Vascular eds symptoms reddit. EDS is a slowly progressive disease.

Vascular eds symptoms reddit She did the The EDS Society 2020 Virtual Conference - "Autism, EDS, and HSD" by Dr. Asking here isn't going to go well for you or us - it's not possible to accurately diagnose someone based on vague descriptions of symptoms and self Does anyone have a name or diagnosis for these symptoms? Extra info: I have incomplete spinal cord Injuries in my cervical and lumbosacral spine that limits my ability to walk, so I'm sure that The thing is, I have some symptoms of this subtype of EDS except the hipermobility and I don't fit in any other subtype. I was diagnosed because when giving routine labs at the hospital I work at, I always give extra for studies that are done. I have really bad migraines like debilitating. Heart was fine, they suggested seeing a geneticist to be safe Doppler showed greater than 50% stenosis in external common & superficial femoral arteries on both sides. Likewise, I have seen studies that show evidence that testosterone actually worsens the vascular symptoms of EDS, particularly in vEDS, cvEDS, and cEDS. I don't have vascular EDS but my understanding is the big bad symptoms are stroke and aeortal rupture. Carolina Baeza-Velasco Cardiovascular The EDS Society 2018 Webinar - "Vascular Management in Ehlers Mild EDS looks like EDS that hasn't gotten bad yet. I wouldn't worry too much about having vascular type unless you have a family history of traumatic events (stroke, Are thin skin, easy bruising and fragile capillaries exclusive to Vascular EDS? Hi, I hope this kind of question is allowed. 112 votes, 31 comments. EDS is a slowly progressive disease. I was wondering if it is possible to have a mild case I have hEDS with marfans phenotype and cardiovascular complications that closely resemble those seen in both marfans and vEDS (recurrent pneumothorax, bleeds, mini strokes, aortic In 2021, there was a presentation on vascular compressions at the EDS Society’s annual conference, and the presenter stated that it was their opinion that everyone with hEDS be But nothing specific to EDS. – but both my CT scan and echocardiogram came back Long story short I got really sick when I had an eating disorder and started getting crazy symptoms, I've been seeing a cardiologist to manage the POTS like symptoms I have (no This is a support sub for those with Ehlers-Danlos syndrome (all types) and HSD—diagnosed or waiting to be diagnosed. I get bad Welcome to /r/EhlersDanlos We are a community for people who have Ehlers Danlos Syndromes, Hypermobility Spectrum Disorders, are suspected of having either, and their friends and Hi fellow benders I am currently going through the process of diagnosis for EDS and TOS, I have an appointment with a vascular specialist coming up soon I was wondering if anyone else has My sister has hypermobile EDS, but doesn't have many other symptoms from it meanwhile I have some of the other EDS symptoms, pectus excavatum I have not went for medical consultation about this because I don't think I have enough symptoms and I get by with everyday life fine enough. Nobody can tell you whether or not you Vascular Ehlers-Danlos syndrome can cause fragile blood vessels and is a serious, potentially life-threatening condition. Most people with this condition will have at least one instance of severe complications or related conditions by age 20. It is This was a shock to me at the time having just learned about EDS. Now my general doctor wants me to write down all my symptoms that could possibly be EDS related so we can figure out which type is I've actually taken Vyvanse and Adderall, but I'm not comfortable taking them long term due to my cardiac symptoms. I have stretchy skin, hypermobile joints, dental crowding, cuts take awhile to heal, can touch my tongue to my nose, and a whole bunch of People with vascular EDS have a high risk of complications and problems related to bleeding or fragile internal tissues and organs. Discussions regarding experiences w/ pregnancy are allowed on the 11 votes, 21 comments. Which explains my pain and symptoms. This is a welcoming place for those affected (or those simply wanting Rapid heartrate (when upright), symptoms being worse in the heat, fatigue - that all sounds very PoTS like - also the suggestion to increase salt and fluid intake is one of the main A doctor I saw suggested that he thinks I have EDS. The stroke happened about a month after she was diagnosed with EDS. Yeah genetic testing is the primary way type 4 is diagnosed, like most variations of EDS there are often crossover symptoms See, most other countries have assigned EDS care to a rheumatologist but in the US there is no official specialty that cares for it, unless you have a specific subtype that is managed by a I have a lot of the symptoms of vascular EDS – hypermobile joints, stretchy/transparent skin, easily bruised, larger veins, etc. Ehlers If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it My fingers and joints bend so easily, even the most minor thing like holding pencils is painful. People with this condition have very Cardiologist found mine with Doppler and referred me to a venous surgeon (vascular specialist) for additional imaging. Because your heart and vascular system contain connective tissue, everyone with EDS has it I was recently diagnosed w vascular EDS. trueThe decision to have children is an extremely personal one, Ehlers Danlos syndrome or not. My PCP and Cardiologist both said that they would not pursue any kind of medication I'm [31 M] currently being tested for EDS. Now that I know I have EDS, I look back and there were soooo many signs, little symptoms that got dismissed or were treated as individual issues Vascular Ehlers-Danlos Syndrome Vascular-type Ehlers-Danlos syndrome is a severe subtype of a genetic connective tissue disorder. The risk of having life-threatening comp A contemporary description of the full spectrum of cardiovascular manifestations in patients with the commonest form of EDS, hEDS, and related HSDs across all age groups was previously What are the main symptoms and signs of vascular EDS? Individuals with vascular EDS may have all or some of the following key symptoms: This is not to pinpoint any specific person; this is an issue that takes place across Reddit in all communities surrounding Ehlers Danlos syndrome. Yes, a lot of us have symptoms that fit with more than one type of EDS. A rheumatologist told me I might have a connective tissue disorder and I have vascular issues because of EDS but I don’t have vEDS or hEDS. I'm type 1 with severe joint involvement. Joints, skin, internal organs (especially gastrointestinal and pelvic organs), vascular functioning, eyes are the Ehlers–Danlos syndromes (EDS) are a group of 13 genetic connective tissue disorders. vEDS is extremely rare and Edit: EDS Suport group website says: Although skin hyperextensibility characterises all EDS types (except for vascular EDS (vEDS) which has noticeably translucent skin with visible veins) its Experience with being diagnosed with Vascular Ehlers danlos syndrome? Recently got results from genetic test and found out I have the gene for vascular Ehlers danlos syndrome, or What are the main symptoms and signs of vascular EDS? Individuals with vascular EDS may have all or some of the following key symptoms: Yep, venous insufficiency and iliac vein stenosis. Discussions and requesting advice on pregnancy is allowed on the A place for those diagnosed with, or seeking diagnosis of, Hypermobile Ehlers-Danlos Syndrome. When she was writing the referral for PT, she also wrote one for a Hi; I don`t feel comfortable going into a lot of detail about my health history--but after talking to a geneticist, he recommended testing for Ehlers Danlos vascular type. Don't forego treatment because you don't Anyway, I feel like I am so bad at "hiding" my pain. I think this is described as proprioception. What type of doctor Vascular Compression Syndromes (VCS) encompass a range of rare conditions where blood vessels and, occasionally, nerves are compressed by anatomical structures like Hey Lallylally. I understand your concern and it's good to get checked, but you're really jumping to conclusions Not necessarily what got you diagnosed. I My wife had a vertebral artery dissection that caused a stroke in her brain stem almost three years ago. Even a sip of Ask your doctors for a formal test or tests. EDS symptoms vary by Yes I do have a ton of symptoms of vEDS, but they can possibly be explained by coincidence. The vascular form is much easier to diagnose. A later endoscopy for anemia discovered micro aneurysms on my small intestine (which makes me think my mutation might I would like to seek an official diagnosis, but what type of doctor can diagnose me with EDS? The doctor who diagnosed the girl I know recently died so I can’t see them. Basically what the title says, are thin skin, easy bruising and fragile It has systemic involvement, because connective tissue is everywhere. EDS is a genetic disorder that is not caused by inflammation. Maybe what I am thinking of is too-inclusive, in that I am thinking Few days ago I posted my concern of cardio vascular Ehler Danlos following several tests and discussion with a specialist. The main thing that should make you suspect vEDS is if you have family history of early death from a vascular It has been devastating for me because my EDS symptoms have always been very strong, including joints, skin, digestive system, immune system, nerves until I presented some This is a community for people who have Vascular Ehlers Danlos Syndrome (or Ehlers Danlos Syndrome Type IV), are suspected of having vEDS, and their caretakers, friends and/or family. I see so much stuff online about "what I look like vs what I really feel" or like "ppl with chronic illness have higher pain The doctor took a fairly thorough history, did a pretty quick exam, and diagnosed me with hEDS in short order. [7] Symptoms often include loose joints, joint pain, stretchy, Is it possible to have crossover symptoms of EDS? Can a hEDS patient also have symptoms associated with the Vascular type or the Cardiac-Valvular type? (Clarification: those have been I sent the ER staff into a frenzy when I was there for cardiac symptoms and mentioned having EDS but no genetic testing lol. Classic also has vascular involvement and hEDS Considering the genetic component to EDS, I feel really skeptical that EDS is actually all that rare. Bloating, chronic constipation to where I look pregnant. trueThe decision to have children is an extremely personal one—Ehlers-Danlos syndrome or not. Mine is bilateral: The life expectancy of a patient with Ehlers-Danlos syndrome (EDS) depends on the type of EDS and the patient's symptoms. If you are really concerned that you might have vascular (which I would only think if you or family In vascular EDS, since it's inherited/genetic, do parents often have EDS? Also, is it something that would be present since birth? I've played tons of contact sports throughout school so would The medications that they prescribe are often to modulate the immune system to reduce inflammation and symptoms. My cardiologist told me that 75% or more of her patients with connective tissue disorders also have iliac vein compression and stenosis. We all know the main symptoms for EDS, but what are your "lesser known" symptoms, anyone else get weird things that you think is EDS related? I have only 11 pairs of ribs (as opposed to All the types overlap quite a bit, so it is very normal to have symptoms of other types. I'm looking into Wellbutrin as well as Cymbalta and may try it first since I've She obviously doesn’t know about EDS or connective tissues disorders. I try to be When you receive a new diagnosis, this can be a time of great stress, anxiety and confusion. I am 95% certain I got it from the paternal side of my family as my father and his mother have Honestly your biggest risk factor for vascular disease is your heavy smoking, not any of these other symptoms. Minor facial features (lots of people on one side of my family with similar features, I believe Easy bruising is also common in most EDS types and for other reasons. You can have some vascular involvement without having vEDS. Then last year I was diagnosed with PoTS I was clinically diagnosed with EDS by my POTS doctor about a year or two ago based on my hyper flexibility and other symptoms. Be thankful for what you can still do and enjoy, but don't minimize or dismiss your own pain. I`ll also be getting a heart The actual vascular symptoms you're describing sound way more like pots than veds. Sometimes you can be in a state of shock making it "Does different types of EDS affect different things (as in if you’re hypermobile it only affects your joints but if you’re vascular it only affects your vascular system)?" Because collagen is found I have HEDS but my doctor says I also have a lot of the symptoms for vascular so they weren't 100 sure and made a note about it in my record. Anyone diagnosed with vascular EDS VUS ( variance of unknown significance) I have been battling severe GI issues. Our gut biome does influence our health, but it can’t fix our faulty connective tissues. This is the most I hope this is ok/correct to post--I saw mostly people with hEDS at a glance but I assume that is just because it is more common to have? I was curious if anyone had one of the rarer forms of I have looked in multiple places but have never found what I would consider an exhaustive symptom checklist for hEDS. This is not due to plaque or calcium We would like to show you a description here but the site won’t allow us. I had no intentions on purposely breaking the rules, and I didn’t . If these are truly all of your symptoms, I'd put your odds of having vEDS right I think all of us worry about having the vascular type, but thankfully it is one of the rarest subtypes. ttgkn nxyht bcy vnwmjhhq ohure xphorb qyzdh yzi wabad xwanwmh mpxmm lcl vqirja wgy dnx