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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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    HI I am interested to know how many people on this site - or a first degree family member of theirs - can touch their nose with their tongue - please.

    Know as Gorlin's sign in medical parlance, the ablility to touch your nose with your tongue may be an indicator of a connective tissue disorder ... such as EDS type 3

    If there are enough positive replies i will start a poll

    Many thanks

    (I cannot but my mother and brother can - as canmum's father and brother and many of their offspring.... so it is in the genes)


    Many thanks advance for any replies
    taniaaust1 likes this.
  2. Sea

    Sea Senior Member

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    I can't and neither can my parents
    Allyson likes this.
  3. Lala

    Lala Senior Member

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    nor me
    Allyson likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    2 things come to mind, gene simmons from KISS but i think he can touch his inner ear with his tongue.

    the other is my wife and her 2 sister, they can actually pick booga's if they wanted too, its their drunkin party trick, My wife complains about sore hips and can sort of partially dislocate her hips and then puts it back in and this relieves the discomfort she gets send shivers up my spine when she does that like chalk squeeking on a blackboard type of feeling arrgghh, her sister always seems to a knee issues etc. I wouldnt say they have eds effecting blood vessels causing pots/oi though.

    For me i can only barely lick my lips after eating bbq pork ribs but my party drink is putting my whole mouth around the top of a beer glass and drinking it, my goodness havent done that in awhile lol.

    Interesting peice of trivia ,
    cheers!!!
    beaverfury, dannybex, Allyson and 3 others like this.
  5. maryb

    maryb iherb code TAK122

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    [quote="heapsreal
    For me i can only barely lick my lips after eating bbq pork ribs but my party drink is putting my whole mouth around the top of a beer glass and drinking it, my goodness havent done that in awhile lol. cheers!!![/quote]

    I'd like to see that!!

    and no can't get anywhere near my nose. with my tongue.
  6. NPDivi

    NPDivi

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    I can. In fact, at nearly 50 years old I still score an easy 9 on the Beighton Hypermobility measure. My hips pop. My sternum dislocates if I laugh too hard. I can dislocate my thumbs at will. I have had varicose veins since age 16... I've got it all going on hypermobility-wise.

    My father, younger brother and my sons have obvious Marfan habitus. My son younger son has many hypermobility signs, as did my father and, from what I'm told, his mother.

    I also fall down a lot. It's pretty embarrassing :oops:
    Allyson likes this.
  7. SickOfSickness

    SickOfSickness Senior Member

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    I can't but I think I had some hypermobility signs before Fibro.

    I know someone who can touch with tongue who is apparently healthy physically (but has ADHD which I think is related to ME/CFS).
    Allyson likes this.
  8. golden

    golden Senior Member

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    i can't and it hurts my tongue and face muscles when i try.
    rosie26, snowathlete and Allyson like this.
  9. Sea

    Sea Senior Member

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    As for other hypermobility signs I could at 47 still place my palms flat on the floor while bending over with legs straight. Sadly spine osteoarthritis and degenerative discs have reduced that flexibility somewhat but now at 49 I can still touch my toes.

    I've always had issues with my shoulders which partially dislocate if I lean on a wall, TMJ, fingers and elbows that lock. 2 of my girls have knees that dislocate and spine and pelvis instability issues.
    Allyson likes this.
  10. Allyson

    Allyson *****

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    HI Heaps thanks, it is NOT trivia though - it is used in medical diagnosis of EDS asit is not normal but a sign of connective tissue disorder

    First degree relative means mother faterh brother sister son or daughter
    but many of my cousins etc can do it too.
    Your wife mihgt want to start looink o the EDS fb page where lots of people discuss those same issues as well as nearly all our ME symptoms. remeber many, many people mask EDS symptoms with caffeine - what happens when you/they stop all caffeine for 2 weeks?
    cheers,
    ALly
  11. Allyson

    Allyson *****

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    HI sounds like fullon EDS 3 unnfortunatley - i fall over a lot too.
    My grandfather and brother have Marfan habitus too
    HEaps of info starting to come onto net now about it esp if you search EDS on FB or rather spell it out Ehlers-Danlos

    the more people who get diagnosed the better - some docs still think it is rare but when they s a lot fo eole with it then they will start to do research- ep docs at teaching hopiitals

    My doc sid he used to be sceptical- then he saw so many people saying he same thing that he took it seriously.... not he is very iterested and doing research i it and going to conferences on EDS.
    He also measured BP correctly to catch a postural drop which almost no-one does that i have seen
    I had " cfs" symptoms for 10 years before i guessed what it was ; took me another 10 years to get diagnosed ( actualy i left it for years as I heard wronlgy that there was no cure or treatment)- then i started hearing about OI/POts and it took another 2 years to realise I had that and another year to get a diagnosis of that an EDS- so we need to be proactive to get help and interest and research happening.

    cheers,
    Ally
    NPDivi likes this.
  12. NPDivi

    NPDivi

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    Hi Ally,

    I agree that the more people diagnosed the better, but I'm wondering what, if any benefit you've gotten from finally getting a diagnosis? As I understand it there are few treatments for EDS. Have you found any help since your diagnosis?
    Allyson likes this.
  13. Ema

    Ema Senior Member

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    How does caffeine help with EDS?

    I have been diagnosed with EDS though it must be very mild. I cannot touch my nose with my tongue, however.

    Ema
    Allyson likes this.
  14. Allyson

    Allyson *****

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    NO
    No Emma i meant people use caffeine- esp coffee and coke - to mask the symptoms, so if they have low energy they drink cofee or strong tea or coke - all day long in order to stay up and function
    Caffeine is a stimulant; it is also a vasoconstrictor so will narrow bloood vessels which is why dark chocolate helps some of us...not recommencing it though.
  15. Allyson

    Allyson *****

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    d what i meant was if you do htis and then stop all caffeine intake for 2 weeks you may find you collapse as I did when i gave up drinking espresso coffee all day.

    why do you say mild EDS? not sure there is sucha thing; you don 'tneed to be gorlins sighn positive and youdon't need to be hypermobile.... and you can still be very ill with not obvious ( to an onlooker) symptoms.
  16. Allyson

    Allyson *****

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    Hi NP,

    Knowing to stay cool really helpedin the recent heat wave and putting a cold pack on the abdo help too
    Seeing how the symptoms are all logical rather than random helps a lot and helps you plan things - on the old pacing principle

    licorice root boosts blood volume as does VIt b 12 injections and oestorgen for thaos it suits

    Compression clothing helps - esp to the abdo time in cool water for the same reason -

    there are more in the thread on EDS -
    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/

    but the main thing i think is if we know what to research that is the major step inthe right direction for researchers
    and may lead to more hlpe ( eg comression clothing that keeps you cool as well may come from NASA work into astornoaut suits - we may all function better in the right design of a superman costume.
    Also if they are the ame thing and we pool resources and research that is a good idea too

    Finally - doctors take EDS very seriously and rightly so; it is a major illness and totally disabling
  17. Ema

    Ema Senior Member

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    I was diagnosed with EDS3 based on a high Beighton score, hypermobility and soft, fragile skin. I also have issues with low blood pressure and volume.

    I say mild because my joints are flexible but mostly stable especially if I stay in good shape (tough with ME/CFS!).

    However, I also have adrenal insufficiency and primary immunodeficiency. Those have been so overwhelming in terms of symptoms and treatment that I haven't done much to investigate the EDS. I'm not sure what else that diagnosis would add to my treatment honestly.

    Ema
    Allyson likes this.
  18. NPDivi

    NPDivi

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    Thanks, Ally. This is great info. Interestingly, I've been doing most of these things for most of my life, just intuitively because they make me feel better! I haven't tried the cold packs, though - I will in the future.

    I did read through the EDS thread as well as some other EDS sites and Dr Driscoll's site. It has all been very helpful.
    I'm a newly certified nurse practitioner (hence the "NP") and I'm now trying to figure out how to work all of this in to my professional life.
    Allyson likes this.
  19. Shell

    Shell Senior Member

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    I can't though I do have transluscent skin (which my sister used to mock me about) I also have some weird pulse pressure things going on making me wonder abut EDS IV.
    Two of my daughters can touch their nose with their tongue.
    One of my sons has very white transluscent skin.

    I doubt I'll ever know whether EDS is at play, but it's something I wonder about.
    Allyson likes this.
  20. jimells

    jimells Senior Member

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    The first medical person to take my illness seriously and treat me like a human being is a FNP. I first went to her because she had diagnosed a friend's daughter with POTS, which I knew I had. How is it that NPs know about ME/CFS and POTS while 'regular' doctors continue to deny these illnesses even exist?

    I can only touch my nose with my tongue if I push on both with my fingers, but I don't think that is what Allyson is looking for!
    Shell and Allyson like this.

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