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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

Messages
37
Location
Missouri
Interesting links and discussion. My son was seen by geneticist at Wash U and given dxnosis of EDS but her treatment was PT not IM b12. She also wanted to just watch him for a year. During that year we saw an Integrative Medicine dr who did the NutrEval which showed massive b vitamin deficiency which also causes connective tissue laxity and several other probs given as EDS. Its interesting that some docs are treating EDS with b12 but some are just giving the EDS label without sufficient treatment. Also frustrating that the "geneticist" at Wash U did not actual genetic tests while my Integrative Med dr ordered genetic tests that revealed genetic inability to utilise b vitamins.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
POTS tests at Mayo Clinic -POTS Is a mojor EDS symptom and thought to be the cause of the fatigue and muscle pain


The Mayo laboratory utilizes two test batteries, the autonomic reflex screen (ARS) and the reflex sympathetic dystrophy (RSD) screen. The former comprises the quantitative sudomotor axon reflex test (QSART), orthostatic blood pressure (BP) and heart rate (HR) responses to tilt, HR response to deep breathing, the Valsalva ratio, and beat-to-beat BP responses to the Valsalva maneuver, tilt, and deep breathing. The RSD screen comprises the recording of... skin temperature, resting sweat output, and QSART distributions bilaterally.

Quantitative Sensory Testing (QST) is a valuable method for diagnosing peripheral nervous system disorders, including chronic pain and pain related to various diseases, such as Diabetes and CRPS. QST essentially determines the sensation and pain thresholds for cold and warm temperatures, and the vibration sensation threshold by stimulating the skin and comparing the results to normative values built in the software. When the stimulus activates stimuli-specific receptors; the nerve fibers that innervate the receptors communicate the stimuli's message to the central nervous system, where feeling occurs. http://www.medoc-web.com/about-us/technology/technique
 
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Sushi

Moderation Resource Albuquerque
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19,935
Location
Albuquerque
These are tests of the autonomic nervous system--not specifically of POTS.

In my understanding, POTS or Dysautonomia related to EDS would not be coming from the autonomic nervous system but from collagen dysfunction.

Sushi
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
These are tests of the autonomic nervous system--not specifically of POTS.

In my understanding, POTS or Dysautonomia related to EDS would not be coming from the autonomic nervous system but from collagen dysfunction.

Sushi

could you explain how that difference works please Sushi?

Allly
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
In my understanding, POTS or Dysautonomia related to EDS would not be coming from the autonomic nervous system but from collagen dysfunction.

Sushi

could you explain how that difference works please Sushi?
Allly

There are many causes (known and unknown) for dysautonomia. There are brain connections, there are pathogen connections (killing pathogens has resolved dysautonomia for some here), there are connections with EDS (as a predisposing factor) but the most seems to be known about the connections with the autonomic nervous system and the brain.

There is published evidence (no time to look for links) that peripheral norepinephrine receptors are damaged in a % of patients--this is probably why norepinephrine re-uptake inhibitors work for some. There are other studies showing other autonomic nervous system dysfunctions (vagus nerve dysfunction, etc).

For some the low blood volume often seen in dysautonomia patients is coming from diabetes insipidus:

http://forums.phoenixrising.me/inde...partial-diabetes-insipidus.15362/#post-249075

The diabetes insipidus in ME/CFS is usually found to be central diabetes insipidus, due to low secretion of antidiuretic hormone (vasopressin). According to my hypothesis, this is due to glutathione depletion in the hypothalamus and pituitary. Some people have been helped by taking desmopressin, which is a synthetic form of vasopressin, available orally or as a nose spray. However, the sodium level in the blood can go off-normal on this treatment, and needs to be monitored.

Best regards,

Rich

On the other hand, for those with EDS, collagen dysfunction can be related to some aspects (but not all) of dysautonomia, in some patients. Many dysautonomia patients do not have EDS (and yes, they have been tested). Therefore, their dysautonomia is coming from one of the sources mentioned above, or some other source.

The tests mentioned in post #1045 are measuring various aspects of dysautonomia in general--not specifically POTS or symptoms related to EDS.

Best,
Sushi
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
. Many dysautonomia patients do not have EDS (and yes, they have been tested).

Best,
Sushi

thanks Sushi - I strongly disagee with that statement above though - most people with dysautonomia still do not even know that they have dysautonomia though it seems as so few people have been tested for it - and most doctors do not even know what it is yet sadly.

Best,

Ally
 

Sushi

Moderation Resource Albuquerque
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19,935
Location
Albuquerque
thanks Sushi - I strongly disagee with that statement above though - most people with dysautonomia still do not even know that they have dysautonomia though it seems as so few people have been tested for it - and most doctors do not even know what it is yet sadly.

Best,

Ally

Depends on what country you are in.

Sushi
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Depends on what country you are in.

Sushi

again I disagree alas Sushi!
I think most docs everywhere know very little about dysaoutonomia yet - I see people for all aroud the world on facebook being misdiagnosed or dismissed or mentioning docs who know nothing about it yet - fair enough it is falrly recent research and they cannot keep upwith everything in all fields - same for EDS - a (very hypermobile) woman was told she could not have it by a doctor in the USA the other day as she did not have blue eyes and blonde hair ! total rubbish!

I think this shortcut should work
https://www.facebook.com/download/460367147422964/Autonomic Dysfunction CME with Presenter Notes.ppt
 

Sushi

Moderation Resource Albuquerque
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Location
Albuquerque
@Allyson

Sorry, your link doesn't work.

Guess I've been lucky as all the docs I've encountered knew about dysautonomia and had at least a general idea on how to treat it--even Emergency Room doctors.

Sushi

P.S. I've sent you some Conversations--please have a look.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
@Allyson

Sorry, your link doesn't work.

Guess I've been lucky as all the docs I've encountered knew about dysautonomia and had at least a general idea on how to treat it--even Emergency Room doctors.

Sushi

P.S. I've sent you some Conversations--please have a look.

yes you have - in that lecture slide show - which is very good - she mentions exactly that - that Dysautoomia is often not diagnosed

also 3 page on the link between Dysautonomia and EDS in there..

Ally