tili1
New Member
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Post by tili1 on Aug 3, 2014 1:21:45 GMT -5
Hello all I have been diagnosed with Veda in the year 2000.I know a lot about this disease.I just moved ba k to Toronot after living in Israel for 10 years.Can anyone refer me to a good doctor that knows what Veds is?
Thank you Tal
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Post by Tal Levi on Aug 4, 2014 22:30:28 GMT -5
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Post by daisy10 on Aug 6, 2014 17:46:01 GMT -5
Hi to all. My name is Cheryl and I'm a 40 year old mother of two amazing boys aged 15 (Riley) and 13 (Aidan). Oh yeah, I have FINALLY been diagnosed this past February, with EDS - Hypermobility Type. I am waiting for blood work results, that were sent to Pennsylvania, to determine whether or not I also have Classic EDS, as well.
Looking back upon my life and reading other people's life stories, I can now understand how we are left undiagnosed for so long. Understanding doesn't mean it's right. Education in both the medical field and publicly are essential for earlier intervention and assistance for quality of life.
I wasn't a typical baby. I shuffled instead of crawled. I didn't walk until I was almost two years old. My parent's and other family members said it was because I was a chubby baby. I was chubby because I was fed Carnation milk and not fed formula, or breastfed. I was clumsy when I was a toddler and kindergarten age, so my parent's enrolled me in gymnastics, where I scared a young girl as she stretched my arms back and they popped out of their shoulder sockets.
I could perform unique "tricks" with my arms and wrists. I was ALWAYS bruised (still am and rarely remember how I received them). My knees started to become a real issue as I hit puberty, as did severe migraines that I can't even count how many hospital visits I've had for (over 250). My right knee has been in a "jones" bandage from my hip, to my ankle. Both plaster and the newer material type. My jaw would lock either open, or closed. Dentist visits were doubly dreaded, as the dentist I had for years never believed me when I said I wasn't frozen, he wouldn't add more and my jaw would regularly lock open. He had to call a registered massage therapist, to relax it and allow it to unlock. That clicking noise? Who doesn't hear that? Oh, most of the population, I never knew that. IBS was something I thought everyone dealt with and I never discussed it with my doctor. Sometimes you wonder if you are a hypochondriac. Others definitely thought that of me.
Seven years ago, I was skating with my boys' and (now ex) husband. I fell on figure skates, which I never grew up wearing, I wore hockey skates. The first time I fell it was only my knees. The second time I fell, I was flying through the sky like superman. I ended up dislocating my shoulder, ripping my bicep completely off the bone and causing a few slap lesions. Long story short, I had two unsuccessful surgeries (they even shortened my ligament) and my shoulder still subluxes while sitting and completely dislocates when leaning over. The pain is excruciating and unbearable at times (I'm sure you all understand what I mean). I also damaged the radial nerve and have no feeling in my left hand, except for my index finger and thumb (same side as shoulder). My left arm is my dominant side.
I went to see a physiatrist when the accident first happened and then again, six and a half years later. I had been through eight surgeons, begging and trying to sell my soul, to get them to attempt to fix my shoulder. They all said there was no way it would work. Not once did they even mention EDS. I was sent back to the physiatrist to come up with a pain management plan. I abused the pain meds over the first three years and went from Tylenol #3, all the way to taking 3-4 80's of OxyContin's a day. There were so many other pain meds tried inbetween. Of course I was double doctoring at the time. Can no longer be done here in Ontario.
The physiatrist (a doctor in physiotherapy) looked at me and said "I'm 90% certain you have EDS and am referring you urgently to a geneticist". I was ecstatic. I had researched all about it years before, but was told by family members that it was all in my head. Proved them wrong (not in a way that anyone wants).
Now I'm on my own trying to figure out how to look after myself. I haven't worked in seven years. I worked in palliative care, with patients in their homes.
I have a wonderful stability support sling for my shoulder. I can't put it on myself. My boys are only here every other week. About four months ago, my hips started dislocating. Not that snapping that is talked about. They come completely out, or out far enough that they cause me to fall to the ground. Does anyone else have this happen to them? If so, what do you do to help you? I have a trochanter belt that keeps them pretty stable, but doesn't stop the aching or shooting pain that occurs every so often.
Sorry if I seemed negative in the previous part, it felt great purging though. First time I have. Besides dealing with EDS (chronic pain sucks, I know so many suffer more than I do and I'm grateful for all I do have in life), I've been watching my boys play all types of competitive sports over the years and enjoying every second. Football only just ended for my oldest and before that was lacrosse for my youngest. Hockey for both in the winter keeps me busy. For years I've been embarrassed and don't usually participate in anything incase any ailments come up, or I'm not able to continue on, if my pain was intense. Most of the time I'm stubborn (I like to say determined now) and push too far, then suffer physically later. I've decided to find my passions in life. I know a few, such as; writing poetry or short stories, mineralogy (I'm joining a rock and mineral group in September), and photography (I have a DSLR and am looking forward to improving my skills at my pace). I have two wonderful male cats, both followed my boys home 9 years ago. We tried to find their owners for a month, but weren't successful. The vet approximated their age to be around 12 now. Their names are "Mushu" and "Mishka". Ok, I'm ending my novella now. If you haven't figured out by now, I talk and write a lot. I will edit myself after this post. I'm sad that others have EDS, but thankful to perhaps learn and/or share about our struggles and successes. Even just about life, perhaps. (I'm off, seriously) if you read this far, you deserve an award.
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sdk
New Member
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Post by sdk on Sept 15, 2014 18:19:22 GMT -5
Hi, My name is Carrie, I was just diagnosed with EDS 3 though I have known I had hypermobile joint syndrome since I was 27, I am now 50. I live with my partner Don and he is extremely supportive. I am currently off work as an x-ray tech and am challenging my disability insurance. Have to go to mediation on thursday, boooooo. I have chronic pain that they thought was fibromyalgia. I have had prolotherapy and botox in trigger points but it didn't last for pain relief and for me was not cost effective. I have been doing Yang style Tai chi for over a year and have found it helpful. I have a great teacher who recovered from complete paralysis with Tai Chi and she is so supportive. I have a doberman named Hunter who is 3 and a half and a big goofy boy. I cant wait to go to Arizona this spring as it is immensely helpful for my pain. I hope with my diagnosis I might get on a better track with my pain. |
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sdk
New Member
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Post by sdk on Sept 15, 2014 18:46:44 GMT -5
Hi, I am from Saskatchewan. My son, age 11, was diagnosed with Ehlers Danlos Hypermobility in July of this year. The Genetisist believes it is from my side of the family. I myself have have problems with my shoulders with dislocating and the more I learn about Ehlers Danlos, the more I see myself having it also. One of my sisters will be seeing the Genetisist next week believed to have Ehlers Danlos.
When my son was diagnosed, it answered a lot of unknowns with his medical since he was born, but it was still a shock.
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Post by Dana Lipka on Oct 7, 2014 23:23:56 GMT -5
Since this is a brand new forum, let's get to know each other a bit. |
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Post by Dana Lipka on Oct 7, 2014 23:31:56 GMT -5
I am from Sooke on Vancouver Island. I was diagnosed with Ehlos Danlos about 9 years ago and never really gave it too much attention. As I am reaching 40 I realize that alot of my health issues may be related. I have had chronic undiagnosed back pain since my early 20's and just recently experienced alot more intestinal issues. I am hoping I can reach out to others and get support and possibly validation as it seems as though my GP doesnt really recognize it as being an issue and makes me feel like I am a hypocondriac for complaining of fatigue due to pain and diverticulitis which has sprung up in the last year. I have been diagnosed with Classic or Type 2 with some vascular issues by my geneticist on the island. Wondering if this will be a place I can ask questions and hear other peoples trials with this condition. Sincerely, Dana
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Post by pILLgrim on Oct 13, 2014 13:14:16 GMT -5
Hi everyone. I'm a 38 year old father of 9 beautiful children, with the 10th due today actually (!). I have been struggling with chronic, debilitating pain (in and around virtually every joint from head to toe) and fatigue, that has gradually gotten worse and worse...and even worse, over the last 16 years, and all the while bouncing from doctor to doctor with the hopes of eventually finding out what the heck in the world is wrong with me. I am a Journeyman Carpenter and high-end Cabinetmaker/furniture maker by trade, but I am no longer able to work in my trade, due mostly to the pain, but the fatigue is a huge contributing factor. On September 26th of this year, I had an appointment with a Rheumatologist, and it was both the absolute best and worst doctor's appointment I've ever had. He diagnosed me with EDS (Hypermobility Type), and the first thing he said to me after a lengthy evaluation of my medical history, the questionnaire paperwork I filled out at his office, and a physical examination, was, "First, I want you to know, you are not crazy, the pain is not all in your head, because I'm sure you've had doctors tell you that." I replied "YES....I sure have!" Then he said, "This is also not fibromyalgia, as might be indicated by your pain diagram. What you have is a genetic disorder called Ehlers-Danlos, and over the years you have done damage to your joints and connective tissues in your line of work that, unfortunately, cannot be reversed...."
In a nutshell, he explained to me that I am not going to get better, there is no cure as it is genetic, and that now that we know what this is that has been plaguing me for so long, we also have to begin the process of dealing with the possibility of my children having inherited this from me, and went on to explain the various steps we now need to go through to explore other complications, and how I can learn to live with this gradual decline into worse debilitating issues. This was so vindicating on the one hand, after years of being treated by doctors like I'm crazy (GRRRRRRRRR!!!), and devastating on the other hand, seeing as I now have little hope of resuming my love affair with woodworking as a means to earn a living. My follow-up appointment with my family GP is this upcoming Friday, and I am praying I don't say anything I may regret that may cause him to want to "dump" me as a patient, as family doctors are very hard to come by.
As a sidenote, The Rheumatologist I saw here in Chilliwack was an absolute Godsend!! His name is Dr. E. Marcus Klaus, and he was the most understanding, compassionate, and knowledgeable doctor I have ever met, and I wish every doctor out there was just like him. If you are in the lower mainland area of BC, and you are struggling with debilitating joint pain or other problems that you or your doctor feel might be worth seeing a Rheumatologist for, try and see this man! Perhaps I am jaded after years of dealing with doctors that are simply modern-day drug-pushers who don't seem to know anything except, "you have pain because you use your body to work. Just take more ibuprofen.......oh, you have this symptom? Here, try this drug.......maybe you should try antidepressants, they *might help......naw, you're fine, you're normal, who knows, maybe it'll just get better.......hmmm, maybe it's a mental illness?.........I think it's fibromyalgia and chronic fatigue. You need antidepressants........", you know how it goes, I'm sure (Doctor, this is not depression, this is growing frustration over your cluelessness while maintaining your 'know-it-all', 'never-wrong' and condescending attitudes while we suffer and have nowhere else to go). But Dr. Klaus has really helped me regain some of my respect for doctors in general....not "faith" in doctors, but respect. Maybe there are more good ones out there like him (?). I may sound bitter, but I am still reeling from the diagnosis, and wondering why it took 16 years of unknowingly destroying my body and my future (and affecting my family's future in so many ways) while seeing more doctors than I could ever count, and all the while being treated like a nut. But I digress.......
I live with my beautiful and incredibly supportive wife of 16 years, and 9 (+1 soon) wonderful children in Chilliwack, BC. My passions and interests include: Praying and getting to know my Saviour more and more by studying God's Word, the Bible (I have been a Christian since 1995, a wretched sinner saved by God's amazing grace, who grew up in a "rough-around-the-edges", VERY non-Christian family, and I am a rough-around-the-edges "work-in-progress" so to speak), my wonderful family that God has blessed me with, woodworking (I have a 30'x40' fully equipped shop I can barely make use of now), hunting (not really a trophy hunter, just a meat hunter for my family (we are unashamedly a fairly carnivorous family), though I'll take a trophy animal happily if it means more food for my family!), and riding quads (the only way I can ascend mountains now, and what a gift it is to be able to get to remote areas where I can hunt game to help feed my family, as well as enjoy the outdoors here in Beautiful British Columbia).
I would love to chat with other EDSers out there, especially in the BC area, and I truly hope that with help from one another, and putting our heads together, and spreading information about EDS out there wherever we can, more will be done to treat EDSers (and all chronic pain/illness sufferers) with more decency and dignity, and hopefully work towards understanding this terrible illness better and how it can be helped. Also very thankful for the opportunity to share my experiences and learn from others. 
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Post by Jumping_Fovie on Mar 6, 2015 3:14:16 GMT -5
Hi!
I'm 42,and live in Peterborough, Ontario. For the last 6 years I have gotten worse and worse, with a family Dr who has that familiar refrain "it is in your head" .
I know have osteoarthritis in my knees, feet and back. My Beighton scope is a 7 (I don't think my elbows are crazy weird, although it sucks to wake up on a morning and have tennis elbow!)
The 7 includes my old ability to place my palms on the floor had been compromised by my stiffened back. I used to literally bend over backwards every morning to crack my back, but alas I now have only one potential feel good back crack - sometimes when laying down I have one itty bitty crack potential. Usually only sheet pain meds when my back is more relaxed. I wish I had appreciated how best it felt at the time! I also wish I appreciated how much can damage it was going to do later on!
I have crohns disease, tmi issues from time to time (currently going through a painful bit and I have to go to the dentist on a couple of weeks, so I hope this lasts only 6 weeks versus 6 months.
I have to lay down with my feet elevated pretty much 24 hours a day - sitting is excruciating and can only tolerate it for a bit and then have to deal with the pain layer. I'm orthostatic intolerant, so that doesn't help either lol.
I can't go get groceries any more, attend my daughters (who sadly scored a Beighton 6) door events or do anything I used to do. My new family Dr believes pain meds are evil (he had actually written that on noted to other health people!) and has taken me of virtually everything that helped with quality of life, hence the laying down so as not to knock out a knee or other weird thing.
Yeah, so that's me. My rheumatologist told me I had osteoarthritis and was hypermobile. When I entered both terms into google, I saw eds 3,and when looking at my list my symptoms I had been keeping track of, it was like a carbon copy. But I recognize getting an official diagnosis will be important.My rheumatologist has never even heard of the Beighton scale, so I need to be looking to someone who is eds aware. I am desperately looking for a doctor around Peterborough, Ontario or Toronto, or anywhere for that matter. Any suggestions would be greatly appreciated!
Good to meet you all, and I am thinking happy, Healthy thoughts for you! I hope you are having a good spoon day.
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Post by Natasha98 on May 25, 2015 20:36:01 GMT -5
Hey guys so my name's Natasha and I've been diagnosed with type 3 EDS as well I've struggled ever since I was a baby with dislocations and breaks and now at 16, feel like an elderly woman! I can't play sports properly and can't be as active as I wish I could be. I experience extreme nausea and other GI problems as well as major vision issues. As of right now I am still trying to sort some other medical conditions out so I can't share those quite yet like those of you who have a few years on me but I hope to figure out the rest of my problems soon enough! Very excited to have found this site because EDS is quite prominent in my life and I am hoping that I does not get any worse, because it's certainly been progressing these past few years. Hope my account gets activate soon so I'll be able to become a frequent user Byee
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Post by Laura on Aug 6, 2015 1:38:15 GMT -5
Hi Everyone, My name is Laura. I'm 32 years old and currently residing in Georgetown Ontario with my husband and 3 dogs (2 wiener dogs, Schnitzel & Honey and Jack Russell, Cher). Currently I'm waiting for confirmation of EDS type 3 diagnosis from a genetic specialist/EDS expert at Mt. Sinai hospital. It looks like it will take up to 11 months to be seen, so I'm trying to find another option in the meantime. I've been searching for answers to a multitude of medical issues and rare/odd ball conditions for which doctors have no answers (except that it isn't actually happening to me). Funny how as soon as they don't know the answer, ego takes over and they blame you or accuse you of making it up so they don't feel incompetent My list of EDS symptoms could fill a page or two, but some issues include: hypermobility, severe fatigue, fibro, major gastro issues (severe spasming/pain, GERD, hiatal hernia etc), TMJ, osteopenia, major SI joint/back issues (back neck pop out of place regularly, difficulty healing, soft skin, neurogenic pain, insomnia, chest pain, mother is hypermobile (labours were 8hrs, 1hr and 15min and 45min + hematoma with me) and on and on. I was taken off work indefinitely in 2008. I miss my job terribly- the only thing I can do for an hour or two a week is volunteer as a therapy dog handler with special needs kids. I love it- it has given me purpose again. My other major issue is chronic kidney stones. I have seen others mention them with respect to EDS, but no hard evidence of cause and effect. They also find that stones take months to pass and cause serious pain, even with tiny ones. Though I haven't been formally diagnosed yet, I'm pretty sure EDS is what's going on after months of research. When I read other people's life stories with EDS, it's like reading my own life story... Kinda creepy, but reassuring that I'm not alone. I'm looking forward to finally being able to talk to people who understand the complexity of this disorder and how you must live life moment to moment- cause you never know how you're going to be from day to day. |
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Post by Laura on Aug 6, 2015 1:55:52 GMT -5
Hi Anna, Quick note to you- what your doctor told you about EDS not being a billable diagnosis in Canada is a load of crap. I worked at a doctors office for over 6 years doing billing and there was no such thing a non billable diagnosis. When a doctor assesses you, they bill OHIP by charging an assessment fee (i.e. A007) and then they must put in a three digit diagnosis code. The 3 digit code tells OHIP the general idea of why you were seen by that doctor. There are many many codes to choose from. While there may not be a 3 digit code that is specifically labelled EDS or JHS, they can choose from many other options to describe what the issue is. Code 788 for example- as far as I remember it represents muscoloskeletal issues which would be fine to use for EDS. The doctor is either brushing you off with an excuse so they don't have to treat you, or they are incompetent in how OHIP billing works. Either way it's a load of crap. Just wanted to let you know so you don't get yourself stressed out that no one can help you because it's not a "billable diagnosis". Unreal these doctors. Hi, My name is Anna and my G.P agrees that I most likely have JHS but he also told me that JHS is not a billable diagnosis in Ontario. So what to do now? If I push for the diagnosis what really changes? My mother and grandmother both were hypermobile, and I am sure there were others in the family tree. I am not as 'bendy" as my mother and grandmother were, but still have a lot of health issues that I believe to be part of JHS. My mother died in her early 50's from heart attack following surgery for Hiatal Hernia. I see what I believe are signs that my children and my grandchildren have some of JHS issues. My children would not want to know anything about this and would deny that it is even possible. If I can get a referal and I am diagnosed what does that really do for me or my kids and grandkids? is it really worth the fight? |
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Post by Laura on Aug 6, 2015 1:58:41 GMT -5
Hi Again, I'm waiting for the admin's to approve my account- just realized my entry isn't linked to my profile.. Whoops. Anyway, my profile name will be Laileyou. I'll try to repost under my actual account once it's active. L Hi Everyone, My name is Laura. I'm 32 years old and currently residing in Georgetown Ontario with my husband and 3 dogs (2 wiener dogs, Schnitzel & Honey and Jack Russell, Cher). Currently I'm waiting for confirmation of EDS type 3 diagnosis from a genetic specialist/EDS expert at Mt. Sinai hospital. It looks like it will take up to 11 months to be seen, so I'm trying to find another option in the meantime. I've been searching for answers to a multitude of medical issues and rare/odd ball conditions for which doctors have no answers (except that it isn't actually happening to me). Funny how as soon as they don't know the answer, ego takes over and they blame you or accuse you of making it up so they don't feel incompetent My list of EDS symptoms could fill a page or two, but some issues include: hypermobility, severe fatigue, fibro, major gastro issues (severe spasming/pain, GERD, hiatal hernia etc), TMJ, osteopenia, major SI joint/back issues (back neck pop out of place regularly, difficulty healing, soft skin, neurogenic pain, insomnia, chest pain, mother is hypermobile (labours were 8hrs, 1hr and 15min and 45min + hematoma with me) and on and on. I was taken off work indefinitely in 2008. I miss my job terribly- the only thing I can do for an hour or two a week is volunteer as a therapy dog handler with special needs kids. I love it- it has given me purpose again. My other major issue is chronic kidney stones. I have seen others mention them with respect to EDS, but no hard evidence of cause and effect. They also find that stones take months to pass and cause serious pain, even with tiny ones. Though I haven't been formally diagnosed yet, I'm pretty sure EDS is what's going on after months of research. When I read other people's life stories with EDS, it's like reading my own life story... Kinda creepy, but reassuring that I'm not alone. I'm looking forward to finally being able to talk to people who understand the complexity of this disorder and how you must live life moment to moment- cause you never know how you're going to be from day to day. |
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Post by cupcakemomma on Aug 10, 2015 1:15:45 GMT -5
Hi, I am so glad I found this site I was dx 2.5 years ago with hyperpots, which then lead me down a wonderful road of being tested for everything! To date, I have confirmed diagnosis'of Hyperpots, (my hr is usually sitting anywhere from 120 and up, and no is low...lovely dizziness,headaches,insomnia.. Aahh,the life...lol) Barrett's Esophagus, Mast Cell Activation, and then the specialist is 100% certain of EDS, but I have been shuffled to another specialist to confirm the type. Right now sitting at hyper mobility, but he is stuck between classic and hyper... Other than that, I wake up every morning, kiss my 5 beautiful children, and just try to get through the day. I have been told that I make having an invisible illness look like a piece of cake, however these are those people who don't see me quivering, just trying to get out of bed, or hardly able to shower without sitting, or one quick turn of my body throws my back and neck right out of joint for weeks... Very tirering trying to be "normal" |
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