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

Posted by healthhopefreedom @healthhopefreedom, Dec 18, 2020

Hello,

I am looking for a community of EDS and HSD folks.

I am waiting a confirmatory second DNA test for Vascular Ehlers Danlos Syndrome. Currently I am experiencing weakness in the extremities, further slipping of joint articulation even while resting, unregulated body temp and blood pressure,
POTS, migraines, menstrual complexities, chronic widespread pain, fibromyalgia, and on the verge of depression.

@lifetimepain

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.

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Thank you for the encouraging message.

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@healthhopefreedom

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!

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Thanks for the clarification, @healthhopefreedom. I have changed the copy to Hypermobile Spectrum Disorder for HSD. I like to think of myself as the acronym buster, but I busted wrong this time. That's the problem with acronyms. 🙂

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Hello. I have EDS symptoms, too.

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I have had all texts 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.

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@wittmack

I have had all texts 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.

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Hi @wittmack, I moved your newest post to this discussion where you already connected with @healthhopefreedom @lisafl @lifetimepain @smbryce1 and others to see if they may have some thoughts on your questions about an overactive bladder. At 79 an overactive can be related to many things. Have you connected this with EDS?

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@sallysunshine

Hello. I have EDS symptoms, too.

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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?

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@smbryce1

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

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Thank you for your very in-depth descriptions. Over the course of many years I have been diagnosed with possible EDS as no surgery I had healed well, my insides are all falling out and have been repaired once with a little help, G.I. problems plus I have ataxia. I will keep watch on your site. thanks again.

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@colleenyoung

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?

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Hi Colleen. I didn't know you had responded… thanks for doing so. I'm having cognitive issues right now and it is difficult for me to organize things. I suspect a chiari malformation problem (was diagnosed with this 11 years ago, but not offered any care for it or told it could create problems). I have a long list of EDS and Marfans symptoms. I'm trying to organize all the data. I am seeing a neurologist in the Twin Cities later today. It does not appear that Mayo doctors want me as a patient.

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@sallysunshine

Hi Colleen. I didn't know you had responded… thanks for doing so. I'm having cognitive issues right now and it is difficult for me to organize things. I suspect a chiari malformation problem (was diagnosed with this 11 years ago, but not offered any care for it or told it could create problems). I have a long list of EDS and Marfans symptoms. I'm trying to organize all the data. I am seeing a neurologist in the Twin Cities later today. It does not appear that Mayo doctors want me as a patient.

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@sallysunshine, I'm glad that you have found a specialist with whom you are comfortable. Hopefully the Twin Cities is also closer for you and that you're able to confirm a diagnosis and treatment or management plan.

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@colleenyoung

@sallysunshine, I'm glad that you have found a specialist with whom you are comfortable. Hopefully the Twin Cities is also closer for you and that you're able to confirm a diagnosis and treatment or management plan.

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I'm using a combination of doctors. Some Mayo doctors are terrific. I wanted a neurologist treating me who actually talks to me, meets me, and answers my questions. Not just a random doctor who looks at a test result and then writes a report. I'll do my best to avoid any further e-consults at Mayo.

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@sallysunshine

I'm using a combination of doctors. Some Mayo doctors are terrific. I wanted a neurologist treating me who actually talks to me, meets me, and answers my questions. Not just a random doctor who looks at a test result and then writes a report. I'll do my best to avoid any further e-consults at Mayo.

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Now I understand @sallysunshine. I've written more to you in the eConsult discussion you started here: https://connect.mayoclinic.org/comment/592549/

Keep us posted on your health journey and what you and your neurologist work out to be next steps.

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@sallysunshine

I'm using a combination of doctors. Some Mayo doctors are terrific. I wanted a neurologist treating me who actually talks to me, meets me, and answers my questions. Not just a random doctor who looks at a test result and then writes a report. I'll do my best to avoid any further e-consults at Mayo.

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In reply to @colleenyoung @migizii….if you are speaking of neurologists, I had an experience at Mayo that was very disappointing. The doctor did not listen to my needs and wrote a report that didn’t reflect the mountain of records he requested I bring, so I had to assume those reports were mostly ignored. The consult was approximately 20 minutes; no tests involved; for chronic migraines that had been going on for many years by the time I landed at his office. I kept on my journey and found the resources I needed. I have found Mayo to be wonderful for many issues, but that was my first experience and it took a number of years before I reached out their way again.

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