NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Can EDS be triggered by a fall?
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Barbara.
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December 27, 2014 at 5:07 am #762
Brenda
ParticipantHello Members
i’m glad I found this website with your stories. Dr Diana is an inspiration and looks extremely healthy so it was a surprise to learn that she has also has EDS. She illustrates the problem of hidden illness because if you look good, people assume you are well.
Just over a year ago I tripped and hit my head on a door at home. It was a moderate blow to the middle of my forehead which didn’t cause much bruising but it has had life-changing consequences for me, causing insomnia, neck and left shoulder pain, headaches, a feeling that my neck can’t support my head, brain fog and racing heartbeat when I lie down or stand up. Any travel feels life-threatening and causes increased insomnia so my life is on hold.
I have seen 2 Neurosurgeons who have told me that their MRI scans showed an injury (retrolisthesis) at C3/C4 which is causing a little instability but they don’t seem to understand how unstable my neck and head are and the neurological consequences of this instability. I recently had an upright CCJ scan privately which showed cerebellar ectopia and a Chiari 0 but my Neurosurgeon doesn’t seem to want to comment on this.
I have never been diagnosed with hypermobility although it is in my family but I have always had allergies and 4 months before my fall I had a dental implant. I wondered if this made my neck weaker and more prone to injury before I hit my head and have tested positively for a titanium allergy. I have also been told that my blood has a very low level of salt and that there is a significant problem with the mineral base in my body.
Can anyone thow any light on any of this? I suspect that I may have an undiagnosed connective tissue disorder as well as the injury and that this is making my symptoms much worse than doctors can understand. Does anyone know what sort of doctor I need to see and how to get the urgent help I need here in the UK if possible?
I wish you all good health and happiness in 2015.
Brenda
December 28, 2014 at 12:40 pm #5189Dr. Diana
KeymasterGreat question, Brenda! I hear about trauma (and illness) causing the sudden onset of symptoms of hypermobility (the same thing happened to me — twice!). I call this “acquired laxity”, and there is absolutely no mention of it in the published literature. I believe this is a huge oversight, and discuss the potential causes in my book. Welcome to the forum, and our “club”. 😉
December 28, 2014 at 1:37 pm #5190Brenda
ParticipantThanks for reply Dr Diana.
I will purchase your book on Amazon UK so that I can pay in sterling and look forward to reading it.
In the meantime, do you have any ideas about convincing doctors in the UK that I need urgent help with this head/neck instability problem? I feel as though I am at high risk because of brain stem compression and the chiari 0 causing a CSF blockage and excruciating pain but nobody seems to understand my symptoms or can advise me what to do to give me some quality of life. Do you have any contacts here?
Best wishes
Brenda
December 28, 2014 at 11:48 pm #5191Dr. Diana
KeymasterBrenda, I hope the book can guide you as you reach out to your doctors. I will message you about potential contacts. 😉
December 29, 2014 at 3:22 am #5192Brenda
ParticipantHi again Dr Diana
I tried to order your book on Amazon Uk but they don’t have the updated version yet. Is there much difference in the 2012 version? If so, would I be better off ordering it via your website and paying in dollars or ordering via the UK website?
Thank you and I look forward to hearing about any contacts you have in the UK.
Kind regards
Brenda
December 29, 2014 at 12:04 pm #5193Dr. Diana
KeymasterHi Brenda, Yes, there are some BIG differences between the two versions (which is why I discontinued the first). You can buy the book with your credit card or PayPal here: http://prettyill.com/the_driscoll_theory (does that work OK for my friends across the pond?). 😉
December 31, 2014 at 12:21 pm #5195Barbara
ParticipantHello Members
i’m glad I found this website with your stories. Dr Diana is an inspiration and looks extremely healthy so it was a surprise to learn that she has also has EDS. She illustrates the problem of hidden illness because if you look good, people assume you are well.
Just over a year ago I tripped and hit my head on a door at home. It was a moderate blow to the middle of my forehead which didn’t cause much bruising but it has had life-changing consequences for me, causing insomnia, neck and left shoulder pain, headaches, a feeling that my neck can’t support my head, brain fog and racing heartbeat when I lie down or stand up. Any travel feels life-threatening and causes increased insomnia so my life is on hold.
I have seen 2 Neurosurgeons who have told me that their MRI scans showed an injury (retrolisthesis) at C3/C4 which is causing a little instability but they don’t seem to understand how unstable my neck and head are and the neurological consequences of this instability. I recently had an upright CCJ scan privately which showed cerebellar ectopia and a Chiari 0 but my Neurosurgeon doesn’t seem to want to comment on this.
I have never been diagnosed with hypermobility although it is in my family but I have always had allergies and 4 months before my fall I had a dental implant. I wondered if this made my neck weaker and more prone to injury before I hit my head and have tested positively for a titanium allergy. I have also been told that my blood has a very low level of salt and that there is a significant problem with the mineral base in my body.
Can anyone thow any light on any of this? I suspect that I may have an undiagnosed connective tissue disorder as well as the injury and that this is making my symptoms much worse than doctors can understand. Does anyone know what sort of doctor I need to see and how to get the urgent help I need here in the UK if possible?
I wish you all good health and happiness in 2015.
Brenda
Hi Brenda,
Yes, that’s one of the things that stood out to me when I first stumbled on Dr Diana’s videos – how well she was doing, standing up whilst she demonstrated her discoveries – I was amazed!Sorry I cannot answer more personally but I am snowed under with tasks and devoid of time and energy at this moment, so I’ve listed below a few of my posts, talking about my accident and the progression of symptoms, which you may find useful.
Here’s a little of my history:-
http://prettyill.com/forums/viewthread/786/#3827
and:-
http://prettyill.com/forums/viewthread/69/#1014
I noticed symptoms related to position, especially at night:-
http://prettyill.com/forums/viewthread/352/#1869
This talks of my association with hypermobility and the level of fatigue apparent from immediately after my fall:-
http://prettyill.com/forums/viewthread/360/#2047
Here I talk of some of the symptoms (you might recognise some, if not all!):-
http://prettyill.com/forums/viewthread/484/#3083
My thoughts on “low-lying cerebellar tonsils” :-
http://prettyill.com/forums/viewthread/426/#2222
Here I answer specific questions about symptoms, tests, management etc, posed by another forum member:-
http://prettyill.com/forums/viewthread/723/#3581
More about instability:-
http://prettyill.com/forums/viewthread/897/#4198Hope some of this helps you to understand your own symptoms and offers a little of what you can do to alleviate them.
Happy New Year!
Barbara
(UK) -
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