Invest in ME Conference 12: First Class in Every Way
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Tests indicate more to my condition but nothing can be found - ideas?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Bunchy, Dec 17, 2016.

  1. Bunchy

    Bunchy Senior Member

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    Hi everybody,

    I have had some test results over the years that could indicate there is more going on with me than ME. In fact, although fatigue is a part of the picture, my symptoms are quite complex and wide ranging.

    I will post more about my illness (I could use some opinions and input!) after the holidays but I would like to know if the following test results that have shown abnormal or positive over the years mean anything to anyone. They don't to my doctors!

    They are as follows:

    Thoracic lesion in the spine on T8 (revealed on MRI scan)
    Liver granuloma (revealed on liver ultrasound)
    Intermittently high ESR (sed rate) - usually with my chronic "viral" or "immune" episodes.
    Positive ANA (but not Lupus)
    Positive Anti Smooth Muscle Antibody (but not Autoimmune Hepatitis)
    High positive Rheumatoid Factor (but no Arthritis symptoms except only very occasional and mild joint pain with the immune flares)
    Mildly elevated Calprotectin
    Negative for Lyme disease (multiple tests and two types of sensitive testing done)

    Would love to hear from anyone with any input!

    I'm struggling with trying to edit and add to this due to some glitch on the forum so I will just post this thread now and add more another time. Thanks for listening :)

    Love Bunchy x
     
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  2. Cohen2

    Cohen2 Senior Member

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    I think the three positive auto antibodies mean you've got some kind of autoimmune process. Im guessing you've seen a rheumatologist?Elevated Calprotectin probably means you have some bowel inflammation. Inflammatory bowel disease is a possibility but I think Calprotectin would be would be higher and you'd have other markers.

    I've also had mildly elevated Calprotectin of 70 with 50 being the upper limit of normal. The doctor said it was unlikely I had inflammatory bowel disease but would do colonoscopy of I wanted. I decided against it.
     
  3. kangaSue

    kangaSue Senior Member

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    Calprotectin levels in the 50-70 range indicate a low level of inflammation that is possibly chronic, something expected if you have any sort of GI dysmotility other than IBD which is more often around the 200+ mark.
     
  4. Cohen2

    Cohen2 Senior Member

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    Thanks. how would a specialist go about diagnosing the sort "GI dysmotility"? Colonoscopy was the only option given and his only suggestion was IBD. I also had a gastroscopy which showed mild oesophagitis. I can tell it's much worse now though as this was 6 years ago, my stomach issues haven't improved either.
     
  5. kangaSue

    kangaSue Senior Member

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    Ah, the $64,000 question. I just have gastroparesis (GP) and have been at it for 16 years with GI's and motility experts to get to the cause of it and still not a lot better off for it.Then there is the Immunologist, the Neurologist, the Endocrinologist, the Rheumatologist, oh, and the Psychologist just in case I was nuts and it's all in my head.

    It's all a process of elimination. My GP symptoms are pretty severe but my first Gastric Emptying Study showed an abnormal mild delay and an endoscopy only showed some slight gastritis although both were markedly different a couple of years back, some 13 years later. My colonoscopy was revealing in that it showed advanced bowel ischemia but that makes me the odd one out among the hundreds of GP patients I interact with in another forum (inspire.com) who mostly have normal results.

    A colonoscopy is still well worthwhile but a CT scan is probably the more helpful and can reveal structural abnormalities or signs of bowel wall thickening (or thinning when done by a skilled technician with a lot of experience). A doctor actually listening to your bowel sounds can help too, an abdominal bruit sound is indicative of a blood flow abnormality but not often listened for. Something I suggested to my G.P. to do after learning about it myself when for 13 years, no specialist thought to do it. That could have saved me years of grief as I did have one, leading to an eventual diagnosis of Non-occlusive Mesenteric Ischemia (bowel ischemia).

    You would think a colonoscopy would pick up the likes of Megacolon but I know personally of several cases were it was undetected with a colonoscopy and only discovered during exploratory laparoscopy.
     
    Last edited: Dec 22, 2016
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  6. Cohen2

    Cohen2 Senior Member

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    Thanks for the info. It might come in handy. What an ordeal to get to the bottom of thingfs! I don't have thousands to spend, I got sick at uni so never got to the earning money stage. I am hopefully seeing a rheumatologist soon so I'll get them to order a calprotectin test to see if the inflammation is still there. and go from there.
     
  7. kangaSue

    kangaSue Senior Member

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    No, I don't have thousands of dollars to waste either. Probably part of the reason why it's taking years to get to the bottom of it in negotiating wait lists from only relying on the public hospital system and/or bulk-billing specialists. Our public healthcare system works well, if you are a classic text book case. The rest of us can easily fall between the cracks if you're not one to make a fuss. I've since learned to make a fuss and that the more noise you make, the more attention will be payed to your case.

    I guess it depends on what symptoms you are having to determine whether or not a colonoscopy is the next step but after an endoscopy, the next usual step is to do a Barium Swallow with Small Bowel Follow Through. I have an IBD G.I. specialist advocating for me at the moment after I sought a second opinion from him about bowel ischemia and chronic inflammation in the hope that some of the IBD treatments might be beneficial and he was telling me that he would only consider IBD to be the issue if your calprotectin level is up around 200 or more.
     
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  8. kangaSue

    kangaSue Senior Member

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    @Bunchy With those antibodies, I would be looking to get further assessed by Dr Vincent's Neuroimmunology clinic at Oxford University Hospital.

    Lesions on the spine can happen with MS so you want to get connective tissue disorders ruled out too.
     
  9. Daffodil

    Daffodil Senior Member

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    @Bunchy don't say you are negative for Lyme unless you have had the LTT ELISPOT!
     
  10. Cohen2

    Cohen2 Senior Member

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    @kangaSue Yeah I know what you mean about making a fuss. I'm still no good at that and usually even play down my symptoms.

    The specialist at the time suggested colonoscopy and small bowel follow through x ray. Symptoms are mostly the same now but am no longer vomiting.
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    @kangaSue Do you know if Dr. Vincent's Clinic takes international blood samples (like people can do the Cell Trend tests from Germany internationally) or is she only taking samples from within the UK? I have tried to investigate this but unfortunately got nowhere!

    @Cohen2 Definitely do not play down your symptoms. I agree that sometimes making a fuss can backfire, but I would state them very factually, how much they are impacting your life, and do not minimize the severity of them.
     
  12. kangaSue

    kangaSue Senior Member

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    Yes they do. I had blood sent there to be tested for the a3 nicotonic AChR Ab (not Mayo for the full Autoimmune Autonomic Ganglionopathy antibody panel like the Neurologist led me to believe) as it's not a test done here in Australia.

    Mine was all organised through the Pathology Department of our main tertiary public hospital so I'm not sure what the procedure is to ship samples to them.
     
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  13. Bunchy

    Bunchy Senior Member

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    @kangaSue Can you explain more about the clinic in Oxford? I haven't heard of them so not sure what they do or what they test for. I was recently assessed by a rheumatologist and he tested for Lupus which was negative. I am not sure if he tested for connective tissue disorders but will try to find out. He wanted me to try a course of Prednisone to see if it helped my symptoms but I have been too scared of making things even worse in the long run to try!:eek:

    Thanks for everyone's input so far.

    Love Bunchy x
     
  14. kangaSue

    kangaSue Senior Member

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    I don't know a lot about it because I'm in the wrong neck of the woods (Australia) but I gather that the Neuroimmunology Clinic that you need is at the Churchill hospital which is a part of the Oxford University Hospital Trust.
    http://www.ouh.nhs.uk/immunology/neuroimmunology/default.aspx
     
  15. kangaSue

    kangaSue Senior Member

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    Was Lupus tested for with an ENA (Extractable Nuclear Anigen) antibody panel?
    This same panel is used as a means to differentiate between Lupus, Scleroderma, Sjogren's Syndrome and Mixed Connective Tissue Disease
    https://labtestsonline.org/understanding/analytes/ena-panel/tab/test/
     
  16. Bunchy

    Bunchy Senior Member

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    @kangaSue - thanks for the link but it looks like this is not a clinic for patients to attend, but more like a laboratory that offers specialist tests requested by someone's doctor/consultant.

    I am not sure if the consultants I have the choice of seeing next, Dr Amolak Bansal or Dr Abhijt Chaudhuri (still trying to figure out who would be best to see) would think any of these tests are relevant to my symptoms or not.

    Someone posted about Calprotectin levels above and, yes, I have levels in the 70's so likely not true inflammatory bowel disease though I have had episodes of bloody and painful diarrhoea which floors me for several days at a time on and off for several years now. This occurs about every six months or so.

    Love Bunchy
     
  17. Bunchy

    Bunchy Senior Member

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    Not sure as they don't specify on the results printout or letters here in the UK. I will try to find out tomorrow as it's very late here in the UK. Thanks so much for your efforts to help me! :hug:

    Love Bunchy x
     
  18. kangaSue

    kangaSue Senior Member

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    It's true inflammation all right but just low level inflammation, in which case your symptoms here could be from either Ischemic Colitis or you're the same as me and have Chronic Mesenteric Ischemia (CMI).

    Do you get gut pain or discomfort shortly after eating? That is the main symptom in CMI although about 30% of cases don't get pain with it and many cases, myself included, don't have any blood in the stool either. I only yesterday had a fecal calprotectin test done and don't have the results yet so I can't say whether or not mine is elevated just yet.

    Next time you're seeing a doctor, any one will do, have them listen to your bowel sounds to see if you have an epigastric bruit. I suggest getting a Doppler Ultrasound of the mesentery arteries to to see if you have any elevated blood flow velocities in case there are any occlusions affecting blood flow to your bowel (which can cause the bruit sound).
     
  19. redo

    redo Senior Member

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    I am considering getting tested. Do you know of a lab that's more reputable than others?
     
  20. rosamary

    rosamary Senior Member

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    If you have blood in your stools every so often and feel particularly unwell at that time you may be having a flare of IBD. Blood in your stools should be investigated thoroughly.

    Get a camera up your backside so a few biopsies can be taken.

    Things need to be ruled out.

    You may have more than one problem or it may be systemic.
     

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