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PrettyIll

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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: New EDS'r–POTS v. TCS v. MCAS?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › New EDS'r–POTS v. TCS v. MCAS? › Reply To: New EDS'r–POTS v. TCS v. MCAS?

December 30, 2012 at 6:01 pm #3276
Dr. Diana
Keymaster

Hi Blue129, of course it is impossible to diagnose/treat over the internet, right? I will say that I NEVER believe an MRI report unless I actually SEE the images myself (you would not BELIEVE what I have seen called “normal”. yikes.) I hope your doctor has checked CLOSELY for MRI/MRV and bloodwork abnomalities. Tingling and numbness can be low B12 or thick blood. I have a video out (about the MTHFR genetic defect — it also mentions other prothrombotic tesing)it is likely worth watching (not to mention, the bloopers are great. ha.) Is there any chance you have interstitial cystitis? (be SURE to have that ruled out!) If you are considering TC surgery,, please TALK to patients who had had the procedure — at least 1-2 years out, OK? I think a lot of us are prone to poor healing and may have fibrillary defects (more video fodder — Stanford found this out). This makes us more prone to CSF leaks, and by cutting into the cord, we subject ourselves to that possibility. I know of patients who developed chronic leaks after LP’s and it was a living nightmare for them. I am not saying “don’t have the surgery”. I AM recommending that you rule out ALL other possibilities, KNOW what your risks/rewards may be and do your homework by talking to other patients. K? Hang in, my friend. Big hug….

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