Re: Marti/Ehlers-Danlos Syndrome - EDS was: Workup for POTS and/or Orthostatic Intolerance

[Guest guest]

Also, Marti, I think Ehlers-Danos syndrome would explain low grade infections.

So much of the immune system is in the stomach. If there are problems there,

then there is your connection, I believe. I've been looking it up and I

definitely have it. I bruise easily, was called a " rubber baby " as a baby, have

had fibromyalgia most of my life, etc and have not recovered well from injuries.

When i was 21 I had something called a snapping psoas and had to have two

surgeries. I can do stretches, most people can't- especially in the places I

have the most pain - my hips, back, etc.

Again- which kinds of docs diagnose this, and from what you know, what are the

" natural " forms of treatment which I can try as a first defense?

Thank you!

 

 

[Guest guest]

Hi ,

Here is the link to the original post:

/message/134778

Very interesting to consider your thoughts on the immune dysfunction. I have

had other responses to my post on another board who DID feel that immune

dysfunction was a more closely related disorder - possibly connected. So, I

don't know where I stand on that yet - open to it going either way. In regards

to collagen and gut - my thoughts were that the collagen altered mechanical

function not chemical function but I could be wrong!

The fibro that you speak of may not be fibro but instead myofascial pain

syndrome. And there are different ways to get relief (not Lyrica, Cymbalta or

Neurontin). I don't know much about this yet as I haven't gone for my PT yet.

From your description of being a rubber baby - that sounds like Hypermobile EDS

or HEDS previously known as Type III (and previously known as BENIGN Joint

Hypermobility Syndrome) but nothing benign about it.

The best doc to diagnose this would be an Adult Geneticist, possibly as part of

a teaching hospital who has experience with Connective Tissue Disorders of which

EDS and its types are just one kind. The next best would be a rheumy but not

many people have had luck with them. ANY doc can diagnose if they have seen it

before. My EP diagnosed me as people with EDS have POTS so he has seen it a

lot. You should be evaluated by a cardiologist for the vascular issues that

come with vascular EDS even if you are a different type.

The top docs (there are about 10 in the US) are Dr. Francomano in

Baltimore, Dr. Brad Tinkle (in Cinncinnati but moving to Chicago soon), I think

Dr. Levy.

As far as I have read - the past 3 months - collagen supplements do not help.

The body produces some good collagen and some faulty collagen and ingesting good

collagen does not seem to integrate into the body's tissues.

There is research regarding the vascular type that a particular medication helps

the body make more good collagen so it is not a cure but would be a

preventative. Still early days in the research of this and certainly not

available to take yet. This would not help the other types much because the

medication helps body to create that particular kind of collagen. HEDS is a

fault in a different kind of collagen. And Classical EDS is yet another type of

faulty collagen.

The best defense for Hypermobile is to get properly diagnosed - not just what

type of EDS if you have it but also the other conditions that go with it - POTS,

OI, pelvic congestion, gastroparesis, any eye issues (very common), dizziness,

ear issues (ringing). Knowing what areas of the body and systems are affected

will determine what you can do. For example, if the collagen in your eye is

faulty and the muscles in your eye are weak and causes an eye to move outward -

then there are exercises you can do, prism glasses you can wear, etc to fix that

problem or keep it from getting worse.

Braces or joint wraps during times of exertion - exercise or house cleaning or

physical work to keep the joints from hyperextending. Bad part is that by the

time you are properly diagnosed, you have a lifetime of injury. The younger the

child diagnosed the better (well, above the age of 7 as all kids are hypermobile

till then so it is hard to diagnose). The older you are and as arthritis sets

in, the better you may feel as the joints are not as loose and the restriction

in mobility actually makes the joint more like a normal joint - that's some good

news! If you are over 40, then you can be diagnosed with a lower Beighton score

because of that tightening that happens as you age. Braces cannot be worn

continuously as then the joint gets weak.

I included a list of lifestyle changes I have made in the previous posts.

Swimming is the best exercise as the water pressure keeps the joints in place.

It is also a place to do damage because you feel good so you may inadvertently

do more than you should and feel it when you get out. Warm water swimming - in

the 90's. Many people suggest seeing a PT who does aqua therapy. You get in a

small therapy pool that has a full length mirror and they show you how you are

standing wrong and how to stand right then how to move each joint correctly.

This is supposed to help you learn the proper range of motion for each joint so

you can protect them from damage. Once you learn the range of motion then you

can do it on your own. Haven't done that yet.

Other people have kept themselves in good shape by staying active and fit.

Muscles are better than braces in keeping your joints in place. Impact

sports/activities are the worst.

Otherwise - address each issue - I have gastroparesis so I follow the diet and

take domperidone. Each of us is different so what works for me may not work for

you (sound familiar?!?)

HTH

Marti

>

> Also, Marti, I think Ehlers-Danos syndrome would explain low grade infections.

So much of the immune system is in the stomach. If there are problems there,

then there is your connection, I believe. I've been looking it up and I

definitely have it. I bruise easily, was called a " rubber baby " as a baby, have

had fibromyalgia most of my life, etc and have not recovered well from injuries.

When i was 21 I had something called a snapping psoas and had to have two

surgeries. I can do stretches, most people can't- especially in the places I

have the most pain - my hips, back, etc.

>

> Again- which kinds of docs diagnose this, and from what you know, what are the

" natural " forms of treatment which I can try as a first defense?

>

> Thank you!

>  

>  

>

>

>

>

>

>

>

[Guest guest]

Thanks so much Marti - I have so many more questions!! 

Do you mind if I go offline and write to you? 

(I was originally diagnosed with myo-fascial pain syndrome before fibromyalgia!

I have many eye issues as well, and in my capillaries. I have bowel issues and

stomach issues on a chronic level, besides the infections and some POTS

symptoms). 

 

Kaimowitz

Script Supervisor & Instructor 

917-622-4460

________________________________

From: marti_zavala <marti_zavala@...>

Sent: Wednesday, July 4, 2012 11:15 AM

Subject: Re: Marti/Ehlers-Danlos Syndrome - EDS was: Workup

for POTS and/or Orthostatic Intolerance

 

Hi ,

Here is the link to the original post:

/message/134778

Very interesting to consider your thoughts on the immune dysfunction. I have

had other responses to my post on another board who DID feel that immune

dysfunction was a more closely related disorder - possibly connected. So, I

don't know where I stand on that yet - open to it going either way. In regards

to collagen and gut - my thoughts were that the collagen altered mechanical

function not chemical function but I could be wrong!

The fibro that you speak of may not be fibro but instead myofascial pain

syndrome. And there are different ways to get relief (not Lyrica, Cymbalta or

Neurontin). I don't know much about this yet as I haven't gone for my PT yet.

From your description of being a rubber baby - that sounds like Hypermobile EDS

or HEDS previously known as Type III (and previously known as BENIGN Joint

Hypermobility Syndrome) but nothing benign about it.

The best doc to diagnose this would be an Adult Geneticist, possibly as part of

a teaching hospital who has experience with Connective Tissue Disorders of which

EDS and its types are just one kind. The next best would be a rheumy but not

many people have had luck with them. ANY doc can diagnose if they have seen it

before. My EP diagnosed me as people with EDS have POTS so he has seen it a

lot. You should be evaluated by a cardiologist for the vascular issues that

come with vascular EDS even if you are a different type.

The top docs (there are about 10 in the US) are Dr. Francomano in

Baltimore, Dr. Brad Tinkle (in Cinncinnati but moving to Chicago soon), I think

Dr. Levy.

As far as I have read - the past 3 months - collagen supplements do not help.

The body produces some good collagen and some faulty collagen and ingesting good

collagen does not seem to integrate into the body's tissues.

There is research regarding the vascular type that a particular medication helps

the body make more good collagen so it is not a cure but would be a

preventative. Still early days in the research of this and certainly not

available to take yet. This would not help the other types much because the

medication helps body to create that particular kind of collagen. HEDS is a

fault in a different kind of collagen. And Classical EDS is yet another type of

faulty collagen.

The best defense for Hypermobile is to get properly diagnosed - not just what

type of EDS if you have it but also the other conditions that go with it - POTS,

OI, pelvic congestion, gastroparesis, any eye issues (very common), dizziness,

ear issues (ringing). Knowing what areas of the body and systems are affected

will determine what you can do. For example, if the collagen in your eye is

faulty and the muscles in your eye are weak and causes an eye to move outward -

then there are exercises you can do, prism glasses you can wear, etc to fix that

problem or keep it from getting worse.

Braces or joint wraps during times of exertion - exercise or house cleaning or

physical work to keep the joints from hyperextending. Bad part is that by the

time you are properly diagnosed, you have a lifetime of injury. The younger the

child diagnosed the better (well, above the age of 7 as all kids are hypermobile

till then so it is hard to diagnose). The older you are and as arthritis sets

in, the better you may feel as the joints are not as loose and the restriction

in mobility actually makes the joint more like a normal joint - that's some good

news! If you are over 40, then you can be diagnosed with a lower Beighton score

because of that tightening that happens as you age. Braces cannot be worn

continuously as then the joint gets weak.

I included a list of lifestyle changes I have made in the previous posts.

Swimming is the best exercise as the water pressure keeps the joints in place.

It is also a place to do damage because you feel good so you may inadvertently

do more than you should and feel it when you get out. Warm water swimming - in

the 90's. Many people suggest seeing a PT who does aqua therapy. You get in a

small therapy pool that has a full length mirror and they show you how you are

standing wrong and how to stand right then how to move each joint correctly.

This is supposed to help you learn the proper range of motion for each joint so

you can protect them from damage. Once you learn the range of motion then you

can do it on your own. Haven't done that yet.

Other people have kept themselves in good shape by staying active and fit.

Muscles are better than braces in keeping your joints in place. Impact

sports/activities are the worst.

Otherwise - address each issue - I have gastroparesis so I follow the diet and

take domperidone. Each of us is different so what works for me may not work for

you (sound familiar?!?)

HTH

Marti

>

> Also, Marti, I think Ehlers-Danos syndrome would explain low grade infections.

So much of the immune system is in the stomach. If there are problems there,

then there is your connection, I believe. I've been looking it up and I

definitely have it. I bruise easily, was called a " rubber baby " as a baby, have

had fibromyalgia most of my life, etc and have not recovered well from injuries.

When i was 21 I had something called a snapping psoas and had to have two

surgeries. I can do stretches, most people can't- especially in the places I

have the most pain - my hips, back, etc.

>

> Again- which kinds of docs diagnose this, and from what you know, what are the

" natural " forms of treatment which I can try as a first defense?

>

> Thank you!

>  

>  

>

>

>

>

>

>

>

[Guest guest]

HI ,

I prefer on the forum if possible so we can all learn from each other and

perhaps someone will see something that resonates or that they have experience

with.

If it is something that is TMI for the group, then feel free to backchannel that

part.

Happy to answer what I can, though I am still new to this diagnosis.

Marti

> >

> > Also, Marti, I think Ehlers-Danos syndrome would explain low grade

infections. So much of the immune system is in the stomach. If there are

problems there, then there is your connection, I believe. I've been looking it

up and I definitely have it. I bruise easily, was called a " rubber baby " as a

baby, have had fibromyalgia most of my life, etc and have not recovered well

from injuries. When i was 21 I had something called a snapping psoas and had to

have two surgeries. I can do stretches, most people can't- especially in the

places I have the most pain - my hips, back, etc.

> >

> > Again- which kinds of docs diagnose this, and from what you know, what are

the " natural " forms of treatment which I can try as a first defense?

> >

> > Thank you!

> >  

> >  

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Of course - that makes perfect sense, and thank you. I have a ton of questions

about all the natural/alternative solutions you mentioned, so I will compile my

questions and ask them here.

 

Kaimowitz

Script Supervisor & Instructor 

917-622-4460

________________________________

From: marti_zavala <marti_zavala@...>

Sent: Wednesday, July 4, 2012 12:47 PM

Subject: Re: Marti/Ehlers-Danlos Syndrome - EDS was: Workup

for POTS and/or Orthostatic Intolerance

 

HI ,

I prefer on the forum if possible so we can all learn from each other and

perhaps someone will see something that resonates or that they have experience

with.

If it is something that is TMI for the group, then feel free to backchannel that

part.

Happy to answer what I can, though I am still new to this diagnosis.

Marti

[Guest guest]

Can you tell us more about the specific eye issues that are common?

--

The Kafka Pandemic: http://thekafkapandemic.blogspot.com

[Guest guest]

Hi there,

The foremost doc in the EDS/eye area is Dr. Driscoll. She was an

opthomologist until her EDS issues became severe and she is unable to work. She

has been a researcher to help her two children (almost adult children now) and

herself get better. She has many videos on You Tube and discusses EDS, Chiari

Malformation, POTS, Mast Cell Disorders, etc.

Here is a link to a powerpoint presentation that she gave at the 2010 EDNF

conference. This is the best information I have found on the various things

that can go wrong with the eyes due to EDS:

http://www.totaleyecare.com/-Driscoll-Ehlers-Danlos-Syndrome-Your-Eyes-PRES\

ENTATION.pdf

And here is a link to the quick print handout to take to your eye doctor that is

part of the previous powerpoint presentation but written in a better format to

print:

http://www.totaleyecare.com/-Driscoll-Ehlers-Danlos-Eye-Doctor-HANDOUT.pdf

Here is a link to a brochure that can be printed and taken to a doctor.

ENDF.org has one of these brochures for each of the major areas of difficulty -

pain, surgery, dentistry.

Here is the one for opthomology:

http://www.ednf.org/documents/MRGOphthalmologyS.pdf

This should get you started. If you need more info here are some additional

resources to google:

http://www.ednf.org/index.php?option=com_content & task=view & id=1730 & Itemid=888890\

64

Let me know if you need more - I can help research. This is the information I

have read and reviewed so I could get my hands on it quickly.

Marti

>

> Can you tell us more about the specific eye issues that are common?

>

>

>

> --

> The Kafka Pandemic: http://thekafkapandemic.blogspot.com

>

[Guest guest]

forgot one more link:

Here is a link to Dr. 's forum where these topics are discussed:

http://prettyill.com/forums/viewforum/7/

Marti

> >

> > Can you tell us more about the specific eye issues that are common?

> >

> >

> >

> > --

> > The Kafka Pandemic: http://thekafkapandemic.blogspot.com

> >

>

[Guest guest]

Actually I meant Could you, if you know and feel like it, summarize in

a sentence or two what the main problems are, as you have discovered

by frequenting forums and in your research. The PDFs are not

displaying.

[Guest guest]

Hi ,

I don't really " know " as I have only read through the material once or twice,

printed it and took it to a neuro-opthomologist.

I had a curtain fall and block my vision for a little while but it went away.

He found no issues so I haven't gotten very far. Other than that, I only

experience a little blurriness and some floaters.

Dr. 's info is where I prefer to point you rather than my inadequate

knowledge:

I captured the text and pasted it here with the links. Not sure why the .pdf

are not loading.

___________________________________________

http://www.totaleyecare.com/-Driscoll-Ehlers-Danlos-Syndrome-Your-Eyes-PRES\

ENTATION.pdf

Ocular Findings Possible with EDS

Epicanthal folds

High myopia

Keratoconus

Blue sclera

Lens subluxation

Angiod Streaks

Cataracts

Dry eyes

Glaucoma

Photophobia

Retinal Detachments

Strabismus

Macular Degeneration

Posterior Staphyloma

Carotid-cavernous sinus fistulas

Ocular symptoms that patients complain of that may or may not be EDS:

Blurred vision that comes and goes; difficulty in

accommodation

Seeing double – out of one eye, or with both eyes

open.

Light sensitivity

Complete, or almost complete, loss of vision in one eye

that lasts a few minutes; migraine auras

Dry eyes

Tunnel vision

Floaters

Eye Examinations

Annually, with no symptoms

Immediately if you notice: double vision, flashes of light (with or without

" floaters " ), pain,

redness or discharge, a curtain coming up over your vision

Frontal headache, and you " hear " your pulse in your temple

Sudden change in vision

Educate your doctor

Vitreous

Made with collagen fibers

Becomes more liquid over time

Can cause retinal detachment, floaters

EDS-ers are believed to experience more floaters

Flashes of light, curtain over your vision - emergency

Retina

Neural tissue

Thin sclera, weak or stretchy sclera can cause myopia

Look for blue sclera

More prone to retinal holes, detachments, staphylomas, degeneration of the

peripheral retina.

Dilation of the eyes recommended

Diplopia

See your eye doctor right away if the double vision is of sudden onset,

especially if vertical.

Notice: Is it out of one eye only?

Is it vertical or horizontal or both?

Only with near or distant objects?

Any other symptoms (lid droop?

pupil look bigger than other eye?

Causes

Structural: lens subluxation, staphyloma,

weakness of eye muscles

Neurological:

III. Nerve (oculomotor palsy) or IV. Nerve (trochlear nerve palsy)

If III. Nerve, and pupil is spared, it is ischemic. If pupil is involved, is

usually due to

compression.

Basic rule: sudden onset, see your eye doctor.

Loss of Vision

Complete or incomplete, one eye or both, lasting a few minutes.

Sudden onset: see your doctor.

Want to be sure it is not a blocked artery (or vein). CRA, CRV, branch artery

or branch vein

occlusion. Can cause stroke.

Migraine episode: scintillating scotoma, may or may not get a headache, is

vascular.

______________________________________________________________

http://www.totaleyecare.com/-Driscoll-Ehlers-Danlos-Eye-Doctor-HANDOUT.pdf

Handout for Patients to Take to Their Eye Doctors

I have Ehlers-Danlos Syndrome Type ____, which causes defective connective

tissue in my collagen. Please be sure to check carefully for the following:

Epicanthal folds

High myopia

Keratoconus

Blue sclera

Lens subluxation

Angioid Streaks

Cataracts

Dry eyes

Glaucoma (with pachymetry)

Photophobia

Retinal Detachments, holes, tears

Strabismus

Macular Degeneration

Posterior Staphyloma

Carotid-cavernous sinus fistulas

Accommodative difficulties

Dry eyes

Diplopia, monocular or binocular

Large phorias which may be symptomatic

Blepharoclonus

Recommended Ocular Testing for the Patient with EDS

Complete slit lamp exam with TBUT. Understand that I may be more prone to

corneal dystrophies and dry eyes.

Dilated fundus exam; fundus photography

Corneal topography to rule out early keratoconus

SLO may be needed – Scanning Laser Ophthalmoscopy

Orbscan and/or ultrasound pachymetry

EDS patients are not good candidates for LASIK.

Pupil testing (rule out APD), aperture measurements (check for ptosis), rule out

blepharoclonus.

I may be more prone to migraine episodes and/or aura without the migraine

headache.

I may be more prone to macular degeneration

For more information see http://j.mp/eds-eye-info

___________________________

Hope this is the kind of info you were looking for.

Marti

>

> Actually I meant Could you, if you know and feel like it, summarize in

> a sentence or two what the main problems are, as you have discovered

> by frequenting forums and in your research. The PDFs are not

> displaying.

>