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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: Mast Cell Disorder

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › CCSVI › Mast Cell Disorder › Reply To: Mast Cell Disorder

October 6, 2013 at 1:47 am #4486
Inafog
Participant

Thanks Diana,

It is so hard navigating all of this. It seems like each week I have a new rare disease!!! My CSF leak is cervical , and I have been to a specialist and you would know me as nancy on the CSF leak website.. I have been patched about 10 times, but the patches hold until the glue dissolves. My leak is in the nerve roots of my 3 very hyper mobile cervical joints c4-c6. I do get some symptom relief for a few months each time, and then I go back for more glue. The leak is the worst of my symptoms…the dysautonomia comes in second , the gastro issues run a close third!

I was just so curious if the low WBC was a sign of all or this stuff…with your response, I think Mast cell is something I can just table for now.

Do you have any information about diabetes Insipidus? Or heard of it in conjunction with this whole EDS picture?

I read about your study, and I do have terrible GI issues, verrrrrrry slow motility, but I live in the NW. Does the study take place in Texas?

Thank you so much for being a warrior for all of us!

Hugs

Nancy

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