July 21, 2012 at 6:47 am #274
My question is about hyper mobility! I understand that one can be hyper-mobile without having Ehler’s Danlos: simply flexible.. but I am wondering how subjective the Beighton scale is for testing EDS and diagnosing potential collagen or connective tissue problems… if in fact EDS is ruled out and one finds themselves still sliding out of place in pain and such… how can that be explained further- if at all?? -particularly involving other dysautonomic dilemmas?? Buellar… Beighton… anyone?? (maybe it’s a bit of a stretch- lol, but hear me out if you can)
I’m 24 years old, female and bendy from the beginning, not grossly, but basically never had to work up to being flexible as it came naturally (which was great- until I started having more and more pain: from ‘growing pains’ to torn ligaments or just surprise- who knows why that hurts)
when I do a self test for Beighton scale at home, I honestly think I am at LEAST a 5 out of 9… if my hands aren’t entirely locked up at the time, I am capable of 9/9- yet when I showed a doctor these findings- she dismissed EDS for me because I needed to “push” (assisting with my other hand) too much for there to be a connective tissue issue, that my skin too, was not grossly marked as scared or flimsy’ <-- wonderful news yes! but I'm back in the grey areas again, so please forgive my feelings of dismay despite the new bill of health (I am truly grateful for the health that I have, my problem is that in putting my best foot forward and being thankful here, I still am sliding out of place throughout the day- which does have it's set backs- I'm not trying to say that my struggling is in anyway comparable to EDS patients, but I am looking for answers to some of your same questions I sure) 🙁 The more I think about it, the more I feel like I do not have EDS- the doctor did take a lot of specific measurements and had knowledge of EDS variations to begin with- YAY! - but that still doesn't change the fact that I have problems of the zebra kind.... I have chiari malformation, fatigue, joint pain, instability/ orthostatic issues... and a few other dysautonomic traits (many of which can be explained by chiari malformation alone... but hey- my flexibility is the part that I happen to be curious about lately so indulge me if your able) <-- Disclaimer: These questions may have something to do with the fact that an EDS diagnosis allows me to procrastinate longer on decompression brain surgery because of the changes it would call for in details of the procedure. Anywhooo.. My doctor told me I am hyper mobile, but shouldn't worry because it is not EDS. (to which I think- how lucky I am 🙂 but confused further.. can't help worrying when I feel like a kneeless bobble head most of the time- sorry- it just is what it is). I am wondering if my brain could be tricking my body into feeling and acting this way, allowing these instability issues.. sounds crazy I know, I'll explain how I got there. By the by: my medical record is confusing to me and my doctors. BUT- I know that my Chiari Malformation and consequent complications trickle down the pathways of normal human functioning to interfere with just about everything.. its a slipper slope starting with my cerebellum (pun intended)... I have had the chiari diagnosis since 2006, and since that time, checked for changes in my chiari, along with anything else that could be hiding (NO LUPUS, no lymes, no addisons, no tumor...) Just in this last year I was put on hormones to combat fatigue and whatever showed up- or in my case was missing from my blood work.. I responded very well to florinef and synthroid... so I'm guessing that could confirm a type of dysautonomia being part of my problem, perhaps from the CSF flow issues caused by my Chiari?? I have been told I do not have POTS, but I feel potsy a lot (again, not trying to be insensitive to those that actually have a diagnosis- just want answers). With the weather heating up, I find that ALL of my symptoms are exacerbated- and the florinef isn't helping the way it was the first 3 months I was on it (took about 1 month to kick in- then 2-3 good months.. now back to more fog, true vertigo, HYPOTENSION, double vision, loose joints and floppy popping of my ligaments... what gives!?? did the placebo wear off, did my body build up a tolerance?? uggg- I really was feeling fancy- too good to be true good! then boom- useless) So the Chiari can explain some of this stuff... but not all. My CRAZY ideas... WHAT IF, due to the fact that my body is always in some kind of fight or flight state.. and miscommunicating with itself - those feedback mechanisms are conflicting and wonky all the time too... perhaps I am becoming 'symptomatic' of EDS even though my collagen is great? does that even make sense? IE: I notice I am more susceptible to my joints sliding out of safe range in moments of stressed or excitement (good and bad) maybe when I have that smallest little kick of adrenalin or endorphins.. it trickles down to my ligaments and nerves...making them forget they dont bend that way lol... maybe triggering nerve pain/movement responses that I dont necessarily need or have?.. is that possible?? I was remembering my high school experiences.. and how during dance team tryouts, I was always 10 times more flexible in auditions or preformanses than I was any other day, because of the adrenalin... well I know that my adrenals are off (because of Chiari?) - could this be causing a trickling effect to the extend of EDS like problems? which came first... the cranial instability or the chiari malformation? ... which came first my trust issues with my doctors... or my trust issues with my body... or does my body have trust issues with me?? All I know is that I have Doctor fog on top of Brain fog on top of... oh yea.. I forgot. Thank YOU for reading!!! ANNYY input is soo very welcome and appreciated! <3 ~NinaJuly 21, 2012 at 7:09 am #2648
just realized this posted under the latest research,… I was searching here before I posted in case someone else had already answered this! oy vey!! where do I put this and how do I get it there???July 21, 2012 at 5:44 pm #2651
Thanks for the laugh at the end!
You don’t mention the Brighton Scale (or Brighton Criteria, as it’s also known), which I think is the most recent measure, as it includes autonomic involvement. I don’t have stretchy skin (although it does break down easy) and have hardly any hypermobility (only knees and ankles), yet I was diagnosed EDS III, in 2010 using the Brighton Scale. I had already been assessed a couple of years previous, using the old Beighton scale, which looks at hypermobility only and was told I didn’t have it.
I think the Brighton Scale says if you have 1 of the major criteria, one of which can be arthralgia (pain in the joints) for >3 months PLUS 2 minor criteria, so if you also have ‘autonomic’ involvement and yet didn’t score too high on the Beighton scale, you may still be diagnosed positive using this new Brighton Scale, see if your consultant is aware of it. They are saying that Joint Hypermobilty Syndrome is indistinguishable from Ehlers-Danlos Syndrome, so it could be the same thing?
Copy and paste this link to see an article on the Department of Works and Pensions website which includes details of The Brighton Scale:
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!July 23, 2012 at 3:33 am #2656
Hi Barbara! Thank you so much for reading and more for responding!! I wrote this just trying to process the latest doctor visit I had had, so I understand it reads a bit awkward, as I was quite shocked that my geneticist appointment gave me more questions than answers. (on top of feeling guilty that I was disappointed in the GOOD news and worse for asking actual EDSers about what to do next!)
I really appreciate your input here, and find what your saying so encouraging! I do not think that my specialist used the Brighton Criteria which would be interesting to inquire further about! (if only my insurance wasn’t such an obstacle course) It is amazing of you to tell me about your specific diagnosis journey- and very reassuring knowing you found answers eventually!
At this point in my diagnosis, I am not stressing the label so much as I am the individualized evaluation of whatever is going on with me. I’m recalling my experience with having POTS symptoms- went to the Cardiologist, told I did NOT have pots, but still put on florinef by my GP- and felt better! I didn’t worry so much that I don’t have a label of Pots, because I at least have results with the treatment and get to get on with living (well on good days)
I am trying to get my life together and move forward with as little complications as possible. (IE: I need decompression surgery, and just want to be sure that the right surgeon for me will be doing the right procedure for me) It is documented that some EDS patients that have Chiari surgery need a carefully modified procedure- so it is important for me to know if my hyper-mobility is causing CCI or something like that- even if it isn’t called EDS by my doctors- as long as they check- at least it would be one less thing to worry about for me come BRAIN surgery! (of course when I bring this up to a neuro they usually roll their eyes before I am able to cite my sources because very few will look below the neck as it is not their specialty)
Thank you for sharing your opinion- just reading your info makes me feel validated in my tenacity, you are juggling so much yourself, my heart really goes out to you and that makes me that much more appreciative of your precious time and energy!! (some days it takes everything in me to not say “I quit- hypochondria is a real disorder too- why not just let the doctor cut without asking more questions”) The truth is that I have strong misgivings, and they stem from my real experiences with medicine and with my family’s medical history of “being odd” or “unlucky” … so if EDS is causing my Chiari, or even if Chiari is just running a muck without the extra complication of connective tissue disorder- I still want to be confidant in my surgeon and realistic about surgical outcomes for my body.
I want to make this life changing, difficult decision with as much information as possible, so that it is an informed decision and I know what my risks are. I do not wish to spread fear around further, but I do want to advocate that when dealing with ‘rare’ or ‘uncommon’ disorders- maybe finding a specialist is also ‘rare’ and uncommon- your sharing reminds me of that too! I do believe it is possible to find answers! At times, I wish I was not a curious patient, that I could just trust that my neurosurgeon knows best- he probably does, he is a miracle worker for everyone else (but he has been the opposite for me in the past- so one can understand my hesitations). I am strangely comforted by details of both the problems and the solutions to them, so I will continue to ask questions because that’s what works for me. I can’t change who I am.
Seeing that you struggle with chiari 0 makes me feel that you know a lot about the grey areas of this stuff and can empathize. I am so sorry to hear that you have so much going on- I wish you all the best!! I am so hopeful for all of us here- especially finding that we care about each other enough to speak up or discuss controversy (across ponds even!!). Your story is helping me immensely, maybe mine will help someone else later… I will do anything to not feel like a guinea pig; or have someone else go through unnecessary struggles when the latest research could have better and perhaps easier answers..(smile- DRISCOLL even!) thanks again!! and thank you Dr. Diana for the place to chat! (again- can I move this topic to Chiari/eds or something so it’s not under latest research??)July 23, 2012 at 6:53 am #2657
Surgery has not been an option for me in this country and, with the housing market being as it is I’ve been unable to sell my property in order to get to the USA for the surgery, so, I’ve had to look for other treatment methods.
Also, as frustrated as I have been regarding this health condition and everything having gone against me (the mathematical odds don’t make sense, you’d expect perhaps 50/50 i.e. some things go in my favour, some things don’t, WELL, I’d say 95% has gone against me, I’ve had to BATTLE for everything, it hasn’t made sense) I believe, oddly enough, that everything happens for a reason. In the absence of accessible, fully knowledgable people, out there for us, I like many, have had no option but to spend many, many years researching and being my own advocate.
This persistent battling has armed me with a vast knowledge of the interior structure and workings of the human body, certainly the head and neck, without which I would never have been able to manage my condition as well. Also, with all this (horrible!!!) experience and wonderful knowledge, it has armed me with the tools to educate the medical staff out there (albeit in a tongue-in-cheek way) and to help other people, via these forums, not to have to suffer as much (I hope). I think each of us may hold a piece of this very valuable puzzle.
Dr Diana Driscoll, like us, has had to do the same both for herself and her family, who have been affected in a really bad way. Dr D has had the wonderful advantage of already having a medical background and has made leaps and bounds into solving this mysterious group of conditions, being able to fully discuss the intricacies with experts in other areas and listen to input and feedback from fellow sufferers.
If medical help had have come easily, we would all be ‘just taking the tablets’, masking the symptoms, which is what modern medicine does, so underneath it all, not getting any better. As it stands, ‘Necessity being the mother of Invention’ Dr Diana has found ways, to REVERSE the condition quite somewhat, by finding the underlying set of causes. I am certain that it will be a basis for a cure for MANY neurological disorders that have, until this present date remained progressive and uncurable. I’ve said it before and will say it again, Dr D deserves a merit of the highest worth!
I have only just started down my ‘journey for a cure’, so I cannot comment with any strength on it’s efficacy but I now have HOPE for my future, where there once was none.
Have you watched Dr D’s videos, they are truely inspirational. If you haven’t, I would recommend you watch the two she has made on her symptoms first, these put you in no shadow of a doubt that she has experienced very similar to us all. You will have to copy and paste these into your browser as the links don’t work:
(UK)July 23, 2012 at 7:22 am #2658
What I meant to say here (but totally forgot!!!) was that your condition may be resolvable without such drastic brain surgery, if you get your vitamin and minerals built back up, your hydrocephalus (excess fluid above the brain) reduced and your mast cells under control, then if necessay a CCSVI procedure. You need to familiarise yourself with The Driscoll Theory first.
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