Ehlers Danlos Syndrome (EDS) & HSD, calling all types!

Hi @healthhopefreedom,
Let me connect you with other members who have experience with Ehlers-Danlos Syndrome (EDS) and/or Hypermobile Spectrum Disorder (HSD) like @lovemyfamily2003 @katemschultz @lisafl @jthigpen @kariulrich @blossom2016, who have shared their experiences in these discussions:

- Ehlers Danlos Syndrome - Who is the best doctor to see? https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/
– Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
– Possible Ehlers-Danlos Syndrome with craniocervical instability https://connect.mayoclinic.org/discussion/possible-ehlers-danlos-syndrome-with-craniocervical-instability/

@healthhopefreedom, it sounds like you're at the beginning of confirming a diagnosis, but certainly not new to experiencing a wide range of symptoms. How long has this been going on? How are you doing today?

First let me say that I am so sorry to hear that you have this syndrome, particularly the type you have. I have Classical-like EDS. I do understand your pain. I too have a myriad of painful situations. Try really hard not to settle into depression, it's hard to climb out. Be thankful for seeing, breathing, smiling. I try to think of the millions of homeless, hungry children - and that puts things into perspective for me - my problems don't seem so bad. Please let us know how you are doing.

Hi @colleenyoung, I appreciate you connecting me with members. I wanted to mention so that we don't get any confused connections on here that HSD was meant to be Hypermobile Spectrum Disorder, but if anyone with Hallervorden-Spatz disease can benefit or contribute to these posts, please do!

I have had all teats but the genetic test to confirm EDS. Symptoms seem to be increasing. I wonder if anyone has experienced an overactive bladder at night. sleep aids don’t work for me as they further relax the muscles. I have multiple side effects with the bladder pills and found that a Benadryl at night helps me sleep. However due to afib that doesn’t work either. I am a 79-year-old female who also has ataxia. What to do? Thank you for any suggestions.

Hello. I have EDS symptoms, too.

Hello, I almost never am logged in here anymore (in fact i had to reset my PW to login so I could reply to you) but mayo sent me an email recap of this week’s posts and I remember being in a very similar position to you in 2013. What is it that makes them think you have vascular EDS? Did you have vascular symptoms that lead them down this particular rabbit hole or are they just ruling out the one type of EDS they treat? Which Mayo are you seen at? (They are in various states and some have treatment for diseases others do not) Do you also have severe allergies?

Three main things I wanted to say: you will find your answers, you are not alone, and unless mayo has changed their policies since 2013 (let’s hope they do) they don’t acknowledge or treat anything BUT the type of EDS that is vascular. But you didn’t actually mention any symptoms that are vascular except perhaps pots. Are you on Facebook? There are MANY EDS support groups over on Facebook. You are less likely to run into EDS patients here since so few are treated in the mayo system. If you are in Phoenix, there is one doctor I was recommended to see who is a neuro muscular neurologist who actually does treat some EDS patients who are hypermobile type which doesn’t have a genetic test that recognizes it (yet) and there is another doctor outside the mayo system which is more highly recommended, something mayo doctors likely would not bother telling you. His name is Dr Saperstein. If you’re in a different mayo maybe you will have better luck than those of us who were in the Phoenix system did. Or maybe things have changed enough since 2013 or there is a new doctor there willing to treat people with non vascular EDS

A common issue for many people with EDS is to have “severe allergies” sometimes to unusual things or no IGE allergies and yet their body reacts as if allergic, including at times life threatening anaphylaxis to a variety of things. A common comorbidity with EDS is mast cell disorder of some type. Mast cells control over 250 cytokines in the body which control a variety of functions including but not limited to inflammation, phlegm production, asthma type symptoms, GI issues, rashes, bruising, neurological symptoms like migraines, slurred speech that comes and goes, etc. Very few doctors in mayo know how to test for let alone treat mast cell disorders but there are a few. Feel free to private message me if you would like to talk more about any of the above because I left the mayo system for better treatment plans that dug deeper into my EDS and what turned out to be Primary MCAS. I really don’t read this forum often at all (it’s been months if not years since my last login)

Hang in there, you will find answers. If they say you don’t have vascular EDS so we can’t treat you, or anything similar, You may need to find a doctor outside their system or even in a different state depending on where you are. But it’s doable as overwhelming and exhausting as the process can be, you can find respectful, professional, effective doctors who be A good fit for you and will do their best to help you figure out causes and treat your symptoms. At this time there isn’t a cure for EDS, so they mainly treat symptoms, and there are several comorbidities with it, POTS is one (like you mentioned having) Mast cell disorders of some sort are another, and there are others. There are also other causes of hypermobility than EDS, so if they rule that out there are other possibilities that need to be looked I ItP. It can take a while to find the right doctor for each person, but you can. There is light at the end of the tunnel.

Best wishes,
Sean-Michael

Hi @sallysunshine and welcome. Have you been diagnosed with Ehlers-Danlos Syndrome or is this being investigated at the moment? What symptoms do you have?