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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 Jimmels,
    it's interestng that you can even do that - most people can't do that by a long shot.
    Ask around you relatives perhaps and see who else can do it
    Though I cannot I have heaps of relys who can - the genetics have not been worked out yet.
    Oh nd maybe look at the other thread so see if you have any other attributes/ history

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/
    cheers,
    Ally
     
  2. Allyson

    Allyson *****

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    H

    Hi Shell, nice to hear form you

    Well my doc says if a first degree family member can do it tht is stronly indicative - may be conclusive evidence.
    But the other things count too.
    Keep it in mind then - a lot is happening now with genetic reearch and it may not be long til they have a sequence worked out. I am seeing a geneticist soon.
    The translucent skin in mentioned in all the EDS sites - all their symtoms are so similar to ours it it eerie.
    There is not much medical stuff out there but a lot of Fb pages where patients are reporting
    tho the EDNF page is a good place for reliable info.
     
  3. Allyson

    Allyson *****

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    HI Ema,

    i dislike the term mild because I am really ill but have not joint hyermobility, and it trivializes my illness -
    immunodeficiney and other symptoms are all part of EDS as faras I can determinte -- ALL your connective tissue can be affected , including blood vessels , blood, lymph, gut, muscle faxcia and joints. Though i am not hypermobile I have migratory joint pains like most of us.
    There is also another type of EDS that is musculocontractural - where muscles are too tight I think.
     
  4. Ema

    Ema Senior Member

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    I just meant that my symptoms are mild compared to what others go through with EDS...not that it is a "mild" illness in general. I know of many people who suffer greatly.
     
    Allyson likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    I have a short tongue and couldnt even get close to doing that. At least one of my daughters thou can put her tongue right on the tip of her nose, as she's hyperflexible in several other ways too (able to meet diagnostic criteria) she'd get easily diagnosed with EDS if she went and saw someone over it.

    I do think there is a genetic link between EDS and ME/CFS so probably a EDS gene increases risk factor of us getting this. Maybe some here could start contacting EDS researchers and see if any of would be interested in trying to do a study on ME/CFS and EDS genes. I think we need to get researchers from other fields more interested in ME/CFS and its possible connection to their fields of medical conditions (we could then also use the funding from those other illnesses which probably get more funding then we do).
     
    Allyson likes this.
  6. Allyson

    Allyson *****

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    Yes i thnk if the diseases are the same illnesses along the spectrum or even related it is a good idea to combine resources Tania. Good suggestion thanks.
     
  7. Allyson

    Allyson *****

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    Thanks Sea, sounds like all the symptos i read onthe EDS fb pages sadly
    Have you done a Beighton's score? Seems like you would qualify for EDS 3
     
  8. Ocean

    Ocean Senior Member

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    I can't.
     
    Allyson likes this.
  9. Allyson

    Allyson *****

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    Yes I agree Tania, that is a good idea - if they are the same disease at different points along the spectrum why not combine for funding and research - so many of the issues on the EDS pages are the same as ours. Also the more people who get diagnosed the more hope we have of reasearch happening.
     
  10. Sea

    Sea Senior Member

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    Haha, I hate to admit it but you made me try that! Yes my tongue can reach my nose if I push my nose downwards a little.
     
    jimells and Allyson like this.
  11. Sea

    Sea Senior Member

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    Yes, I think I probably would qualify but accessing knowlegable specialists is very difficult, time consuming and expensive. It's on my list of important things to pursue but it's not at the top of the list.
     
    Allyson likes this.
  12. Allyson

    Allyson *****

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    QUite understand... as for expensive though here in Australia IMO we are lucky enough to have many wonderful docs in most the large teaching/university hospitals and treatment is free.

    You have the added bonus that they are the ones who will be counting us and doing research....and discussing us with colleagues and at cconferences here and overseas as well as writing journal articles on the condtion aand teaching new med students - the doctors of the future..
     
  13. valentinelynx

    valentinelynx Senior Member

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    Yes, I can touch my nose with my tongue and put my hands flat on the floor and bend thumbs back to my forearms and more. But, how does that explain why I suddenly got sick one day in March of 1993 at the age of 31 and never recovered? All of those things had been present since birth, and never caused me any problems. I'd think if I had immune system problems or cardiovascular problems before my illness onset I would have noticed, having been quite athletic in my youth and very active up to the time I became ill.
     
  14. Allyson

    Allyson *****

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    HI Val did nothing preceed the illness? air travel. giving up caffeine? extreme heat exposure?

    Do you have any of the following in the family - migraines, asthma, excema, allergies, hay fever, varicose viens, hernias, a faint ...ad see more on the full link in my sig below
     
  15. valentinelynx

    valentinelynx Senior Member

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    Tucson
  16. Allyson

    Allyson *****

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    OH, I thought you said on another thread you had severe allergies??? I may have you mixed up with someone else.
    I guess nothing else explains your illnes either though, does it...?

    However this was just posted on an EDS page

    quote
    just wanted to pop on and say Hi. I was finally diagnosied by an EDS specialist here in [Britain] on Wednesday. I am almost 45, mine really kicked in around 5yrs ago. .....
    unquote
     
  17. RosieBee

    RosieBee

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    Yes I can - Licking my nose like a cow used to be one of those annoying things I did as a kid to disgust adults. Don't tend to do it so much these days. Really flexible joints, bendy wrists, back etc. Definitely in the family. Both daughters are also very bendy. One of them was diagnosed with hypermobility recently at British School of Osteopathy - like me she has had ME for 15-20 years. My brother has had serious 'shallow joints' problem requiring extensive corrective surgery. I wasn't aware that there was much help on offer.
     
    Allyson likes this.
  18. Allyson

    Allyson *****

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    Hi Rosie, an thanks... well that sounds like full blown EDS 3 to me sadly - not much help yet but some and the more people who get diagnosed the more interest and help there will be.

    It is genetic so eppiegenetics may some day be able to help ....

    Heaps more info on this thread plus links to some useful EDS pages
    there are lots of EDS pages on FB which discuss those issues - they have all the joint issues plus the ME issues ....all adds up to the same disease along the spectrum as far as I can see.
    ( I am not hyperflexible but have joint pains - like a lot of us - and am diagnsed with EDS

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/
     
    RosieBee likes this.
  19. Allyson

    Allyson *****

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    HI Shell,
    thanks for the reply
    translucent skin sounds like a givaway for EDS 3 - do you have unusual scarring at all? I have cigarette ppaper scars on knees and shins.
    There are heaps of other symptoms that might help you work it out - most are mentioned in this thread
    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/
     
    Shell likes this.
  20. Shell

    Shell Senior Member

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    I have what my kids call "tiger belly" which are the wide and silvery stretch marks that have never faded; they just got added to with each pregnancy.
    I also have really rough knees. Not as bad as you see in EDS photos but still weird. Apart from flushing I also get random blotchy bright red rases on my legs and chest. Is this a possible EDS sign? It comes and goes but it does seem very odd.
     

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