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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: UK specialists?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › The Latest Research › UK specialists? › Reply To: UK specialists?

January 1, 2016 at 9:03 pm #5773
Barbara
Participant

Just an afterthought – whoever you see, don’t let them use any invasive methods to test for raised ICP, as it can worsen your situation, especially if you have low-lying cerebellar tonsils on your mid-sagittal MRI, see

http://prettyill.com/forums/viewthread/993/#4251

The low-lying cerebellar tonsils can actually act as a ‘bung’, giving a false negative result (when your pressure above the ‘bung’ could be raging!)

There is another sign of raised ICP sometimes seen on MRI’s but, it’s usually when the pressure is very high and that is, flattening of the back of the eye itself. My advice is, ask whoever is assessing you, to look for subtle signs because these are often overlooked and we are subsequently left to fend for ourselves.

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