- This topic has 1 reply, 1 voice, and was last updated 5 years, 1 month ago by .
- You must be logged in to reply to this topic.
I have been looking into EDS and am definitely wondering if if should ask a Dr about it. I’m kinda worried I’ll look crazy though. Here are some of the Heath issue I have experienced and maybe someone can help me evaluate if/how I should approach a Dr about it.
Stroke- I’m 25, MRI/MRA showed small infraction in my cerebellum. also showed Hypoplastic vertebral and anterior cerebral artery, which I guess I could have been born with. Ultrasound also showed “somewhat globally elevated intcranial velocities”
My collar bone pops out at the end when I lift my arm-my brother can also do this, it really freaks people out.
Sometimes when I move my neck I will get a intense electrical shock like sensesation from the back of my head into my neck.
Siezures and fainting since age 8-neg EEG with no know cause.
My Dr told me to get a massage because of a stiff neck and the therapist said my first vertabrea had slipped out?
Some other things I experience, dizziness upon standing, migraines with scary visual symptoms, side pain on urination, low platelet count with pregnancys, joint pains, easy bruising and rib cage cramps…. There’s more but I won’t go on and on. I’m flexible I can doreverse namaste, thumb to forearm… Any help would be appreciated I have a appointment soon with a nuero stroke specialists and idk if it would be a good idea to mention these things to her or not?
Hi and welcome to the forum! I think your doctor will want to know about all of your concerns, certainly. I do not know if you have had a stroke, but clotting is something we see a fair amount of (do you have the free brochure from the http://www.POTSCare.com site? That may be helpful. I don’t know if you have seen our findings concerning a propensity for high intracranial pressure causing many neck symptoms (and other issues), but it is worth considering, too. Do you have The Driscoll Theory book that explains this? 🙂
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.
“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