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Ehler's Danlos -- Connective Tissue Disorder

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Old 10-13-2017, 01:28 PM   #1
caroline2
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Default Ehler's Danlos -- Connective Tissue Disorder

I was trying to find an E.D. area here but could not...maybe I just didn't see it. Anyway a person on another group is seeking help for their young daughter's recent dx of E.D. I heard about the disorder and PRP a couple weeks on my medical radio program and did a search and found a lot of info. There is HELP.

Joint hypermobility syndrome (JHS) | Ehlers-Danlos syndrome (EDS) hypermobility type (EDS-HT) - Prolotherapy.org

There are PRP workers/doctors in the U.S. who do this work for Ehler's Danlos.

Here is one location in the U.S.

Prolotherapy for Ehlers-Danlos Syndrome – Caring Medical
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OA onset at 18, now 79. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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Old 06-26-2019, 08:34 AM   #2
janieg
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Default

My boss' 20 year old daughter who had to drop out of college because of vertigo and neuropathy has just been diagnosed with E.D. It was diagnosed with an EMG test that detected nerve impact due to hypermobility of her joints.

I don't believe they think the vertigo is related to it, but they strongly believe that's the cause of the bad burning pain she's been experiencing in her arms and hands.



Quote:
Originally Posted by caroline2 View Post
I was trying to find an E.D. area here but could not...maybe I just didn't see it. Anyway a person on another group is seeking help for their young daughter's recent dx of E.D. I heard about the disorder and PRP a couple weeks on my medical radio program and did a search and found a lot of info. There is HELP.

Joint hypermobility syndrome (JHS) | Ehlers-Danlos syndrome (EDS) hypermobility type (EDS-HT) - Prolotherapy.org

There are PRP workers/doctors in the U.S. who do this work for Ehler's Danlos.

Here is one location in the U.S.

Prolotherapy for Ehlers-Danlos Syndrome Caring Medical
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning (suspect mild dehydration); referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, and salt consumption makes my neuropathy 100x worse.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil
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