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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: failed surgery question

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › failed surgery question › Reply To: failed surgery question

October 1, 2014 at 8:37 am #5046
Barbara
Participant

Hi
Thank you for raising this topic.

My only experience of dislocation (of sorts) was at the head and neck junction, like yourself caused by trauma. Unfortunately I haven’t had fixation surgery, so I cannot comment upon life after surgery. I can however comment upon life without surgery and that has been, that the ligaments did not heal, as they should have done.

There are many varieties of EDS (Ehlers Danlos Syndrome), which in simple terms is the body’s inability to produce the right calibre/strength/type of collagen. Much of the body is made of collagen and therefore there are many different types of collagen, for each different type of job. Where the body has difficulty producing one type of collagen, whatever it lays down may be substandard to one degree or another, so it isn’t quite as strong, or as effective at doing that particular job and this leads to the many difficulties that people encounter.

So what causes this problem ? Well, some people are at a genetic disadvantage, as their genes may be defective in one way or another, which makes it difficult for their bodies to produce that particular type of collagen. Some people on here have had their saliva tested with companies like ’23andme’ to obtain their own genome ‘raw data’ and have been able to check the various genes for problems. For example
for EDS type I/II (COL5A1 and COL5A2 gene),
for EDS type IV (COL3A1 gene),
for EDS types VIIA and VIIB (COL1A1 and COL1A2 gene, respectively)
and EDS type VIA (PLOD1 gene).

Another factor that doesn’t help is nutritional deficiency, especially of Protein and Vitamin C, as both of these elements are essential to make collagen, therefore people whose diets lack the regular intake of these, are not helping themselves to achieve optimum health. So we need to ensure that we are getting sufficient amounts of eggs, meat, poultry, fish and nuts, DAILY to provide the protein and a variety of fruits and vegetables daily to supply adequate Vitamin C.

Hope some of this helps.
Barbara
(UK)

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