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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.

Water Retention

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Water Retention

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  • June 13, 2012 at 1:32 pm #223
    Prettytired
    Participant

    Ugh, the water retention is driving. me. crazy. I know Dr. Diana said that’s a common issue for us. Has anyone figured out how to flush it out? I’m still working on getting Diamox & Gastrocrom because (go figure) my doctor Monday did not want to get involved so now I’m pleading with my Neurologist (as I’ve also upset my primary and suppose I need to find a new one). Will the Diamox flush CSF AND excess fluid elsewhere? I’m beginning to notice the water going up and down HOURLY; sometimes my clothes feel really tight and hands/feet look swollen.

    Because my hormones have ‘gone wild’, they put me on progesterone a year ago; I gained 10 lbs in 10 days and never lost it. We went a few rounds & stopped because I wasn’t responding. Well, another doctor thought he could figure it out and started me on DHEA first 2 months ago… another 8 lbs in 10 days. That is 18 lbs of water that never went away.

    Suggestions?

    June 13, 2012 at 6:02 pm #2419
    Barbara
    Participant

    Hi,
    I find the swelling really weird because normal people loose their fluid retention overnight, not me, I wake up with my hands swollen, it’s almost like having boxing gloves on. Can anybody explain this ? is it to do with the Mast Cell Activation ?
    Thanks
    Barbara
    (UK)
    Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!

    June 13, 2012 at 8:00 pm #2420
    ScaredSingleMamainMaryland
    Participant

    Something weird that happens with me is when I get IV fluids, my abdomen gets really swollen and it takes about 3 days before it is back to normal. I also get swelling in my hands and sometimes feet.

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