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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: Is it a Mast Cell Problem

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Is it a Mast Cell Problem › Reply To: Is it a Mast Cell Problem

May 27, 2012 at 10:18 am #2228
Dr. Diana
Keymaster

As I was out searching for more info on Mast Cell Disease, I stumbled across this: http://www.jcadonline.com/telangiectasia-macularis-eruptiva-perstans-a-rare-form-of-adult-mastocytosis/ (click on Figure 1 & Figure 2 to see the picture). I have these eruptions!! They come & go and remain mostly on arms & trunk. This is confirming it more & more. Anyone else get them??

Does the type of Mast Cell Disease make a difference as far as treatment is concerned (skin vs systemic)? I plan to bombard my doctor with lots of questions, but want to make sure I understand as much as possible to ask the questions I need to!! Are blood or urine tests enough to get an ‘official’ diagnosis? I’m planning to bump up the ZZ combo before I go see her so I can have some ‘proof’ to hopefully get a good discussion.

There are so many ways that we can be slammed with mast cells! I’ve even seen patients with bullous cutaneous mastocytosis (google images). A real looker, that presentation! Personally, I any overgrowth of mast cells should be treated aggressively. Cromolyn sodium or Ketotifen is important. If you have the area biopsied, a dermatologist told me DO NOT SCRATCH IT prior to biopsy, otherwise, they can’t necessarily see the mast cells.

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