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Months of nausea and now pain - MS or liver or what??

Hi,

Another moan. I’ve had persistent nausea since December, and put it down to MS (having checked for BPPV). Then two weeks ago I started getting constant back pain and pain/tenderness around my ribs, right shoulder, knock out fatigue, and thought, hmm, liver/gallbladder? Went to the GP and she said I had a mass on my liver, and that liver/gallbladder problems could well be the cause of the nausea! Cue responsible online research - lots of things that could seem like MS, but were actually liver etc.

I got a private ultrasound scan done today (not prepared to wait six weeks) and thankfully liver; kidneys, gallbladder etc look the right size and in good shape, with no ‘mass’ to be found. Doesn’t mean that there isn’t something going on but good news.

Sitting still, I’m ok - bit of pain - move, and I feel rotten, pain gets worse, head rush, nausea. Waiting for blood test results, but after waiting 15 years for MS diagnosis, I’m desperate not to be fobbed off. Trying to remain calm but arghghhh!!

Anyone had anything similar?? Or is this welcome to the world of co-morbidities??

Moan over, thanks xx

Good lord!

Sorry… i am clearly incapable of offering anything other than the utmost sympathy. Your situation sounds bloody awful; not just for the physical discomforts, but by the mental tortures of being messed about by those you would expect could help!

I hope you find some concrete information and thus relief soon. Very soon!

All the very best to you.

Hi Becca,

Oh Dear ! It sounds as if you are in a right proper pickle - my utmost sympathy! For what its worth, I had very similar symptoms three years ago, and it turned out to be my gallbladder, which was described to me as looking like a ‘sackful of marbles’ (!). However, it wasn’t so much the stones that caused the problems, but an infection of the common bile duct ( a very tiny stone probably got stuck there and picked up some bugs on its way to my intestines) which unfortunately meant a couple of days stay in hospital and treatment with intravenous antibiotics. The problem cleared up, and hasn’t been back since. Like you I had a scan of my liver , because I have have some auto immune problems in that department, and there was concern that one problem may be making the other worse, and vice versa, but fortunately all was well in that department.

Ring for your blood test results every day if you have to - you shouldn’t be fobbed off if you are in this much discomfort! ( and it must be bloody AWFUL, if mine were anything to go by). Keep telling them that its making all your symptoms that much worse and that you would appreciate an answer sooner rather than later.

Hope you feel much better soon,

M x

Hi Becca

Are you on any DMDs? And is it liver function test results that you’re waiting for?

I’ve had hepatitis twice. Once was unexplained but the second time was definitely due to an adverse reaction to Tysabri.

My liver ultrasound was also fine. A very healthy looking liver apparently (I was very happy to know there was no sign of any wine related damage!).

The problem could be that having one auto-immune disease makes it slightly more likely that you’ve got another one. So auto-immune liver disease is possible.

But a liver reaction to a drug is also likely.

What I was told last time was that the Tysabri had caused the liver reaction but that an auto-immune connection could be involved.

Sue

Thanks for your kind words - it helps ! :slight_smile:

I have found out that there is a liver auto-immunue disease, and I want to get checked for that, as I’ve heard they can come in pairs. I’m taking fingolimod, which can also affect the liver. The GP had never heard of it, so I can see I’ve got some explaining to do - the MS team said I had to err on the side of caution when it comes to possible infections.

My partner had a blocked bile duct due to gallstones, and I’m certainly not in the agony he was, thank goodness - more of a grumbling constant soreness.

I will keep fighting the good fight for answers/advice, and hope it just goes away in the mean time!

All the best

Rebecca

xx

Hi Becca

I have fatty liver disease along with the rest of the collection; this kicked off around 2004/5, tired all the time, feeling sick, gaining weight, pain under the right side of my rib-cage. GP (after thinking I was just eating too much and getting fat - soon disabused him of that line of thinking - the really dark pee in a jar helped) thought Gallbladder, scans showed masses in my liver, the next scans showed the masses to be fat collecting in my liver - blood tests showed that whilst there was some damage, no - I was not alcoholic, which meant my body was not processing nutrients/fat etc. properly and instead of converting to energy was storing every scrap of fat it could in my liver, which caused me to feel sick as a dog and have the pains mentioned above.

DRUGS or DIET? I went with the seriously low fat diet from then on, excess weight gone, loads of energy - my Friday night training buddies at the Strength & Stretch Class often asked how I could have so much energy before, during and after the class.

Fast forward to 2013 - weird symptoms, xrays, blood-tests, scans, more scans - we’re pretty sure you have MS but we’re going to hang fire on giving a definite diagnosis until you have a relapse.

I have read somewhere that there is a higher incidence of fatty liver disease in people with MS than in the general population - not sure if that is strictly correct as most people never know that they have FLD.

Still - worth checking out those blood test results; You might want to chuck N.A.S.H into the conversation - Non-Alcoholic Steatohepatitis - that’s what happens when fatty liver starts to cause Cirrhosis, blood tests can tell the difference between N.A.S.H and the alcoholic variety.

And… drum roll… it was MS! Luckily I had an appointment with my consultant yesterday afternoon, and had the blood test results to show him. These were all as he expected, with low white blood cell count due to the fingolimod. Yep, MS bowel trouble could cause the nausea (dosing up on the wheat bran and linseed, which seems to be helping a bit!), yes the pain could be caused by MS… He has booked me in for an MRI scan, another appointment in three months, and gave me a prescription for steroids! So, great that he’s taking it seriously. Did I really want something (not too serious) wrong with my liver/gallbladder, to stop it being the MS?? Possibly, in a daft way :confused:

Anyway, now in steroids mode - lots of low fat nibbles for the dead-of-night nibbles, and some TV programmes downloaded to watch if/when the insomnia kicks in.

Onward ever onward folks xx

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Hi Becca

I’m glad you’ve got a result. And really it’s for the best that it’s ‘just’ MS rather than liver/gall bladder etc. But I do understand how it feels, that sometimes you almost want it not to be MS. Because at least if it’s something else then maybe it’s curable rather than something that you know will take time to maybe go into remission.

Glad too you have lined up snacks for late night TV sessions.

Sue

Hi Sue,

Thanks for you kind words :slight_smile: I’m feeling very lucky this morning, as insomnia hasn’t kicked in and I’ve had my third good night’s sleep in a row!

All the best

Becca