing" quite a few years ago before MS was confirmed where it felt like a baby kicking and/or turning (no chance!) under my ribs. It lasted a few weeks. It wasn't painful; just strange. I didn't do anything about it, but I was mystified. After MS was confirmed I just figured I'd blame it on that.

If yours has been coming and going all these years, it probably is just an annoyed muscle, brought on by the fever. I would think anything dangerous would have showed up in your tests or at the very least, caused some major pain. Sounds like your Dr. is on top of things.

Keep us posted!

C

NO WAY!! My neuro thinks I am crazy when I told her about that. It's happened to me a few times in the last year and normally lasts a week or two. The last time I actually went and bought a pregnancy test just to be sure! I am so glad I am not the only one!

I hope it's not a flare, Dej..:hug:

It could be one of those change of weather thingys.:mad:

(((Dej))) Giving you gentle hugs.:hug::hug:

Could it be from MS, absolutely. It sounds like a milder form of the hug. This was one my presenting symptoms and one that I now deal with on a daily basis to varying degrees. I have it on my left side and when it becomes more "active" you can actually see not only the muscles in the ribcage but the complete outline of my stomach.:eek: Ouch!

The good news is that your liver appears to be functioning normally. Phew!

I hope it is not a flare and that you start feeling better soon.:hug:

The way I think of it is, anywhere that has nerve endings or a nerve supply, in theory, can take damage as your myelin is eaten away.
Though the liver has no direct inner nerve paths through it, it does have a supply to the bile duct and surrounding areas, portal veins and hepatic arteries. Otherwise the blood supply would not be under control.

So I think that where there is a nerve, there could be damage.
Now whether this damage can cause pain, discomfort or sensations is another matter.
But if nerve damage in the spine can cause you to feel 'water running down a leg' , then I think anything is possible.

Take it easy. :hug:

OK, maybe I understated the pain level. it has been rocking on a 7 out of 10 for me most of the day. it doesnt stay there, it can go as low as 4 but ramp back up to 7. its PAINFUL! :(

I loved the feeling of my baby rolling around my tummy, and that is the only way I can describe this, BUT it feels like he grabbed onto my liver and is yanking! I am not preggers, long ago had the factory shut down.

One theory is that the fever from the ear infection set off a flair. The MDs cant find out what is making this happen, and clearly can feel it when they put their hands on my tummy. They have all said they have never seen anything like it. Dont ya know its special when they call in an office partner to "come see this thing!" :eek:

I have written an email to my neuro office, I am sure they will respond bright and early. Its HUGE for me to go see a surgeon for a second opinion. I am a "stop touching me" kinda girl.

Thanks for the hugs and well wishes. they mean alot. :hug:

With the new description - I am thinking more HUG! It is at times extremely painful. When it is bad the only thing I can do is lay flat on my back. I also get lots of shooting, sharp, burning, and stabbing like pains. Not to mention dam* near passing out and throwing up from the pain. Truly, it is not fun.

Like you, I am a don't touch me kind of girls as well as a stop breathing when in pain kind of girl. I don't scream out, I become real withdrawn and quiet. (No wonder DBF likes it when the Hug acts up. :D j/k He really doesn't as I get pale and sickly looking, etc from the pain and he wants to help but feels helpless as there is nothing he can do.)

Also like you, for me to even pick up the phone and call the dr is a major deal. I hate, hate going. (Hence the reason I ended up with a 2 round abx sinus infection). And to go to the ER is even a bigger deal. Working in one is one thing, being a patient in one is totally different.

Let us know how things turn out for you and how you are doing. In the meantime, try laying flat on your back with your arms over your head and take some deep breaths. This does help. Additionally, ice packs on that side may help. Ice is great for nerve conduction.

Dejibo,
I want to say that I don't think it is MS, JMO. I can only compare that I have had this and so has a friend of mine without MS. I was going to my GI doctor for my other problem years ago, and while there I had him feel the sort of bulge under my Liver, right above the waistline.

It felt very uncomfortable most of the time when it was there. I was getting it off and on during the last 10 years. I think it started even before that, for I was tested for gallbladder a long time ago.

Many doctors had tested me for gallbladder, liver tests, GI tests upper and lower, many scans and nothing was found. It drove me crazy.

He, being a GI surgeon, said it was a misplaced muscle that can spasm at times. It can bulge and you feel the movement. The bowels tend to set it off at times too. You could have twisted it or pulled it, he said to me.

It goes back into place again. That's what I think it is. I hope you are not having a flare.

When I changed ins and didn't get my "C" years ago, my MS Specialist said don't worry you are covered with the "C" for 5 months, it will still be working for you until you get the med again. So I don't think it is the drug holiday. JMO of course. :)

Dej! :hug:

I agree with what Lady said, and my neurologist said the same thing himself. Even though my MRI was much, much improved since the previous, and I had stopped Copaxone 3 months earlier, he said 'You still have the drug in your body for months after'. Shared Solutions even recommended me a drug holiday, so no I don't believe it's a result of the drug holiday.

Does sound like the hug, and a painful one at that. I went through a period (pre-diagnosis too, go figure!) where I actually had ultrasounds done because I had such pain in my right side under my rib. Everything checked out and my chiro worked on the muscle in that area, and it calmed down. I think stress caused mine. :cool:

you have all made me feel so much better! even just to know I am not alone chasing the silly stupid feeling. My DH says "if all of these MS women have been talking about the same sx, then...doesnt that by virtue of the evidence MAKE it an MS thing?" bless him. He is frustrated, and i have been trying to not whine, and not stop the train of activities that we have been dealing with. I have been laying down more often than normal, and resting as much as possible. My MD is generous with the pain pills, and is willing to work with me till we figure this out.

I woke this morning, and its about a 5 on the pain scale, and the spasm tht I feel is pulling my liver is much less intense. I have a surgical appointment at 10:30, and will play the game for as long as its here.

btw, I have seen a gastro in the past, and she said that after an exam with keyhole surgery, and a full colonoscopy, and endoscopy that she could find nothing wrong or inflammed with my intestine. She placed me IN the hospital on full bowel rest for 5 days the last time it was this bad. She gave me a demerol drip, and fed me nothing but IV fluid. It was immensely helpful. She had long since given up on finding what caused it. We thought it may have been a trapped nerve from the gallbladder surgery, but it was happening before then, and was the reason they went after it. They didnt cut the muscle in my surgery, just pulled it to the side. She was an amazing woman who exhausted her entire office skills onto me, and we never did find the answer. She moved away, and I sort of gave up after that.

I hate puzzles! Just tell me what it is! I dont like limbo land. If its the hug, at least my mind can say "oh! thats the hug, it will go away after rest, and a few days of quiet" even though its the same thing if I dont know what is causing it. Since my liver is fine (has been examined while in key hole surgery to explore my intestine when this was happening, and the LFTs are fine, and my intestine if fine, then I come here, and see so many here have the same thing...maybe i am over reating. maybe it just is a version of this hug.

Off to the surgeon. I just hate going to see folks that scratch their head and say "dunno, never seen anything like it." grrrr...At least I can lay down for the rest of the week and weekend, as the DH cleared the rest of the schedule.

Thanks for the cheerleading. We all need cheerleaders. Telling me your opinions, and stories helps me feel more normal.

Good luck today and let us know how it goes.:hug:

For me, when it gets bad, I can't eat. I drink lots of different kinds of smoothies - recipes I made up. I just don't digest my food well. If what you have is the hug, I can see why being on the IV fluids helped. It gives your digestive system a break.

I have been "scoped" as well, an EGD. They did find that the nerve endings in my stomach were hypersensitive and when touched the stomach would spasm. At the time they were looking for an ulcer. We did not know that I had MS. While I had lesions, on my neuro exams I did not have any neurological findings to support MS or any other neurological condition.

Again, good luck today.

Deb - I have had absolutely tremendous abdominal spasms from MS. My neuro absolutely states that this is possible. One day, I bent over to pick something up and everything locked up and I could not stand up. I literally fell over on the floor because I couldn't straighten back up. Even after it relaxed somewhat, those muscles were just so messed up for days. It was more on the one side than the other and I couldn't really straighten out completely for awhile even with increased baclofen. Do you take Baclofen or any other anti-spasm type of drug?

BTW, I don't think this is a true flare. If you are getting over an illness and running a fever, it is probably a pseudo-flare. I really feel for you, pain like that is just awful.

and the surgeon says...
 

I like this guy. Very good sense of humor, and said..."I know just what this is!" I said "oh really? 20 years of other surgeons havent been able to figure it out. From ENT to gastro to reg surgeons and reg MDs to ...I am just sick of it happening. Want an answer" He asked a few questions, and then said...its a "Cecal Bascule" gonna have to look that one up.


in essence. My right sided Large intestine is no longer attached to the wall of the abdomin. it can sometimes be that way from birth, or can develope from childhood. the intestine flips or loops over ontop of itself, and pulls downward. That large loop that everyone keeps feeling is actually the intestine that has flopped over. He said that in itself would be enough to create the "ms hug" feeling, but only one sided. As far as he knew (and he admitted that isnt much about MS) the hug is double sided. With stretches and rest, I have been able to correct the condition, but as time marches forward, it can be more and more severe. He said as long as I can stand it, he wont be looking to do a thing about it, but when the pain reaches a threshold of "help me" he can do an emergent removal of that peice of the intestine, and sew the other ends back together.

I told him I wasnt ready to throw in the towel today, and wanted to research this a bit more.

He said he still wanted my MS team to weigh in with their thoughts on the MS HUG thing, and next time I am in excruciating pain, to go to the ER, and he will have standing instructions on the tests he wants, and while mid flair, the CT scan should show the flip or peice of intestine that is no longer attached. He gave me props for being so tolerant of pain. Said it can be incredibly painful. I DONT want ANY Surgery for anything, including a hang nail! What he said makes sense, and explains many things. Lets wait and see what the MS team says about his theory.

Thats my story.

I was thinking. :) Do you do stomach shots with the Copaxone? I avoided them, it hurt too much. Do you think the "C' would aggravate the right stomach area causing swelling,colic pain, and the twist pain in the area you are concerned about. "C' does stay in any location for a while, until it absorbs.

If you do stomach shots maybe eliminate that rotation for a while. As I said, just a thought on your pain. I hope you get it sorted out. It is so hard to define what causes what, when we have other problems in the mix.:hug:

Wow, Dej...I began getting this very pain yesterday. Glad I read your thread. I can actually feel more pain when I feel the muscle on top of the bottom rib that sits over my liver. I thought at first it was gallbladder or my liver but I'll wait and see if it gets like yours. It did feel like a painful tugging...couldn't believe how much it hurt.
Hope you get relief soon...:hug:

he did say he sees this more frequently in folks who have autoimmune stuff, and cant explain why. Lupus, Lyme, parkinson, Arthritis and so on, not just MS. its just one corner of the intestine that comes unhooked, and can fold over on itself. Normally when this happens, you get very constipated, and wont pass much if any gas from below. Gassy burps are normal and leaning to the left to make your guts stretch usually helps the pain. I am ALWAYS constipated, and he said this may answer one of those questions for me. The Large intestine is supposed to pull water out of the stool, after the small intestine puts it in. If this thing is floppy and not doing its job, it may be over reactive, and pulling out too much water.

I did ask about the tummy shots, and he said its not an issue. the C is a fat based drug, and I am not shooting the upper section anyway. If it was a muscle, or upper shot, he would have second thoughts, but since its fat, and low, dont change what I am doing.

He said he is convinced that I will reach a point of "help me" and then he will end up removing the unhinged peice of intestine. I asked why he couldnt just tack it up in place, and he said normally once its been unhinged for so long, its no longer doing its job anyway, and can even die or become infected. He said he believes that I will make the right choice when the time comes. Till then he is around. I was happy with his answers, and his ability to explain his answers.

Just what I needed! another rare thing in my life. He said to have that peice of intestine removed, I would poop more often and it would have a softer consistancy. I said as long as I dont go to the other side of the scale, and have diarrhea and need depends. I hate being sick!

Well it's good to know what's going on at least. how interesting :)
Thanks for sharing the information. Hope you feel better soon :hug:

I have been miserable for days now, and if I didnt have this silly cold, I may have gone in to ask him to fix it. I DONT want to be coughing post op. That is not my idea of a good time. Its also a holiday weekend, and even if I went in, they would just medicate me, and leave me in a strange bed till Tuesday. Still not my idea of a good time.

I have good drugs here, and can rest, and putter, and be in my own bed. This is either going to get dramatically better, or I am gonna have to go in Tuesday and ask for help. I am simply wiped out. I have lost 8 pounds simply because I am so nauseous I dont want to eat. I have been eating lil bits of easily digestable foods.

I am happy to know they can fix this, but so worried about what will happen when they do. I know they will have to make a big mid line incision, but I am worried about the loss of so much large intestine. Will I go from ultra constipated to a loose stool girl? will I have to jet to the potty or be dirty? I am hoping to come back to mid line, and not swing to the other side of the party.

Thank you for all the PMs and emails and hugs, and cheerleading. you guys rock! :grouphug:

I could make a joke, but I'm not sure you are up for levity about this just now, so I will keep my mouth shut!

I do hope that you can get it fixed, though, and that it will help you out and not cause further problems.

Hey! Im spilling my guts out over here! :D:p

Actually I am feeling quite a bit better. I have my cough under control which was a major factor in keeping this thing ticked off. I have been working very hard just to get things into the calm down lane. I DONT want any kind of surgery while I have a cough. Can you imagine? I would just be in agony.

Have made a deal with the surgeon that the next time this happens, I will go in for an urgent CT scan, and then it will be a 99% chance I will have the surgery, but I cant even imagine with a cough. They said no keyholes for me, they would have to do big boy surgery, and would take about 3 to 4 feet of my intestine out. WOW! :eek:

I really hope you feel better soon Dej :hug:. This surgery sounds like the bowel resectioning that my son, who has Crohn's, had three years ago when he was 15. They really have remove a good bit of intestine for it to have a bad effect on you. I know his situation is much different than your's, but he doesn't regret the surgery one bit :). He didn't have it done until it was a last resort. I don't think he would want to put it off again :). I made the decision since he was so young.

It sounds like this procedure will really help you. Surgery sucks but with pain you're having, i'd seriously consider it.

Feel better, Dej.

Did the surgeon mention the possibility of a temporary colostomy bag? My son didn't need it but he only had about 8 inches removed.

Aww Dej, one thing after another huh? :hug:

At least you can rule out your vacy from Copaxone in this one, and you did get the answer to another health issue that could have been much worse if left undetected (who knows right?).

Be well!

Dej - it sounds awful! Hope you're still feeling better today though.

it's funny - I've actually had a sensation like that before, and I don't even have MS. (well, nothing dx'ed.....you know......)

It was on my 'dodgy' left side (a lot my sx's seem to be on the left)
and felt like just as you described - but not as bad as yours at all - like my insides were doing a flip.. or I had something in there! (yes, felt like a baby squirming).

If all your tests are clear, and others on here with MS experience it as well... well, surely it's an 'MS thing'.....?

:hug:

Feel Better Dej..:hug::hug:

I am feeling half human today. This cold has kicked my butt! I almost never get colds, so when I do they are a big deal for me. I have had a fever, and a cough for like a week now. Enough! I was at the grocery store shopping, and even though I wiped down the handle, I remember on the ride home, I broke my own golden rule, and wiped my eyes. I had like a sleep booger in my eyes and I remember rubbing them. What was I thinking! Then I slept with the fan on, and wet hair and woke freezing. Let the sore throat begin. All the zicam in the world wasnt enough to prevent this sucker from taking me.

Now that the coughing is calming I am hoping this will allow my poor tender tummy to rest, and calm. Its really hard to get your tummy to slow down, and get rest when your hacking. I cannot imagine tummy surgery while coughing. no way!

Expecting the MS center to call and weigh in on this issue. It was a long holiday weekend, and I left a message about the MS hug vs this intestine thing. Thanks for all the hugs, and well wishes. they really do help. :grouphug:

Im glad you are feeling a little better this morning Dej.:hug:

OK, Deb, my little pun / joke was that it sounds like the surgery could be a crapshoot! Hope you aren't offended. I really do think that it would turn out fine for you. In fact, my Grandma had part of her colon removed years ago and she never noticed any ill effects from it.

I always joke around about things like this with me. In fact, one of my doctors told me my humor was inappropriate! I told him that it was my body and if I chose to make fun of what it was doing, then it was my business not to mention my way of coping.

as a nurse/medic I learned "tumor humor" long ago. Things that would make the public gasp and think we had lost it. Its a great way to relieve the stress of a bad situation.

Thanks for the giggle. :cool:

Finally got a call from the MS center. I would have to not be well on a long holiday weekend. its a skeleton crew there today, but they did discuss it, and have all decided that what I describe does NOT sound like MS sx to them. Said what I am describing would be quite rare, and while not impossible, it would more than likely be intestinal, not MS. MS can affect the intestines, and ....you can hear the story in your own heads. They reccomend follow up with surgery MD or general MD to get more conclusive proof of what is making this happen.


DH is now getting on board, and is not happy with the lack of progress I am making, and has asked me to let them at least do the CT scan. I have agreed. I have eaten nothing but soup, and mush for a week now, and have lost 10 pounds. I wanted to lose weight, but not like this.

I was asking about stopping copaxone around surgical time, and was told "probably" but since no one was left in the office to ask, she will get back to me. She said she knew I wanted to stop copaxone, but this was drastic, yes? another one with "tumor humor"

Please do get the CT scan and keep us posted.

Yeah, Deb, you probably didn't have to go to this length to get another copax holiday! Glad you can appreciate my twisted humor (pun not intended).

I have lost more than 10 pounds, am touchy, and painful. While my coughing is better, the little bit I still do isnt helping my tummy heal any quicker. I called the surgeons office and asked for that CT scan. Its scheduled for tomorrow at 7:30 AM! good thing I am normally an early riser. Sheesh! thats an obscene hour to get up and be ready for anything.

Cross your fingers for me. Its just a CT scan, I keep telling my self, its just a CT scan. YEp, I get to drink nasty liquids, and gag my way through the junk, but its just a CT scan. I just have to lay down. Why do I get so nervous?

This scan should show if I have the "folding" pattern in my LOWER intestine. This is why so many folks have missed it in the past. The upper corner has become unhooked, and that causes slack in the line, and a "folding" pattern of intestine in the lower pelvis. The pulling from the intestines folding and putting pressure on the line makes that "tug" sensation I have been feeling. As it goes on year after year that tug pulls down more and more of the intestine into the fold. Since I am not completely recovering from this episode, he feels it may have pulled down even more.

I dont want a right hemi colonectomy! no thank you! why cant this be a hang nail and I get an RX for a manicure? or a massage? come guys! work with me here.

I get this to and literally it feels like a baby kicking. I myself even though I have my tubes tied have went and bought a pregnancy test on a couple different episodes of this. Well I didn't want the doctor to think I went crazy. So I have never mentioned it before. But if you find out what it is please let me know as well if not we can always say its the MonSter inside of us.

Had my CT scan at the crack of insanity this morn. I was at the hosp at 5:30 am and they gave me that yummy berry flavored crap to drink. I complain bitterly when they give me that stuff, because its full of aspertame! that stuff messes with me, and gives me a brain splitting headache for 2 days after having it. They no longer carry the plain stuff without flavors. When they offer you something to drink now, its DIET! they dont carry regular ginger ale or juices, its all DIET! aspterame and I dont get along. So, they give the nauseous girl something yucky to drink. I choked it down, and was ever so proud, and then waited for it all to sink to the bottom. Got in the room, and he hands me another glass to drink! I took two swallows, and starting gagging, and he said "thats enough!"

They took a complete history, were careful to elicit questions about where on my tummy I feel the pain the most, and they were careful to listen. They re read the MD notes and re examined me, and asked me to hold my hand over where it hurts the most, while they lined up the machine. Last CTScan was 7.5 mil slices. This one is 2.5 ml slices, so much more detail.

Will have more answers in a day or two. Till then, I am nauseous with a headache, and am crawling back into bed with my kitties. I hope they can figure this thing out. Im tired of it.

are you feeling any better??? :hug:

AWw thanks for asking Puds friend. I feel better, and then its back, and then its better, and its back. My coughing is down to a dull roar, and I am hoping as it goes away, that will help my tummy calm down.

No word from the hospital folks. Last I heard was there were several of them combing over the scans, and hang in there. I was reminded if I couldnt take it anymore, I could go to the ER, and the surgeon on call would see me night or day. To be honest, I am hoping to avoid any surgery. I would prefer to handle this will rest or something.

Will have to wait at least the weekend to hear "official" word of what even more folks think this is. till then, I am in the very slow lane.

I'm so sorry Dej, the pain, the tests, the waiting, it all sucks :(. I hope you get some news and relief soon. :hug:

heard from the surgeon. He said...

1. dont see the flipped over intestine that would come with the cecal bastule. Dont see the fold that would ID it as that condition.

2. They see that I had a dialted junction, but that would not explain the sx.

3. Cannot see any reason why that corner, or bend in the large intestine would be so painful.

4. will continue to pour over the results with the gastro/radiology/surgery team.

5. if nothing else can explain it, they MAY have to chaulk it up to being an MS "hug" or MS issue. Since no other tests have proven or disproven anything else, they feel that perhaps it just may be an MS related issue.

the surgeon was extremely nice, and told me he is not dropping, or dismissing this issue. I have given him quite the puzzle, and he wants to figure this out. He doesnt want me to feel I am being pushed into the "its just MS" corner, and promises to keep pegging away at this.

Since my cough is getting better, so is my tummy. I seem to be past this flair.

yes, they are technically calling this now an "ms flair or relapse" well....crap! again, I ask..."flair or over reaction??! I have been so stressed by this stupid thing.

Have I said I HATE THIS STUPID DISEASE? :(