Misdiagnosis?

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Hi, I was wondering if anyone has been diagnosed with CFS/ME and then it turned out that doctors had missed something? My daughter is 15 and has been ill for over 2 years - we had to take her out of school last year as she wasn't well enough to go.

​She became ill just after a virus and starting her periods. She has always been thin with not much appetite. Over the two years her iron levels have gone from being in the normal range to being anaemic, her B12 levels are going down (although normal). She's always had stomach aches, excess wind, indigesttion, diarrhoea, constipation, hemorroids, mouth ulcers etc. She has seen paediatricians, CFS specialists, rheumatologist, and countless GPs and has been told she has ME and IBS.

​Just recently her C reactive protein came back as slightly high (it was a year since they last tested it) so they did a faecal calprotectin test (simple stool sample) which has come back high - showing inflammation in her bowel.

I'm now wondering if they've missed something and she's got something more serious? I've had to fight so much to get her the right help and will be so upset if she in fact has something they should have found a year ago.

​She's going to see a gastroenterologist on Monday so hopefully we'll get some answers.

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  • Posted

    I wouldn't know but I just want to say that ME and IBS are very serious conditions and many of us have digestive problems, and allergies, does she have those? And does she have brain fog?
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    • Posted

      Sorry, I didn't mean to sound like I didn't think that ME and IBS aren't serious conditions. My daughter has had ME for over two years so I know exactly how devastating it is - it's life changing. I suppose I've just been reading about Crohns and it's scared me a little! (I really should stop reading things on the internet)

      ​She has all the symptoms of ME, brain fog, exhaustion, muscle/joint pain, anxiety, allergies etc.

      ​I've seen no improvement in 2 years - in fact she seems to have got worse sad

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    • Posted

      hi, People with me cfs fibro do get gastric disturbances along with other systems affected, multi system symptoms,  but it doesnt mean people cant have other conditions on  on top of it, many do.  l guess she,s not seen gastroenterologist or had scope previously, l had one that showed inflammation in stomach duedenum, put on omprazle for it, which has helped. With the inflammation being in her bowel, it is possible its chrons, or other bowel condition, but if no blood loss thats a good sign,  there,s a few other bowel probs, including coeliac affects.  Many people take year or years to get diagnoses of unusual conditions, took me years to get diagnoses of intersticial cystitus, again through right specialists and scope, its a shame, more so when she,s young and missing school, we always feel bad for them, but she is now seeing a gastrologist, so maybe youll get some answers to bowel part of problem 

      Youve done your best and got her to see specialists and have tests, Good luck 

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    • Posted

      She's been taking esomeprazole for the past year to help with indigestion and stomach pains, but now seems to have more pains lower down. I think she probably does have blood loss somewhere but doctors have never looked very deeply into it. I'm a bit disillusioned with them to be honest, and my daughter hates seeing doctors as she feels like they've fobbed her off so many times. Hopefully we'll get better results with the gastroenterologist. It would be lovely for her to be well enough to get back to school.
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    • Posted

      No worries, I don't think you meant it to sound like that but I went on automatic pilot defensive mode. Lol

      People do recover and I read somewhere that the younger a person is the more chance of getting better they have. I've had it for over 10 years and I've been virtually bed bound but I've found a homeopathic remedy that's really helping me and giving me hope. razz

       

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    • Posted

      I know what you mean about defensive mode - I get really cross with people who just dismiss it as if it's nothing and I don't even have it!!

      ​I'm so glad that you've found something that helps you, my daughter found homeopathic remedies worked to an extent. She's now seeing an aromatherapist who's helped her loads.

      ​I hope you continue to improve x

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    • Posted

      I use essential oils and herbs too. I've got a blue SAD light therapy box which helps. They give some energy as well as lifting the mood.

      It's great that your daughter is using complementary therapies; they've improved some of my symptems and I have great faith in them. smile

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    • Posted

      lol, can relate to that, l did same a few week ago on healthunlocked, a poster was just quoting from a book, which suggested it was all phycalogical, Must have been one of those day, l went off on one, really in response to the author, but the messenger poster took it as a personal attack, young woman, l being new on site and she being a long standing favourite l guess, it was like, well, lol now.  l think most of us including bb get it, after years of listening to cynics, including which is even worse, dr,s. who have often been proved wrong, they were with me for years, wrong diagnoses, misdiagnoses, phycalogical hypacondriac etc, all the time whilst your suffering physically, and worse mentally due to being fobbed  off, nothing much to them, but to patient a lifestyle disaster, and not acknowledged. Sorry to say there are people in society that if they cant see or feel it personally it doesnt exist, So we all relate to the auto pilot raa, grr lol.  
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    • Posted

      lol yes afterwards, at the time its `We think its phycalogical`=boom, even drs tread warily now, probably on gp records,`bit touchy part of the phycalogical problem she has`, warning signs needed lol.
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    • Posted

      Never bought into the stories of those who never complained, always had a smile, yes it affects us all at some time or another negatively, amazing really what we do experience and can adapt to and be posative and have a lol at times, but wont tell drs that,lol.  
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  • Posted

    Has she been checked for coeliac disease? I know someone who has this and a lot of the symptoms sound similar.
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    • Posted

      She's had a blood test for coeliac which came back negative although I've heard that a blood test isn't 100% accurate for diagnosing it.
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    • Posted

      Another thing that causes stomach problems is a bug that lives in your digestive system called helicobacter pylori. I had this at one point after being misdiagnosed with other things and it is easily treatable. Not sure if all her symptoms tie in but a possibility. Good luck with getting a diagnosis.
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    • Posted

      Thank you, I'll ask the gastroenterologist. I know that my dad had that when he was younger (he also had ME for a few years).
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