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Help needed urgently

Posted , 2 users are following.

fiona22147
fiona22147

Ok, first time posting here my name is Fiona, I have ulcerative colitis and psorasis had them since child hood. Have had two children, three miscarriages. Three years ago my hip went numb then my knee, then my upper arm, all on the right hand side......now I have numbness in my right hand side of my tummy and buttock and a swollen tummy.....I am 45 have worked since I was 16.........two years ago thought I was going through the change went to drs bloods taken....no vitamin d or folic acid.....three month course of tablets, last March had a seizure.....taken to hospital...protein in urine....sent to first seizure clinic...showed lesions and inflammation of my brain....referred to neurologist......MS, vascuilitis or systemic lupus can't even spell the last word lol.....so far I have seen haemotologist....have cardiolipin cells in my blood, urologist....your bladder is retaining too much fluid.....neurosurgeon.....your t5,t6 and t7 are compressed let's do a further MRI on your spine, Opthamlogist.....think you may have a tumour in your eye......next week I go back to see haemotologist and urologist on Monday and Tuesday......my symptoms.......numbness, brain fog, itchy skin.....spots that appear and then leave marks over my skin....I had the butterfly rash about ten years ago but my dr put it down to me being away for a weekend and sleeping in a bothy, horse hair allergy allegedly, but I slept in a sleeping bag, it was like someone had burnt my face............three courses of antibiotics before it disappeared....very cold hands and feet....always......can't stand hot baths any more, can't tolerate....my head has raised plagues all the time....not like my psorasis...which was flaky skin.....tummy bloated for four weeks now.....three urine samples in five weeks, first one....come back in you have protein, but I was going on holiday so couldn't attend surgery as they phoned me on the Friday....went back in last Tuesday for a smear....tested my urine.....you have protein again, will send it to lab, phoned Friday, Monday and today......we have lost your sample.....come back in tomorrow....sorry for the rant....lastly, joints ache, muscles ache, weakness and have down days and up days......please help me.....Thanks xxxx

0 likes, 3 replies

3 Replies

  • TreatMeGently
    TreatMeGently fiona22147

    Posted

    Hi Fiona

    Have you ever been tested for Celiac Disease - or for anti-gliadin antibodies (showing possible gluten sensitivity) ?

    Brain fog, butterflly rash, bloating stomach - intestinal permeability causing joint pains elsewhere in the body.  I saw a you tube lecture / video from a top gastro doctor that the most common presentation of celaic is now Fibromyalgia or Chronic Fatigue.   Then if you throw in related conditions to celiac - such as Gluten Ataxia (causing brain lesion) and Demitis Herpetiformis (like psoraisis) - it really can mimic so many disease.  

    My Ankylosing Spondylitis involved skin issues and brain fog has become much less of a problem with diet changes. I am 48 now - had AS since 18.

  • TreatMeGently
    TreatMeGently fiona22147

    Posted

    Sorry one more thing... I have been reading a lot about FMT treatment for UC and for C Difficile for the last week.  Apparently it is showing a 90%+ success rate.

    The aim of FMT is to change make up of the gut bacteria - which causes a change to your immune response.   

    Not a nice subject for some - but could be a real lifeline for many!

    • fiona22147
      fiona22147 TreatMeGently

      Posted

      Never heard of it at haemotologist on Monday......I just know I'm not right.....friends have said Epstein Barr or fibro......very scared that's a year in limbo....two drs now have mentioned sle or vascuilitis....with ulcerative colitis I know what foods trigger an episode, I don't eat them.....it's not MS so just need to wait but thanks treatmegently please keep in touch.....just want answers 
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