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can you touch your nose with your tongue?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Mar 12, 2013.

  1. Allyson

    Allyson *****

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    this Nov 2012 article has much more including on blue sclera and other eye issues
    One of the most comprehensive I have seen
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/
     
    Shell likes this.
  2. Allyson

    Allyson *****

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    Missing FRENULUM?

    In the last decade, attention has been posed on the absence of the lingual and inferior labial frenulum in EDSs [68]. Subsequent reports offered contrasting results [6972]. More recently, a functional origin for the apparent agenesis/absence of the lingual frenulum in JHS/EDS-HT has been emphasized. In fact, this feature is likely the results of multiple contributors, such as primitive (developmental) hypoplasia of the frenulum and uncoordinated tongue movements due to concomitant orofacial dyspraxia [73]. Although still unsupported by evidence-based investigations, oropharyngeal dysphagia seems common in JHS/EDS-HT and, in rare instances, may impede feeding with consequent excessive weight loss, exacerbation of fatigue, and, in children, failure to thrive.

    extracted form this Nov 2012 artcile which has a pic of a missing frenulum if you scroll down

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/

    frenulum /fren·u·lum/ (fren´u-lum) pl. fren´ula [L.] a small fold of integument or mucous membrane that limits the movements of an organ or part.
    So I think it implies if you can touch your nose with your tonngue you may have a missing the frenulum??
    I can't.... and mine is present....will check with brother who can do it - is is Gorlin's sign positive - to see if he has intact frenulum
     
    NK17 likes this.
  3. snowathlete

    snowathlete

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    nope, not even pushing my nose down with my finger at the same time. i am about as in-flexible as a piece of concrete too.
     
    Allyson likes this.
  4. Allyson

    Allyson *****

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    Thanks Snow, I am inflexible too but still fit the picture apparently

    Forgotten who ws asking but this short article has some useful pics - stretchy skin and Gorlin's sign illustrated - so syou see those who can do it find it quite natural
    Best,
    Ally

    http://morphopedics.wikidot.com/ehlers-danlos-syndrome
     
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  5. snowathlete

    snowathlete

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    great pics. i think i just pulled something trying some of those moves out.
     
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  6. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Nowhere close.
     
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  7. lastgasp

    lastgasp

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  8. jonnyboy

    jonnyboy

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    I can. None of my immediate family can thou.

    I was diagnosed with eds3 last october too.
     
    Allyson likes this.
  9. Allyson

    Allyson *****

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    Oh that is interesting thanks Johhny boy

    Yes only few in my family can but the fact that they can means the gene is there i think.
    I am seeing a genetics clinic soon so will havemore info then.

    Where did you get the diagnosis could I ask - many people have been contacting me looking for knowledgeable specialist referrals as EDS is often overlooked in diagnosis.

    Cheers,
    Ally
     
    VeganMonkey likes this.
  10. Gypsy

    Gypsy Senior Member

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    I can touch my tongue to my nose. In fact I just did it again to make sure I hadn't lost my (weird) ability to do so.I used to do it when I was a kid- it creeped people out! :)

    This is a very interesting thread, thanks for posting it. I am not really certain that I have other characteristics of EDS, but I will have to read further.

    Now, if you can touch your nose to your tongue, as they say, you've got a whole set of 'nother problems :)
     
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  11. Allyson

    Allyson *****

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    Hi there Gypsy - yes indeed - but some answers too

    there is more onthe topic at this link
    http://forums.phoenixrising.me/index.php?threads%2Fis-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351%2F

    here is the list of other symptoms in you or your family that may be indicative of EDS and if you have a few of them you may want to see a geneticist about it

    Symptom check list - you or close family members have any of these?

    migraines, allergies, hay fever, asthma, excema, varicose veins, postive gorlin's sign, IBS, gastric reflux, hernias, diverticulitis, bendy joints or hyperflexibility, soft skin, easy bruising and bleeding, thin translucent skin that you can see the viens through or unusual scarring esp on lower legs. Aneurysms too and I think mitral valve problems.
    There are more symptoms - mos ofverlap with ME
    we have a fb page for people who think they may haveit or who have now had confirmation id you woul dliek to join let me know and i will add you.
    ALl the best and thanks for the reply.

    Funny i have someon cone in to look after my cats and she has been saying things that make me think she might have it - sleeps better after time in pool, hate heat , etc etc - asked her if she coul do it - yep she could and family history of varicos eveins arthtritis etc AND she usef to faint all the time !!! - she thought there was nothing wrong with that lol she is now looing into it
    My specialist say sit has been wrongly called rare and thinks he is seeing "just the tip of the iceberg"
    food for thought....

    thanks inded for the reply - SO many people have cotacte me to say either they can do this oRO they are hyperflexible - thought you do not indeed need either to have EDS.
    cheers,
    Ally
     
  12. jonnyboy

    jonnyboy

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    Hi Allyson sorry for taking a few days to reply. I only look on here periodically.
    I'm based in the UK, and I got the EDS 3 diagnosis from Prof. Mathias at the National hospital of neurology in London. I finally got my GP to refer me there as my autonomic symptoms were getting worse. In fact it was only through google that I found the Prof. So I was only going there really about autonomic problems. He quite quickly diagnosed me with EDS3 though, based on taking a detailed medical history and asking me to do certain movements like touch nose with my tongue. Skin writing called dermagrahica rubis (i think thats the name) I also exhibited. The diagnosis did come as a shock to me, I had looked up EDS before, but its always the worst case they present on the internet. Very stretchy skin, frequent dislocations etc. none of which I had. I am flexible, but I was an elite sprinter when I was fit, so flexibility was to be expected.

    For anyone else reading this with autonomic probs in the UK. My GP only agreed to refer me after I had been to see the local ME clinic, who said i didn't have ME (as being tired/fatigued wasn't my main symptom), autonomic dysfunction was. Whether I do have ME or not I think is semantics. I def have autonomic dysfunction, and I didn't display the symptoms my ME clinic were looking for.

    In addition to Prof Mathias, I am also due to see Prof Grahame next month also at the same hospital for my EDS3. I believe the Profs work quite closely together. I was able to see the two Profs relatively quickly, but I am a private patient, an NHS referral was possible but it meant many months of waiting.
     
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  13. Allyson

    Allyson *****

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    hey sorry if i already replied Np but have you had a diagnosis ?

    the falling i have read can be due to poor proprioceptio i have heard; me i am clumsy ad hit wall but donn actually hit the groud too often cheers


    Ally
     
  14. Allyson

    Allyson *****

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    Oh yes Prof Grahame is one of the top experts - brilliant that you can see him

    see the link to a paper of his in my siganture below.

    sorry i overlooked this post so did not reply earlier

    Would loe to hear how you get on

    Yes it is often that way it seems - as it is with ME - docs who may not know amything about it just say you do not have it !

    even kids on fb who cna bend double backwards etc and takes the m 20 years to get a diagnosis

    So glad you found some good ones. Best of luck with it.


    ALLY
     
  15. NPDivi

    NPDivi

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    Hi Ally,
    Sorry for the slow reply, I haven't had much extra time to check out the forum lately. No, I don't have a dx. I wouldn't even know who to get one from! The medical community where I live is pretty conservative - if there isn't a lab test for a disease, it doesn't exist here.
     
    Allyson likes this.
  16. wastwater

    wastwater Senior Member

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    I can touch my nose with tongue and bottom lip
     
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  17. Allyson

    Allyson *****

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    Positive Grlin's signe that can be a sign of EDS @Wastewater- have you checked it out ?

    I cannot o it but my mother and sibling can and uncle and cousins too - so it is I the gene pool there

    do you have other EDS symptoms too ? reflux ? motion sickness? POTS? migraines, IBS etc...

    Ally
     
    Last edited: Apr 13, 2014
  18. Allyson

    Allyson *****

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    likewise sorry I missed your reply here NP

    to fnd a good doctor in USA or Australia for EDS or POTS try these links - British site coming soon

    USA

    Good USA doctors
    https://www.facebook.com/groups/1438285386415297/


    Australia

    Good Australian Docs

    https://www.facebook.com/groups/287952358017187/

    Ally
     
  19. wastwater

    wastwater Senior Member

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    Think I just have the tongue/lip bit. I do have a rare chromosome 6 condition,and noticed EDS mentioned there.
     
    Allyson likes this.
  20. wastwater

    wastwater Senior Member

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