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.