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Gastric issues - who will take ownership?

Today visited neurology where ms nurse was off sick so I saw a lovely neuro physio who went through my notes and discussed issues Id been experiencing.

For a very long time Ive been suffering GERD. Since suffering ms, had swollowing problems and slowing motility of foodstuffs, making me often sick. Ive also experiences a slowing of the bowels etc. Ive always said since diagnosis that ms has made matters worse, been assessed via gastroentologist who referred me back stating: a slowing of bolus, some swollowing mechanism slowing and hernia, with associated GERD. Stomach spasms probably due to ms! Ive also often experienced spasms in and around the gastric system making me throw up when it all slows down. This happened from January to July this year, non stop - and now Im suffering with my osteoporosis, which I think is due to not getting adequate sustinence (ie: broken/crushed vertibrae).

During conversations, it was noted that neuro thinks none of my gastric symptoms are ms related. So gastro think its related to ms (swollowing, slowing motility and spasms) so sent me back to neuro. Now neuro thinks its not ms related. Im about to undergo tests to see if I suffer EDS (Ehlers Danlos Syndrome) too, for which some symptoms may be connected.

I just wish someone would say: ah yes, we know the cause and why youve got it, instead of being batted around the nhs like a rubber ball.

Im now of the opinion that Im to be left in limbo, and would like to know other msers experiences with gastric issues and what their neuros say? Is it my fault??? - am I missing something.

bren

x

Hi bren, ill make space for you on the merry go round of what the chuff is this?`

I was having a lot of heartburn and pains in my chest and up my neck and into my teeth!!! Saw a cardiologist who dxd me with acid reflux! I now take 15mg lansprazole every morning and the acid cant form. I very occassionally get it now, so I swig a bit of gaviscon to quieten it.

good luck on the EDS front…another nasty, unforgiving desease. Poor you…having more than your share of problrms to deal with. Not fair, is it hun?

luv Pollx

Hiya Poll,

It would seem our medical professions no longer want to take possession of anything. Is there an ulterior motive, like leaving the patient in limbo dealing with their issues. Im wondering if a symptom exists but is not confirmed (although mine and yours are) then we are not on anyone’s list, or it doesnt really exist, only in our imagination. Can you tell Im as confused as Im meant to be now nobody will take ownership of my gastric issues.

Im taking pills till I rattle. However trust us to get something which isnt attached to anything in particular. Maybe Cameron may wish to take it from us too?

More like if it aint confirmed as belonging any group of diseases, we suffer a limbo disease?

bren

x

Bren, We seem to know more about what is MS symptoms - then the so called professionals. They should be made to read these sites. Recently, we have had pwms being told that Raynaurds is not ms - and we all know it is - as so many of us have it. Stomach/bowel/bladders/ swallowing all need a good control over muscles - which we do not have.

lts time that all the different specialists learnt more about MS - the neuros need to ‘share us’ as our illness effects so many different parts of our bodies. The gastro-enterologist l saw - and had all the ghastly tests - came to the conclusion l had ‘rapid transit’ as everything just goes straight through at a rate of knots. Sometimes l have choking fits - and l know this is MS. l have been on vit d3/ b12/LDN/ probiotics and many more and am now better then l have ever been. l do take a high dose of each - but then l feel l need this. So by ‘self-treating’ l am better now for the first time in 30yrs

F…

Hi Frances, you make a lot of sense by treating yourself! If we didnt do this kind of thing, how much worse would we be? Doesnt bear thinking about, eh?

luv POllx

Another thing Bren - Since taking so much vitd3 - my bone-density levels are back to normal - as l suffer from osteo-porosis and fractured my ankle so badly 2 1/2 yrs ago. l am back on hrt as well. Golden Linseeds are also a natural HRT.

F.

Well done F,

I know for a fact my gastric issues have evolved since being diagnosed, so now swollowing, food transit slowing and spasms are all ms related, as is my slowing of my bowel and bladder playing up.

I too think like you, we are masters of our own bodies and know what is right and what is not. We equally know when we are relapsing because if it was there all the time nothing would stop the relentless onslaught (Im RRMS). Im going through a state of calm where gastric issues are concerned, but it only usually lasts for a few months, then back on the merry go round.

Im glad youve found something which helps. Im taking vit.d3 for my bones and ms and evening primrose oil which seems to help with itching etc. Ive the opposite to you, everything backs up then the acid comes to reach the food in my gullet.

Seems we are mostly left to find our own solutions, but indeed neuros need to update their knowledge of ms symptoms and the possibility theyve often missed things because theyre only going on what is written rather than using their imaginations.

Isnt it a good job we are strong individuals, but what of those who arent, shall they be passed from pillar to post like me?

Take care,

bren

x

I really feel for you bren, you put up with so much. I hope you get to the bottom of this soon x

Hiya A,

Having gastric issues most of my life, GERD was quite normal, however spasms, swollowing issues and slow motility of foodstuffs is MS RELATED, not only am I experiencing it, Ive read about it, and heard others on here say theyve also suffered. Ive had every test known to man and even they state its probably ms related.

Me thinks my neuro is playing silly b.ggers, because our feelings are quite mutual!

bren

x

Hi, I have also suffered increasingly from gastric issues since having MS. It got so that even a drink of water gave me acid reflux. I was having painful heartburn and acid coming up into my mouth and even out of my nose when lying down.

Neuro said it’s not MS related but I think it is. If it affects my bowels then why not my digestive system?

It got so bad that I constantly had a sore throat from the acid.

I tried changing my diet and tried natural methods like unpasturised cider vinegar… but nothing worked.

Eventually I went to GP and said I couldn’t stand it anymore. She gave me 30mg a day of Lansoprazole for 2 months and next week I go down to 15 mg a day.

NO more heartburn at all !!! It has gone completely (and hope it still works on lower dose).

I do believe that MS causes digestion problems. Just too many of us on here who suffer from them and didn’t pre-MS.

Not your fault. Neuro’s just will not accept that it’s caused by MS.

Pat x

Thanks for your vote of confidence in my ability and that of other msers including yourself to know our own bodies and what is and what is not ms. I just hope neuros begin to listen, gather evidence from their patients and update their knowledge. I thought this morning I misheard what was said. Gastro problems - not ms related??

Youve made me feel like an mser again (not that that is good) however, sharing knowledge gives us confidence that no matter how many knocks we receive, we know we are amongst good company!

best wishes

bren

x

When I was 35 I had a very nasty bout of Optic Neuritis, losing my sight totally in one eye. The same year I was diagnosed with IBS after suffering similar symptoms to the rest of you. It would be 18 years later when I finally got a definite RRMS diagnosis, in spite of many years of strange symptoms. Yet still my GP says the gastric problems are MS but my neuro says they are not. Earlier this year I developed Iritis and my GP said it’s the MS causing this, the Opthamologist said it’s the MS, Rizzo did some research for me (as I could not focus to do my own) and the research said it is MS related but guess … what my neuro said NO! So I guess we are often alone with the medics, thank goodness we are never alone on here. Be Well Pat x