• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer

PrettyIll

Header Right

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.

  • Home
  • The Driscoll Theory®
  • Videos
  • Meet Dr. Diana
  • Forum
  • Store

Rare medical conditions – EDS?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Rare medical conditions – EDS?

  • This topic has 2 replies, 2 voices, and was last updated 8 years, 5 months ago by Barbara.
Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
    Posts
  • August 30, 2014 at 5:41 am #727
    Del
    Participant

    I am 25 years old, male, and seem to display a lot of signs of EDS: some joints (fingers, shoulders, hips) are very flexible (although they do not get dislocated), the skin is very flexible (especially facial skin), I can change the volume of my tongue by an insane amount (“hypermobile tongue”), local anesthetics are not effective when applied to my facial area. There are other parts of my body that are extremely flexible. I am also very skinny (heights: 180 cm, wight: 55 kg), have low bone density, my hair is thin (fine), and I have very smooth skin.

    I seem to suffer from chronic fatigue syndrome (along with excessive daytime sleepiness), have a VERY low tolerance for high temperatures (more than 25 degrees Celsius), have slight photophobia (much higher sensitivity for sunlight, than artificial light), have frequent sinus and migraine headaches, occasional periods with impaired memory, occasional periods of night sweats. MRI scan of my brain indicates my blood vessels are thinner than normal, globally.

    All of the above signs could be prescribed to EDS, I think. But, here are some general and current rare symptoms that I have had or am having, that I suspect are related to EDS. It would be great if someone can provide more info on this.

    (i) As I child I had a very rare form of a benign tumor called ganglioneuroma in abdomen.
    (ii) As I child I also had a very rare conditions called Meckel’s diverticulum.
    (iii) I suffer from a rare condition called retrograde ejaculation. Current hypothesis is that this might have been caused by the operation of the tumor, but this has not been proven.
    (iv) I have chronic sinusitis, with constant post nasal-drip. Antibiotics are not effective.
    (v) Recently, I have been having constant headaches and sinus pain with post nasal-drip (5 weeks non-stop). During this time, I have developed yet another very rare symptom called median rhomboid glossitis (a rare form of tongue inflammation).

    My current hypothesis is that probably all the symptoms are related to EDS. I have decided to take systemic antifungal medication to treat sinusitis and glossitis.

    In addition, I have an extreme form of fear of heights (acrophobia) since I was born, with no apparent trauma. I wonder if this could be somehow related to EDS. I doubt it is, but I will leave it here, as there might be interesting opinions. Also, I have a slight hypokalemia.

    It would be great if anyone has a feedback to share. ^^

    September 6, 2014 at 9:43 am #5042
    SunshineLollipops
    Participant

    Hey There,
    I started a new eating plan that I think may help your sinus problems, which may be due to an overgrowth of yeast. The website is http://www.healingnaturallybybee.com . I am not affiliated with the website but yeast overgrowth can have so many of the same symptoms as a lot of us have and could also worsen them. Hope you get to feeling better soon.

    October 8, 2014 at 6:26 am #5064
    Barbara
    Participant

    I’m sorry but I don’t have experience or knowledge of any of the particular complaints you have been diagnosed with, not even the sinus problems but I know many on here have. Your thin blood vessel walls I have come across in passing, is your skin translucent ? Have you been checked for EDS ?

    You certainly have hypermobility from the sound of it and that, plus the blood vessel thing is a collagen issue. Do you get much meat, fish, poultry, eggs, nuts in your diet, essentially every day and what’s your intake of fresh fruit and veg like ? Both of these are very important to help make good collagen.

    Also try to get 2-3grams of iodised salt every day, otherwise it may be irrelevant what you eat, as it won’t be being digested and absorbed properly.

  • Author
    Posts
Viewing 3 posts - 1 through 3 (of 3 total)
  • You must be logged in to reply to this topic.
Log In

Footer

PrettyIll.com

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

Twitter: @prettyill

What others say

“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

Listings by topic

  • Chronic Fatigue
  • Consult
  • Contact
  • Coping
  • Ehlers-Danlos
  • Fibromyalgia
  • Hydrocephalus
  • Mast Cell Disease
  • Multiple Sclerosis
  • Orthopedic Issues
  • Pain Control
  • POTS
  • Speaking Engagements
  • Store
  • Uncategorized
  • Vascular abnormalities

This work may not be reproduced, copied or used in anyway without the express permission of the author -- that's me © Dr. Diana Driscoll 2020