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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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UK specialists?

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

  • This topic has 3 replies, 2 voices, and was last updated 7 years, 4 months ago by Desperado.
Viewing 4 posts - 1 through 4 (of 4 total)
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    Posts
  • January 1, 2016 at 7:01 pm #931
    uk-sickmedic
    Participant

    Are there any specialists in the UK who are familiar with the Driscoll Theory? I have diagnoses which include a hereditary disorder of connective tissue/hypermobility syndrome, POTS-like dysautonomia, GI involvement, musculoskeletal & neuropathic pain plus several other symptoms. I am suspicious of possible vagal nerve involvement and ICP issues having found this website. I would be very interested to know if there are any links with UK consultants or specialists.

    January 1, 2016 at 8:49 pm #5772
    Barbara
    Participant

    I don’t think there are, well at least I haven’t found one yet (please let us all know if you find one!). You just have to find a consultant who could possibly diagnose the raised intra-cranial pressure based on one of the medical signs, such as a Neuro-opthalmologist who might find a swollen optic disc – though remember you can have raised ICP without this sign. I was lucky and this sign was visible (though it wasn’t blatant) but I was able to obtain Diamox. I only needed a small dose and it made such a difference.

    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.

    January 13, 2016 at 10:44 am #5791
    Desperado
    Participant

    Hi there ! Dr Mathias in London imperial college I think is the best person to see re autonomic disorders.Your Gp can refer you even if not living in the London area

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