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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
came acros a mention of Joubert's Syndrome and noted this interesting info - not sure if it would ever relate to EDS


Ciliopathy from wikipedia
Research has revealed that a number of genetic disorders, not previously thought to be related, may indeed be related as to their root cause. Joubert syndrome is one such disease. It is a member of an emerging class of diseases called ciliopathies.

The underlying cause of the ciliopathies may be a dysfunctional molecular mechanism in the primary cilia structures of the cell, organelles which are present in many cellular types throughout the human body. The cilia defects adversely affect "numerous critical developmental signaling pathways" essential to cellular development and thus offer a plausible hypothesis for the often multi-symptom nature of a large set of syndromes and diseases.

Currently recognized ciliopathies include Joubert syndrome, primary ciliary dyskinesia (also known as Kartagener Syndrome), Bardet-Biedl syndrome, polycystic kidney disease and polycystic liver disease, nephronophthisis, Alstrom syndrome, Meckel-Gruber syndrome and some forms of retinal degeneration.[4]
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I just read a short Liz Taylor biog and almost every illness symptom she had fits with EDS -fainted , easy bruising , twisted colon, intestinal problems appendectomy, slipped and crushed several vertebrae, broke a bone in her foot, spinal fusion, accident prone, sleep problems, susceptible to frequent illnesses, sinus issues, back and neck pain, bronchitis, haemorroids, heat intolerance, wild fluctuations in BP, ? 2 miscarriages and she was even born with a spinal defect; she was a chain smoker (nicotine is a vasoconstrictor)

.Her insurance premiums for moves were throughtthe roof and she missed the fatal plane trip with Mike Todd due to illness. Last real movie was made at about age 56.

There are 2 pics of her showing her hypermobile elbow of course the biographer claims it was all psychosomatic !


A
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
Allyson said:
EDS - one of the most troubling symptoms Is POTS

has anyone had IV saline infusion for it? some say they help - plain or with added Mg and vitamins

http://potsgrrl.blogspot.com.au/2011/08/how-to-talk-to-your-doctor-about-iv.html?m=1


A
Click to expand...

Hi Allyson
I have been following this thread. Very interesting.
I have POTS and I can say although I don't get regular IV saline infusions (I would never be able to afford this at a naturopath)

I have had a few saline infusions when I've had a migraine and gone to the Emergency dept of the hospital.
They give me saline and have also given me a vitamin bag just for good measure. :)
I always feel very well for a day or two then it's back to my (not very well) normal. :(
I don't know what the long term implications would be having this done long term.
SD
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Snowdrop said:
Hi Allyson
I have been following this thread. Very interesting.
I have POTS and I can say although I don't get regular IV saline infusions (I would never be able to afford this at a naturopath)

I have had a few saline infusions when I've had a migraine and gone to the Emergency dept of the hospital.
They give me saline and have also given me a vitamin bag just for good measure. :)
I always feel very well for a day or two then it's back to my (not very well) normal. :(
I don't know what the long term implications would be having this done long term.
SD
Click to expand...

Many get regular saline infusions. The long term implications are simply that you have to keep doing them to have the benefit--they don't "cure" anything. :(

Sushi
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
I'm not well but being dependant on an IV forever more doesn't sound like a 'solution' to me either. ;)
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Snowdrop said:
Hi Allyson
I have been following this thread. Very interesting.
I have POTS and I can say although I don't get regular IV saline infusions (I would never be able to afford this at a naturopath)

I have had a few saline infusions when I've had a migraine and gone to the Emergency dept of the hospital.
They give me saline and have also given me a vitamin bag just for good measure. :)
I always feel very well for a day or two then it's back to my (not very well) normal. :(
I don't know what the long term implications would be having this done long term.
SD
Click to expand...


apparently they work better for some than for others - f they are heling you it may be that you have low blood volume Snowdrop - have you had that tested?


Ally
 
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Sorry i cannot copy the pic here but it is truly amazing - show how important and extensive connective tissue is in the body - if they could do this transplant with our stretchy veins it might be close to a cure.

it is pinned at the top of this fb page if anyone interested wants they can see it there
https://www.facebook.com/groups/455374384560623/


Ghost Heart ! This is a " Ghost Heart ". It has been decellularized, leaving only connective tissue. The organ can then be reseeded with a patients own cells to regenerate it so it can be transplanted without fear of tissue rejection. SHARE if you like this - Dr. Najeeb


or if you click on DrNajeeb above it takes you to his page where it is currently top posting - 13 January 2014

and check the size of those major blood vessels - if they stretch out there is a lot of room for blood pooling....
 
Last edited:
A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
EDS and genetics articles - thanks to Mark Martino, EDNF
From NIH http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome one can find labs doing which genetic testing (sequencing, deletion/duplication, prenatal, and/or carrier testing):

Gene Tests Arthrochalasia http://www.ncbi.nlm.nih.gov/.../lab/clinical_disease_id/2070

Gene Tests: Ehlers-Danlos Syndrome, Classic Type, COL1A1-Related http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319558

Gene Tests: Ehlers-Danlos Syndrome, Classic Type, COL5A1-Related http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319188

Gene Tests: Ehlers-Danlos Syndrome, Classic Type, COL5A2-Related http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319189

Gene Tests: Ehlers-Danlos Syndrome, Hypermobility Type http://www.ncbi.nlm.nih.gov/.../lab/clinical_disease_id/3263 (don't know what these are testing, actually — I assume the COL3A1 HM mutation, but I'm not sure)

Gene Tests: Ehlers-Danlos Syndrome, Kyphoscoliotic Form http://www.ncbi.nlm.nih.gov/.../lab/clinical_disease_id/3038

Gene Tests: Ehlers-Danlos Syndrome, Musculocontractural Type http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319374

Gene Tests: Ehlers-Danlos Syndrome Type IV http://www.ncbi.nlm.nih.gov/.../lab/clinical_disease_id/2067

Gene Tests: Ehlers-Danlos Syndrome Type VIIA http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319158

Gene Tests: Ehlers-Danlos Syndrome Type VIIB http://www.ncbi.nlm.nih.gov/.../clinical_disease_id/319159
 
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