Discussions By Condition: I cannot get a diagnosis.

gastro issues amongst others being fobbed off as ibs

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: cryptourniquet
  • March 9, 2008
  • 09:21 PM

i was recently 'diagnosed' with IBS (i say that because all my test results came back negative for everything else and as soon as they found out that i had a relative with it, they decided that was the problem) and i feel like i am continuously going downhill.

i'm a 20y/o female from and living in the uk. i caught both a chest and viral infection when i was 13 and reacted to the virus (docs didnt know what it was), leaving me out of school for 3 weeks. i thought i recovered, but since then i haven't been the same. i have been constantly tired all the time since the viral+chest infection and have been tested for glandular fever 5 times, all negative. i constantly feel like sleeping. my joints, especially my knees and hips ache all the time.

my gastro symptoms started in aug/sept 07, with not being able to go, then not being able to NOT go. i had incredible stomach and lower abdomen cramps, headaches, tiredness, neck pains, nausea, vomiting and everytime id vomit, even if id eaten hours before, it was not digested. i was constantly thirsty and didn't have any sort of fever. i visited my doc who tested me for hypothyroidism, coeliac, diabetes and a whole other manner of things. all came back ok, blood sugar fine, iron levels fine, blood count fine, blood pressure always about 120/70. so she diagnosed ibs. i have taken a whole manner of things (fybogel, mebeverine, peppermint) and none have worked really. my stomach cramps feel like the norovirus (had this two years ago and ended up in a+e).

my post is questioning the gastro symptoms, nausea and tiredness and aching. is there any other possible cause for all the gastro problems other than ibs?

yesterday and today, i have had the horrible lower abdomen and stomach cramps, diarrhoea, and a pain going all the way down my left leg.

just as a side, i have also got polycystic ovarian syndrome, benign paroxysmal positional vertigo and recurrent bouts of labyrinthitis.

i can answer any other questions regarding this or the other problems.

thanks.

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5 Replies:

  • I think you should look into being tested for porphyria. It may be part of your problem, though you could still have another illness (say an auto-immune disease with porphyria. http://www.wrongdiagnosis.com/p/porphyria/symptoms.htm http://www.nlm.nih.gov/medlineplus/porphyria.html You may not have all these symptoms.... List of symptoms of Porphyria:The list of signs and symptoms mentioned in various sources for Porphyria includes the 46 symptoms listed below: Urine color changesDarkened urineNerve complication symptomsChest painAbdominal painMuscle crampsMuscle weaknessHallucinationsSeizuresDepressionAnxietyParanoiaHigh blood pressureRapid pulseFeverSkin complication symptomsSkin blistersSkin itchingSkin swellingSun sensitivityPhotosensitivityParesthesiasHair growth abnormalitiesSkin pigment changesGastrointestinal upsetAbdominal painVomitingNauseaConstipationSkin symptomsNeurological symptomsBlistersItchy skinSkin swelling on exposure to lightChest painAbdominal painLimb painBack painMuscle numbnessVomitingConstipationPersonality changesMental disordersTinglingParalysisCrampingYou may be having problems with your electrolytes alsohttp://en.wikipedia.org/wiki/Electrolyte_disturbance http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/electrolyte_disorders.jsp Gastroparesis: see note below in redhttp://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/ i was recently 'diagnosed' with IBS (i say that because all my test results came back negative for everything else and as soon as they found out that i had a relative with it, they decided that was the problem) and i feel like i am continuously going downhill. i'm a 20y/o female from and living in the uk. i caught both a chest and viral infection when i was 13 and reacted to the virus (docs didnt know what it was), leaving me out of school for 3 weeks. i thought i recovered, but since then i haven't been the same. i have been constantly tired all the time since the viral+chest infection and have been tested for glandular fever 5 times, all negative. i constantly feel like sleeping. my joints, especially my knees and hips ache all the time. my gastro symptoms started in aug/sept 07, with not being able to go, then not being able to NOT go. i had incredible stomach and lower abdomen cramps, headaches, tiredness, neck pains, nausea, vomiting and everytime id vomit, This symptom is probably gastroparesis. even if id eaten hours before, it was not digested. i was constantly thirsty and didn't have any sort of fever. i visited my doc who tested me for hypothyroidism, coeliac, diabetes and a whole other manner of things. all came back ok, blood sugar fine, iron levels fine, blood count fine, blood pressure always about 120/70. so she diagnosed ibs. i have taken a whole manner of things (fybogel, mebeverine, peppermint) and none have worked really. my stomach cramps feel like the norovirus (had this two years ago and ended up in a+e). my post is questioning the gastro symptoms, nausea and tiredness and aching. is there any other possible cause for all the gastro problems other than ibs? yesterday and today, i have had the horrible lower abdomen and stomach cramps, diarrhoea, and a pain going all the way down my left leg. just as a side, i have also got polycystic ovarian syndrome, benign paroxysmal positional vertigo and recurrent bouts of labyrinthitis. i can answer any other questions regarding this or the other problems. thanks.
    TaylorDeelwithit 382 Replies Flag this Response
  • not sure about the porphyria, doesnt sound quite right however the gastroparesis sounds very familiar.. its something i constantly feel so its probable. il look into it with my doctor.. thank you for your reply :) I think you should look into being tested for porphyria. It may be part of your problem, though you could still have another illness (say an auto-immune disease with porphyria. http://www.wrongdiagnosis.com/p/porphyria/symptoms.htm http://www.nlm.nih.gov/medlineplus/porphyria.html You may not have all these symptoms.... List of symptoms of Porphyria:The list of signs and symptoms mentioned in various sources for Porphyria includes the 46 symptoms listed below: Urine color changesDarkened urineNerve complication symptomsChest painAbdominal painMuscle crampsMuscle weaknessHallucinationsSeizuresDepressionAnxietyParanoiaHigh blood pressureRapid pulseFeverSkin complication symptomsSkin blistersSkin itchingSkin swellingSun sensitivityPhotosensitivityParesthesiasHair growth abnormalitiesSkin pigment changesGastrointestinal upsetAbdominal painVomitingNauseaConstipationSkin symptomsNeurological symptomsBlistersItchy skinSkin swelling on exposure to lightChest painAbdominal painLimb painBack painMuscle numbnessVomitingConstipationPersonality changesMental disordersTinglingParalysisCrampingYou may be having problems with your electrolytes alsohttp://en.wikipedia.org/wiki/Electrolyte_disturbance http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/electrolyte_disorders.jsp Gastroparesis: see note below in redhttp://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/
    cryptourniquet 2 Replies Flag this Response
  • i was recently 'diagnosed' with IBS (i say that because all my test results came back negative for everything else and as soon as they found out that i had a relative with it, they decided that was the problem) and i feel like i am continuously going downhill. my gastro symptoms started in aug/sept 07, with not being able to go, then not being able to NOT go. i had incredible stomach and lower abdomen cramps, headaches, tiredness, neck pains, nausea, vomiting and everytime id vomit, even if id eaten hours before, it was not digested. i was constantly thirsty and didn't have any sort of fever. yesterday and today, i have had the horrible lower abdomen and stomach cramps, diarrhoea, and a pain going all the way down my left leg. just as a side, i have also got polycystic ovarian syndrome, benign paroxysmal positional vertigo and recurrent bouts of labyrinthitis. i can answer any other questions regarding this or the other problems. thanks.Since you mention having PCOS, I would definitely check into Cushings Disease and Thyroid Disease. A doctor will tell you "everything is normal," but I've found that this may not be necessarily true.A normal TSH, Thyroid Stimulating Hormone, is 0.5 - 2.0. Anything above 3.0 and below 0.5 is abnormal. High is hypothyroidism and low is hyperthyroidism. IBS is a symptom of thyroid disease.For more information on thyroid disease check out the following website:http://www.freewebs.com/thyroidThere's a link to a supportive forum on the first page.Good luck!
    Anonymous 42789 Replies Flag this Response
  • my post is questioning the gastro symptoms, nausea and tiredness and aching. is there any other possible cause for all the gastro problems other than ibs? Also seek out illnesses which have IBS as one of their symptoms. Chronic fatigue syndrome has IBS involved, tiredness and aching (and often thirst) and ones usually have a past history of a bad virus which left them not quite the same. If it is CFS, you will get worst symptoms after exertion. There is an autoimmune bowel disease which can involve aching and tiredness too but right now i cant think of the name.
    taniaaust1 2267 Replies Flag this Response
  • I think the autoimmune disease is Crohn's Disease, but also look into spondylarthropathies, like Behcet's Disease and Reiter Syndrome.
    aquila 1263 Replies Flag this Response
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