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pectus excavatum

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Mya Symons, Jun 8, 2013.

  1. Mya Symons

    Mya Symons Mya Symons

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    My son had a complete physical recently and was told he has a concave chest (pectus excavatum).
    http://en.wikipedia.org/wiki/Pectus_excavatum. I never knew this was a problem or a medical condition. Apparently, if it is severe enough, it can cause Mitral Valve prolapse or completely crush and stop a persons heart.
    It seems like many of the symptoms of Pectus Excavatum overlap with Chronic Fatigue Syndrome. However, now that I know this is abnormal, I've looked at the area on his chest up close and it is barely noticeable. This is probably why this is the first we've heard of it (he's 18). He was also told he had a heart murmur. Thus, now I'm thinking he may not have FMS or CFS. This may have been the issue the whole time. It is correctable with surgery. He is going in for an EKG in a few days.

    They first diagnosed my uncle with Mitral Valve Prolapse when he turned 40. I wonder if this was the cause and it is a common congenital defect in my family.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is also associated with Ehlers-Danlos Syndrome and Marfan syndrome, and if it is barely detectable, I would not worry about it. I have it very mildly too.

    Sushi
    Allyson likes this.
  3. Mya Symons

    Mya Symons Mya Symons

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    I think I will try not to worry about it and just wait for the EKG.
    Allyson likes this.
  4. Allyson

    Allyson *****

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    yes Mya,

    as Sushi rightly say pectus excavatum IS a symptom associated with EDS as is a hart murmur- but that (Ehler- Danlos) is a genetic condition and the latest info from EDS foundation (EDNF) is that anyone with ANY type of EDS should now have a cardiac ultrasound to check the aortic arch which can be either weakened or malformed - not sure which now.

    So you may want ot have your son checked out for EDS which can have invisible symptoms too. inludig deilitaing "fatigue". It is often not picked up until later in life and symptoms can be insidious and are often overlooked even by doctors a many are uniformed aobut it or think it is rare so cdo not diagnose it.

    I was ordered a cardiac utrasound for EDS even before my diagnosis after the genetics clinic asked me a few questions on the phone about my sympotm and family history (which is very important in making the diagnosis) - and none of us are even hypermobile.

    Mine was OK but they will re- do it in about 5 years they said.

    Good luck,
    Ally
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have regular ultra sounds too--just had one--always fine except for mild MVP.

    Sushi
    Allyson likes this.
  6. Mya Symons

    Mya Symons Mya Symons

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    I know someone who has Ehler-Danlos syndrome and fibromyalgia. Their bones slip out of the socket at the joints all the time. He did have one incident where the wind was blowing (we live in Laramie), it slammed the car trunk door hard down on his knee, and it briefly came out of the socket. But, he has not had any more incidents since.
    Allyson likes this.
  7. Allyson

    Allyson *****

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    Ow - that has gotta hurt Mya!

    But not every one with EDS has flexible joints - often docs only look for tha t- fa ta ll - so the diagnosis can be missed if you do NOT have flexible joints and other obvious physical symptoms. It includes POTs?OI as common symptoms and refux, IBS, arthritis and joint pain and lots of other symptoms - anything that connective tissue makes or affects.

    So yu nee d to see someone who really know about it for an accurate diagnosis.

    Genetic testing for most types of EDS should be here in 2- 3 years though my geneticist tells me.

    CHeers
    Ally
  8. Asklipia

    Asklipia Senior Member

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    Pectus excavatum : this is a sign of something wrong in the lymphatic system. If you check the videos of Dr Perrin you will understand why, and how it is linked to CFS.
    and others which follow.
    As well as another video on this website :
    http://www.forme-cfs.co.uk/perrin_technique.html

    The good news is, there is a way out of this, and fairly fast if your son is young.
    Lots of good wishes,
    Asklipia
    :devil: FFP :devil:
  9. Allyson

    Allyson *****

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    OHthanks but I read Dr Perrins book on osteopathy - the Perrin techinque where he claims he can use Osteo to "CURE " cfs !

    Never a good claim I am afraid - why arent we all cured then?


    A
  10. Asklipia

    Asklipia Senior Member

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    Allyson
    I suppose we are not all cured because we keep doing something that made us sick in the first place. Until we understand what it is, and stop doing it, we become sick again.

    The alternative is : we are doomed from the start, are genes are wrong, and God who is supposed to have fashioned us in His image, had made a mistake in our case. And our genes are unchangeable.
    Well, this is not the alternative that appeals to me.
  11. Allyson

    Allyson *****

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    Hi Aslcipia - no that is not what i meant - i want a cure too

    What i meant was that i read a book by Dr PErrin called the Perrin techinque i think

    and he claimed in it as a veery rough paraphrase that "cfs" was caused by osteological defetx int he spine

    ANt that he could treatt it and thus cure the disease of "cfs"

    I found this to be simpistic,unverified and also I am a fradi a little cruel and deceptive.

    I want a cure a smucha s the next person but if his calim were true then i think we would have lot of poel no who would have ahd ther traatment ad would be cured - like coeliacs are "cured" by a gluten free diet for life for example, or TB is usually cured by antibiotics.

    I find it simplistic at best to even say he has found the cause of the disease "cfs"

    As ans aside,

    I do find gentle massage helpful for sympotm mamagemnet but Osteo is ot very helpful for me - too rough.
    Though i have not treid his specific tehnique..


    Hope this clarifies things - IF the cause is genetic then our main hope as far as i can see is in epigentics and gene based therapy.

    cheers

    Ally
  12. Mya Symons

    Mya Symons Mya Symons

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    I know my son does not have Marfran syndrome. Both my son and I have a mild case of scoliosis. However, he is 5'5' and does not have long limbs. We come from a long line of short people. There could be something wrong with the lymphatic system or pituitary. It could be something that runs in out family. When my dad started High School he was 4'11''. That's pretty small. But we are also part Native American and where I come from, most of the Native Americans are small.
  13. caledonia

    caledonia

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    Pectus Excavatum is a birth defect caused by MTHFR/methylation cycle mutations. Of course, you can't fix a structural defect by taking supplements, so if surgery can correct it, that would be the thing to do. Then you might want to get 23andme testing for your son so you know what his SNPs are.
  14. Allyson

    Allyson *****

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    HI Mia,


    I am no expert but i have come cross a contditon called OI - I think it stands for ?Osteogensis Imperfecta or similar.
    I is in my thread here in one of the later articles abstracts- about page 40 ish.

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

    It results in short stature and limbs in some and is connected with EDS I think..

    Scoliosis - the geneticist examined me for and it that can DEFINITELY be a symptom of EDS - (possibly of other things too - I do not know so you may want to check the ist of possibe symptom early inthat thread - WIki is not up to date on these which i got from my specialist).

    I understand that in EDS scoliosis can be due to the defective ligaments either side not pulling the spinie into proper alignment.

    ALl the best,

    Allt
  15. Allyson

    Allyson *****

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    You can also get genetic testing done as part of the health system for many conditions now - I had a genetest to rule out coeliac for example at a mojor hopispial - coeliac clinic at the Royal Melbourne Hospital.


    cheers
    A
  16. Allyson

    Allyson *****

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    Mya thought of you when i saw this

    Posterior spinal fusion for scoliosis in ehlers-danlos syndrome, kyphoscoliosis type.

    The Ehlers-Danlos syndromes comprise a clinically and genetically heterogeneous group of heritable connective tissue disorders...


    Ally
  17. Mya Symons

    Mya Symons Mya Symons

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    Thanks for the information. I was looking at pictures on the internet of different types of scoliosis. I think kyphosis describes my son and I. In both of us it is up high before the neck. I tried to copy and paste a link with no luck. What is interesting is I work with someone who does massage therapy for people with CFS and FMS. He keeps telling me I need a massage to clear and detox the fluids of the spinal cord once a week. I thought this was a strange thing to say, but now I am wondering if he is right.
    Allyson likes this.
  18. Allyson

    Allyson *****

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    Hi Mia Interesting and i am glad you are finding some answers.

    Personally i find massage - asl long as t is very light - very helpful
    I usually feel better for a week or more once i recver form the first day
    Not sure what the reasons for this are but i knwo it helps a lot of us

    Theories i have heard are that as our capillaries are weak (CTD) circulation is poor so fluid pools in the lymph system and massage returns it to the venousblood supply - thus boosting blood volume.
    This is the same possible reaon that being in deep water -as long asi tis not too hot also helps us like a warm bath.
    Another possiblity is that our muscle fascia (which is also connective tissue) is too tight and the massage relaxes it somewhat.

    I see scoliosis mentioned on the EDS chat pages a lot - with joint clicking and many other things- as it is connective tissue it ffects so amny things in our body.

    I wil keep an eye out for any uesful info and now on Kyphosis for you too.

    All the best,

    Ally
  19. Mya Symons

    Mya Symons Mya Symons

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    Thanks!
    Allyson likes this.
  20. Allyson

    Allyson *****

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    Hi Mya,

    Someone on an EDS site just confirmed for me that her speicalist told her that her kyphosis WAS a defininte symptom of EDS

    Also there is a type of Ehlers-Danlos Syndrome called Kyphoscoliotic Type EDS - or was - not sure it it has been re-named in the new classification system.

    All the best,

    Ally

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