tag:blogger.com,1999:blog-7121366373034963667.post50954131637573336..comments2023-12-21T07:16:44.979+00:00Comments on The Myasthenia Kid .....: If you think you have Ehler Danlos Syndrome...The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-7121366373034963667.post-46672861140943697112014-05-13T14:14:26.620+01:002014-05-13T14:14:26.620+01:00Lol Skye!
I've had some help from an EDS frie...Lol Skye!<br /><br />I've had some help from an EDS friend and she's provided me with a magnificent link! So I'm hoping it will help you lots! Its a proper medical journal article. I have printed it off to give my own consultant.<br /><br />Rach xxThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-57737181099855624502014-05-13T14:08:55.794+01:002014-05-13T14:08:55.794+01:00Sorry stupid phone lol it was ment to say and than...Sorry stupid phone lol it was ment to say and thanks heaps* not thanks each lolskyescraper1982https://www.blogger.com/profile/13562673343048652231noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-27745713963321996602014-05-13T07:05:23.249+01:002014-05-13T07:05:23.249+01:00No worries lol and thanks each :-)No worries lol and thanks each :-)skyescraper1982https://www.blogger.com/profile/13562673343048652231noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-64736621968672511512014-05-13T04:58:55.232+01:002014-05-13T04:58:55.232+01:00Hi Skye,
going to do a post next Monday specifica...Hi Skye,<br /><br />going to do a post next Monday specifically for you, with proper links etc to help you.<br /><br />It's 5am here in the UK so not firing on all cylinders just yet.<br /><br />RachThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-41797536528419129832014-05-13T04:57:19.924+01:002014-05-13T04:57:19.924+01:00Hiya Skye,
so lovely to hear from you again. I ha...Hiya Skye, <br />so lovely to hear from you again. I have included a few links in this post to try and make your research easier and hopefully point you in the right direction!<br />http://www.ehlers-danlos.org/images/medical_information_page/Information%20for%20GPs.pdf this is a link to a printable sheet so you can take it with you to appointments.<br />http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome this link has a section at the bottom where you can look at each type of EDS.<br />http://www.ednf.org/eds-types again this is a good website and hopefully it will help you.<br />The medical profession is divided on whether or not there is crossover between types of EDS. However the more open minded ones accept that you may have predominate signs of one type whilst having signs of another.<br />If there is anything I can do to help information wise. Please just contact me here or via my wordpress blog (same blog just different platform) www.themyastheniakid.com<br /><br />I will always be happy to help<br /><br />Rach xThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-32076296269940901202014-05-13T04:18:05.293+01:002014-05-13T04:18:05.293+01:00I'm sorry that I didn't get to finish what...I'm sorry that I didn't get to finish what I was writing yesterday, I only have my phone to do research on and write to you as well lol I find it quite time consuming researching and writing on my phone and so I got held up dealing with my kids, when duty calls and all of that lol :-) sorry again.<br />The rest of what I was going to say yesterday is that I haven't had a chance yet to research all the different types of EDS properly, I may cross over into other types of EDS like the classic type. I thank you very much for your input as I hadn't come across any information stating that you can have cross overs into other types of EDS so your latest blog was an real eye opener so i thank you very much. <br />Do you know if you can have more than one cross over? <br />I read something about base line symptoms in the majority of cases being the same, I haven't yet been able to locate a site that lists the base symptoms, but I am not going to give up on finding the information to help build my own and my families medical case.<br />I thank you so much for your time in responding to my msgs :-)skyescraper1982https://www.blogger.com/profile/13562673343048652231noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-90028152789843310832014-05-11T18:38:02.406+01:002014-05-11T18:38:02.406+01:00Sorry I need to correct, I have crossover into cla...Sorry I need to correct, I have crossover into classical EDS. Sorry my mistake.<br />Rach xThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-11151910029954379762014-05-11T18:36:27.312+01:002014-05-11T18:36:27.312+01:00Hiya Skyscraper 1982,
Thank you so much for taking...Hiya Skyscraper 1982,<br />Thank you so much for taking the time to leave your comments. I always love to hear from people who have read my blog and enjoyed a post or found it useful. I also like hearing about individuals stories as well because it validates how very hard it is to get taken seriously and get a diagnosis.<br />Hughes syndrome / sticky blood also can be found with dysautonomia and dysautonomia also runs with EDS so that could be a clue behind your stroke possibly but obviously I am not a doctor.<br />Your families EDS sounds more like Classical EDS as they have the blue whites of the eye. I do as well but I have type 3 with some cross over into 4. At least there is a genetic test for EDS Classical type. It does sound like there is cross over into hypermobility as EDS 3 tends to be the one that causes gastro issues.<br />Yes once you have a diagnosis for you and your family I would agree the kids teachers need to know as they could have issues with fatigue and contact sports.<br />Thanks again for commenting and please come back and let me know how you've got on.<br />Rach xThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-9905463113384313992014-05-11T18:06:15.306+01:002014-05-11T18:06:15.306+01:00P.S. in one article I read it suggested that anyon...P.S. in one article I read it suggested that anyone with EDS should get an medical alert bracelet saying so and lots suggested that if you have children with EDS that the child's educators should be made aware of the condition and be given information on the child's EDS too. Thanks again :-) skyescraper1982https://www.blogger.com/profile/13562673343048652231noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-61130450489149607282014-05-11T18:05:09.657+01:002014-05-11T18:05:09.657+01:00I already have an appointment to see an neurologis...I already have an appointment to see an neurologist in July as an result of the stroke and he can get some of the test for some of the symptoms done and your blog suggests an rheumatoligist so I'll get onto that too, I have a re-feral for one of those somewhere. I think when I see my GP on Thursday week that I will ask for a re-feral to an genetisit too.<br />Thank you so much for your blog :-) and the inspiration I need to not take no for an answer. skyescraper1982https://www.blogger.com/profile/13562673343048652231noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-12660805106669330462014-05-11T18:02:09.683+01:002014-05-11T18:02:09.683+01:00Yet another thing I was told was nothing and not t... Yet another thing I was told was nothing and not to worry about when my daughter was born that is also a sign of EDS. My daughter is in so much pain all the time and has many digestive issues and hernia too, as do I. When she grows she can't walk just as I couldn't when I was growing. The list for both of us is pages long and not only applies to the 2of us indicating EDS but also my mother, my almost 18yr old niece who lives with me and as I believed that EDS could only apply to long lumber people I ignorantly ignored when her GP had suggested that maybe my niece is one of the few lucky people that has extra flexibility due to as she spelt it Elars Dandos and that I should look up EDS as being the cause of her problems. I said I remember looking that up as a cause for my daughters blue whites to her eyes and that I thought it only effected people with long limbs (like I said in my ignorance) and the doctor said ah yes that's right, can't be that then...you'd be lucky if it was though. <br />Lucky? A life sentence of pain and premature death yay... more and more on our lists and then I read an article about an woman in Tasmania who has EDS and 2daughters with EDS that also have spectrum disorders. So then I look up EDS and spectrum disorders and find that EDS IV the kind that causes strokes for no reason also has an link with Autism Spectrum Disorders and Aspergers Syndrome... I myself have spectrum disorder and so does my 12yr old son, my nieces who live with mes father also did (may he rip) as does his 2 daughters and omg....my brother and son and other niece must have had it too? So I go back through the list again...yep sounds like them too omg and my eldest brother's 2 sons, my nephews omg. So tonight for my whole families sake I started to make page long lists of all that applies to who and your blog has inspired me to push the doctors for answers.skyescraper1982https://www.blogger.com/profile/13562673343048652231noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-10603124472231079642014-05-11T17:59:26.162+01:002014-05-11T17:59:26.162+01:00Thank you for your blog :-) My name is Skye and I ...Thank you for your blog :-) My name is Skye and I am from Australia. Your blog gives me plenty of reasons to find out if I have EDS. The first time that I read about EDS was when my now soon to be 4yr old daughter was born back on the 21-05-2010. She has blue whites to her eyes so when no-one cared or could give me a reason for it I decided to look up reasons on the internet. EDS was one of the things I had discovered could be the cause. I went to the doctors with my huge list of possible reasons for her whites to be blue, got an referral to an pediatrician and he said it's more likely to be nothing at all that he has seen heaps of kids with their whites blue and haven't been dwarfs. I stupidly dismissed EDS as being possible due to her really short arms and legs, I had at the time briefly thought about it applying to myself but ignorantly ignored the fact as finding out why my babies eyes whites were blue was way more important at the time. The article I had read was in medical mumbo jumbo and I missed what alot of it was saying. <br />My birthday was on the 3-may and the next day I had a stroke...my second one in less than 18months. Doctor can't find a reason or a cause...I start thinking about my bad back and how my almost 4yr old had kneed me in the back on the morning of my birthday and how my head had felt extremely strange but that I could amazingly walk quite well for a change. Could my back have caused some kind of nerve thing to cause what seemed like an stroke? I thought to myself. So I looked up back problems and strokes. It came up with EDS.<br />This time I first read about each part on Wikipedia and then cross referenced it all with government medical web sites.<br />Turns out you don't have to have long limbs (although i do) to have EDS. People with short limbs can have EDS too. Both my daughter and myself have sacral dimples and therefore could both have tethered spinal cords.skyescraper1982https://www.blogger.com/profile/13562673343048652231noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-46114477373681432142014-03-04T18:03:01.945+00:002014-03-04T18:03:01.945+00:00Thank you xThank you xThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-529383866738965962011-10-11T21:37:11.236+01:002011-10-11T21:37:11.236+01:00Excellent, well done!
Xo
CloverExcellent, well done!<br /><br /><br />Xo<br />CloverClovehttps://www.blogger.com/profile/08876657521944482699noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-12523084971550437762011-10-11T21:36:35.899+01:002011-10-11T21:36:35.899+01:00That is a great piece!! Well done!That is a great piece!! Well done!Clovehttps://www.blogger.com/profile/08876657521944482699noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-52597082300562501352011-10-07T09:04:24.872+01:002011-10-07T09:04:24.872+01:00sorry guys its been a tough few weeks and that pos...sorry guys its been a tough few weeks and that post really took it out of me.<br /><br />Hope you are all ok xxThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-21771590719216881672011-10-03T13:50:56.652+01:002011-10-03T13:50:56.652+01:00great piece rachel.
hope your ok, not posting for...great piece rachel.<br /><br />hope your ok, not posting for a couple of weeks, usually means a bad time, had a flare up a few weeks ago so know how it is. <br /><br />take care. xxxxemhttps://www.blogger.com/profile/14196652412958890367noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-45461462341124282042011-09-19T10:26:31.218+01:002011-09-19T10:26:31.218+01:00Hi Rachel .. you're doing what you can .. and ...Hi Rachel .. you're doing what you can .. and by posting - people can at least see some of the challenges.<br /><br />Good luck to both of you .. with thoughts HilaryHilary Melton-Butcherhttps://www.blogger.com/profile/17596532480645510678noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-67887667362778651642011-09-18T20:32:20.416+01:002011-09-18T20:32:20.416+01:00Great post Rach!
Must have taken you ages to typ...Great post Rach! <br /><br />Must have taken you ages to types all that lot up! It's perfect x Love and hugs Minxy xxxMinxhttps://www.blogger.com/profile/00369480179743569838noreply@blogger.com