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Neurosarcoidosis: Yet Another ME mimic?

Discussion in 'Neurological/Neuro-sensory' started by JaimeS, Aug 17, 2015.

  1. JaimeS

    JaimeS Senior Member

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    So I don't even remember how I got there, but I stumbled across Wikipedia's page on Neurosarcoidosis. If you don't have heavy-duty neurological symptoms this may not ring any bells for you, but it certainly did for me:

    • Abnormalities of the cranial nerves
      • Involvement of the facial nerve, which may lead to reduced power on one or both sides of the face (65% resp 35% of all cranial nerve cases) reduction in visual perception due to optic nerve involvement
      • Rarer symptoms are:
        • double vision (oculomotor nerve, trochlear nerve or abducens nerve)
        • decreased sensation of the face (trigeminal nerve),
        • hearing loss
        • vertigo (vestibulocochlear nerve)
        • swallowing problems (glossopharyngeal nerve)
        • weakness of the shoulder muscles (accessory nerve)
        • weakness of the tongue (hypoglossal nerve).
    • Visual problems may also be the result of papilledema (swelling of the optic disc) due to obstruction by granulomas of the normal cerebrospinal fluid (CSF) circulation.[1]
    • Seizures (mostly of the tonic-clonic/"grand mal" type) are present in about 15%, and may be the presenting phenomenon in 10%.[1]
    • Meningitis (inflammation of the lining of the brain) occurs in 3-26% of cases. Symptoms may include headache and nuchal rigidity (being unable to bend the head forward). It may be acute or chronic.[1]
    • Accumulation of granulomas in particular areas of the brain can lead to abnormalities in the function of that area. If the granulomas are large, they can exert a mass effect and cause headache and increase the risk of seizures.
    • Obstruction of the flow of cerebrospinal fluid, too, can cause headaches, visual symptoms (as mentioned above) and other features of raised intracranial pressure and hydrocephalus[1]
    • Involvement of the spinal cord is rare, but can lead to abnormal sensation or weakness in one or more limbs, or cauda equina symptoms (incontinence to urine or stool, decreased sensation in the buttocks).[1]
    • Granulomas in the pituitary gland, leading to all the usual pituitary issues you'd expect
    • Psychiatric problems in 20% of cases
    • Peripheral neuropathy has been reported in up to 15% of cases
    • Occasionally:
      • Dyspnea
      • arthralgia
      • lupus pernio (red facial rash)
      • eye inflammation
      • liver or heart may become involved


    Of course, this can only be diagnosed on autopsy of the brain.

    I just think it's so interesting - I get to the point where I think I've seen every ME mimic there is and then I find a new one. This could also fit a few Lymies I think.

    All sarcoidosis is autoimmune; in this case, Infliximab is used to treat, a chimeric monoclonal antibody to TNF-alpha.

    Imagine my shock when I didn't see this one up on PR on a search except once, in a list with other illnesses. This could be a real missed diagnosis for some.

    -J
     
    Last edited: Aug 17, 2015
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  2. alex3619

    alex3619 Senior Member

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    Its usually called just sarcoidosis here. Its been discussed but maybe not in depth.
     
  3. JaimeS

    JaimeS Senior Member

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    @alex3619 - I'll check that! I had a sarcoidosis client when I was working in clinic, and she had connective tissue involvement in her lungs and sinuses; I guess that's the way I've always thought of it.
     
  4. JaimeS

    JaimeS Senior Member

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    This is the only quote I found that used the word 'sarcoidosis' except in this thread....
     
  5. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Hi @JaimeS
    There are tests for Sarcoidosis.(though they are far from perfect)
    I would guess what you were reading about it is just that there is no way to specifically confirm neurological involvement other than autopsy.

    usually a chest x-ray is the first step (Sarcoidosis apparently involves the lungs "most" of the time - no idea on actual percentages)
    Second step is ACE blood test (though they would have to have a high degree of suspicion to do this with a clear x-ray)
    and again apparently ACE is elevated "most" of the time in Sarcoidosis.
    So the testing is certainly far from sensitive, but it exists.

    I'm super familiar with this one as I have an autoimmune disease that is commonly linked to Sarcoidosis. I've had it for many years pre-ME, so I've had more than a few chest X-rays. all clear of course ;)

    I am interested that you posted something above about it being linked to Celiac. As I also have Celiac disease. It does make me wonder. though i am not sure there is any point in me having yet another Chest X-ray or ACE test.
     
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  6. JaimeS

    JaimeS Senior Member

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    They can test to see if you have sarcoidosis in general with relative surety, but since brain involvement in sarcoidosis is not typical, just because you have sarcoidosis does not mean you have neurosarcoidosis. And neurosarcoidosis can only be confirmed at autopsy or on biopsy...

    Although if you have a confirmed dx of sarcoidosis and you have ME/Lyme-like symptoms, it could be fair to say you *may* have neurosarcoidosis. I might be splitting hairs, but I don't like that no one is sure.

    They are definitely both conditions linked to autoimmunity (like everything of concern to us, it seems....)

    -J
     
  7. alex3619

    alex3619 Senior Member

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    I ran a Google site search and got ten pages of sarcoidosis cites in threads here, though there were many repeats so its not nearly that long in numbers of threads.
     
  8. JaimeS

    JaimeS Senior Member

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    I was using our search box. I got three threads. One of them was this one, and one of the others was something mentioned yesterday!
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    @Kyla did they test you for sarcoidosis b/c you had certain symptoms or mold/toxin exposure or more b/c of family history? Am just curious to see how it may or may not relate to my situation. TIA for your response!
     
  10. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Hi @Gingergrrl

    It's because I have an autoimmune condition called Chronic Erythema Nodosum. The most common underlying cause of the chronic form is Sarcoidosis. Because I had it recurring for 16 years without a diagnosed cause occasionally I would see a new doctor and they would decide it must be Sarcoidosis and do another chest X-ray. ;)
     
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  11. Violeta

    Violeta Senior Member

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    It seems it has something to do with calcium metabolism.

    http://rheumatology.oxfordjournals.org/content/39/7/707.full

    Calcium metabolism in sarcoidosis and its clinical implications

    And I had just found this because of what is being talked about in the endoplasmic reticulum thread.

    http://www.ncbi.nlm.nih.gov/pubmed/16163728

    The InsP3 receptor: its role in neuronal physiology and neurodegeneration.
    Banerjee S1, Hasan G.
    Author information

    Abstract
    The InsP3 receptor is a ligand-gated channel that releases Ca2+ from intracellular stores in a variety of cell types, including neurons.

    In other words, inositol based receptor has a great effect on Ca+ intracellular stores. I don't know if supplementing inositol can help the situation, but it's worth looking into.
     
    Last edited: Aug 21, 2015
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    All the usual culprits seem present when they mention probable causes like ebv, cmv, cpn, mycoplasma as initiating infections .

    I think its possible that many autoimmune diseases are deep tissue and intracellular infections, not floating around the blood stream making them hard to test for??
     
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  13. Violeta

    Violeta Senior Member

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    Yes, I think that because they are proteins they are in the endoplasmic reticulum.
    And because calcium is part of the endoplasmic reticulum process, and stored in the sarcoplasmic reticulum, the calcium gets disregulated.


    http://www.ncbi.nlm.nih.gov/pubmed/23284050
    How viruses use the endoplasmic reticulum for entry, replication, and assembly.
     
    Last edited: Aug 21, 2015
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @Kyla thank you for explaining that and I appreciate it.
     
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  15. Art Vandelay

    Art Vandelay Senior Member

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    The Marshall Protocol people definitely believe that sarcoidosis is caused by intracellular infections. Indeed, Marshall claims to have cured his own sarcoidosis with his protocol.
     
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  16. Kina

    Kina

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    I just searched with our Search box and got ten pages of results.

    Hint: When you do a search, untick the 'Search this forum only' box.
     
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  17. JaimeS

    JaimeS Senior Member

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    Ah ha! Thanks, Kina!

    -J
     
  18. dannybex

    dannybex Senior Member

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    The emphasis should be on 'claims'. The last I heard he's still taking abx, more than a ten years after he said his protocol is a one to two year process.
     
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