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Anyone with Pots and EDS
Is there anyone with Pots and EDS and what sort of symptoms do you get?
Oops! I meant to say POTS is a symptom cluster syndrome, EDS is a disease, but you can have some EDS-like symptoms without having the disease. Severe growth hormone deficiency can cause connective tissue breakdown.
My son MAY have both POTS and EDS. He has symptoms of both, but has not been formally diagnosed yet, only suspected. A cardiologist suggested EDS because of his hyperflexible joints and severe orthostatic intolerance. He can only stand for about 20 seconds now, before weakness and dizziness sets in. He also has low muscle tone and very soft,"doughy skin".
However, my son has other significant medical issues which are more likely the cause of his POTS and EDS (which are both symptom cluster syndromes, not diseases). He has extremely low growth hormone levels and secondary adrenal insufficiency, as a result of a pituitary tumor that caused damage to the gland. He also has some metabolic abnormalities and severe oxidative stress. He is 14.
He has an appointment with genetics in November.
However, my son has other significant medical issues which are more likely the cause of his POTS and EDS (which are both symptom cluster syndromes, not diseases). He has extremely low growth hormone levels and secondary adrenal insufficiency, as a result of a pituitary tumor that caused damage to the gland. He also has some metabolic abnormalities and severe oxidative stress. He is 14.
He has an appointment with genetics in November.
Hi I know we do have members that have both....I am sure they will post...I also have chiari, tethered cord and EDS.....no POTS dx to date.
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