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can you touch your nose with your tongue?

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
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
 

snowathlete

Senior Member
Messages
5,374
Location
UK
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

Senior Member
Messages
1,684
Location
Australia, Melbourne
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.


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
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I can. None of my immediate family can thou.

I was diagnosed with eds3 last october too.

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
 

Gypsy

Senior Member
Messages
123
Location
USA
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 :)
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
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
 
Messages
41
Location
Kent, UK
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

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.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
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:


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
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
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.

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
 
Messages
7
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

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

Senior Member
Messages
1,684
Location
Australia, Melbourne
I can touch my nose with tongue and bottom lip
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:

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
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.

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
 

wastwater

Senior Member
Messages
1,270
Location
uk
Think I just have the tongue/lip bit. I do have a rare chromosome 6 condition,and noticed EDS mentioned there.