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BarbaraParticipant
Hi Anouk,
Just to let you know that Dr Diana has kindly written paper to help us all to get the right type of eye check-up. It is available online at:
http://www.totaleyecare.com/Diana-Driscoll-Ehlers-Danlos-Eye-Doctor-HANDOUT.pdf
Hope this helps.
Barbara
(UK)BarbaraParticipantHi Jamie,
I’m sorry to hear of all the problems your family have, I know it’s a constant worry, especially when you’re not getting answers.Regarding the ‘inheritance’ issue you raise, I can only relate my experience, in that, my mother could touch her thumbs onto her arms, she also had a heart murmur and flat feet BUT she was never diagnosed with EDS. I had none of those features and have lived most of my life in a very active fashion and had no idea I had EDS until a head and neck injury triggered a boat load of symptoms (more like a war-ship than a boat!) nearly 10 years ago.
Since being diagnosed myself, I have been looking at the various health problems that my children (and grand-children) have had and I believe that most of them have undiagnosed EDS. Their issues are nowhere near as extensive as your family’s issues are but I share your concern. I thoroughly understand how EDS can remain undiagnosed, as the doctor will just treat that particular symptom you present with at the time, no-one really bothers about over bendy fingers etc, until they start getting pain in them. I think Dr D’s Theory, that EDS is grossly undiagnosed, is more than likely to be absolutely correct. So your relatives may have had it, unknowingly.
Incidentally, strange you mention hip issues at birth because my own youngest daughter had ‘asymmetric creases’ which the health visitor said may need to be investigated, as she may need a brace, luckily she didn’t, my older daughter’s hip easily dislocates too. My son has had fatigue issues since he caught pneumonia aged 4, he also never got 2 of his teeth, they just never arrived. My grandchildren seem to have issues which all could be related to EDS, vision, memory, bladder, swallowing, hypermobility, one grandson has quite a few developmental issues (speech, attention, co-ordination, etc) and a growth issue, which are currently being investigated.
I believe help is on it’s way, now Dr D’s on the case!
Regards
Barbara
(UK)BarbaraParticipantHi,
I can comment on a couple of issues here, firstly, whilst in A & E in 2002 (from immediately following my head and neck injury) laying on my back in the cubicle, I experienced an electric shock type episode. It was like an sharp electric shock from the top of my brain right down to my toe, sudden, intense and over in a flash, as I say from top to toe. I found out these were called Myoclonic Jerks. These I continued to experience, usually when laying relaxing, for many many months. I rarely get them now (but there again I don’t lay down). What I do get now, is something that feels very similar but not as intense and it only affects one limb, be it an arm or a leg and this can happen at any time night or day. My mum’s cousin’s daughter had Multiple Sclerosis and I remember her legs and arms used to jerk in a similar fashion (but a lot more often than mine do) – further adding to Dr Diana’s Theory of a possible relationship between EDS and MS. (I was diagnosed with EDS a couple of years ago).Secondly, with regard to your enquiry as to whether anyone else had a diagnosis of limb neuropathy, I went down to London in 2004 for Autonomic Testing at our UK Referral Unit at UCLH, after suffering intermittently purple painful legs and becoming unable to walk and the NHS weren’t doing anything to help me. I paid a small fortune for a full suite of tests, lasting 5 days, as an inpatient. How glad I was that I went, for they spotted several problems, as follows:
1. Postural Orthostatic Tachycardia Syndrome (POTS)- with exercise & remaining upright.
2. Peripheral Vestibular Dysfunction – causing my balance issues.
3. Mild Radiculopathy in my right leg following EMG needle tests in my muscles,
showing “Mild Excess of polyphasic units of normal or increased duration”, also
“Some rather large units recruiting early”, another leg muscle showed
“Occasional Polyphasic units”.
They also spotted thermo-recognition problems in my right lower limb and called
this ‘Small Fibre Neuropathy’. An explanation, at last!I do know I felt very well indeed, in comparison to before, following the 5 days bedrest!!
Don’t know if there’s any significance in this but my blood tests showed that my cholesterol was on the high side but that my ‘good’ cholesterol the HDL, was high too, so this gave me an advantage (and reduced any risk). Additionally, they noticed my ‘C-Reactive Protein’, which is an inflammation marker, was above normal.
Regards
Barbara
(UK)BarbaraParticipantHi MJ,
I wish you every success with the Philadelphia collar (heaven knows we need it!!) I did find that it cleared the occipital (back of head) pain, that I used to wake up with, straight away. I do have to sleep sitting up though as, even with the collar on, things start to go wrong if I’m horizontal for any length of time (as explained in Dr Diana’s Theory, part 2).The annoying neck and shoulder pain that used to come and go (often) throughout the day, for which I seemed to be persistently wearing a ‘hot wheat bag’, went too. The arrhythmia’s (irregular heartbeats) calmed down, so did the fasciculations (wriggling and twitching under the skin) which weren’t as prolonged, as often, or as intense after wearing the collar – I did have to wear it 24 hours a day though. It appears very cumbersome at first but, for the long-term comfort it brings, it’s absolutely worth it, no contest!
Regards
Barbara
(UK)BarbaraParticipantHi,
Just to report, I have the following problems with my fingernails:
Longitudinal ridges in all of my nails.
Some deep horizontal ones on my right hand middle finger(following 3 chest infections?)
The nails sometimes curl under at the ends, so I keep them short.
They are darker pink around the ‘half moons’ then pale, then darker again at the ends.
The half moons have disappeared on my little fingers, nearly so on ring fingers too.
They are brittle at times and split, sort of in layers, is the best explanation.
I get dark red or black flecks appearing in the nails from time to time.
They vary in strength, I suppose depending on my overall condition.Regards
Barbara
(UK)April 22, 2012 at 8:39 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #2033BarbaraParticipantHello,
I’m new to this forum, so I’ll say ‘Hi’ to you all. My name is Barbara, I am from the UK and I had an accident in 2002, where I fell backwards and smashed my head on a low stone windowsill, about a foot off the ground. This sharply twisted my neck to my left and forced my head forwards. I had a miriad of symptoms, some immediate and some which crept up on me very insidiously and, as this forum topic is about paralysis, I would like to tell you about my experience of it and, more importantly, how I stopped it. It has definately been the most horrific of my symptoms.Within a short time of my accident I started to experience intermittent tingling in my hand, at first I noticed it during the daytime, in particular, when I was stationary in traffic. There were two things that eventually became apparent. The first was that I had to have my hands below my heart level, in order to avoid having ‘circulatory’ hand problems, so I had to keep them low on the steering wheel when driving. The second and probably the most important thing I noticed, in relation to what was to come, was that looking down (with my head in flexion) had something to do with the tingling.
Now the intermittent tingling that only started in one hand during the day, started to affect me at night when I was dropping off to sleep and I was waking up with it too. As if it wasn’t enough to wake up cold and clammy with my heart racing and gasping for breath !
Eventually, over the weeks and months, the tingling started to affect the other hand, then it began to spread up my arms, then it started to affect my feet as well, then up my legs, after some months it had spread to my lower abdomen. I was scared and no-one in the medical field was helping me. The trouble was that by the time I was up and out of bed it dissipated, so no-one ever got to examine me in this ‘state’.
This was was only the tip of the iceberg, little did I know what was to come. It continued to spread, affecting more and more of my body, over time the tingling turned to numbness, it even affected my scalp, then my tongue. When you wake up with everything numb, including your tongue with your lips pursed and barely able to utter a sound, you know you’re in trouble! This was happening 3 times a night. I was waking up every 2-3 hours in this state. It didn’t stop there, the tingling that had progressed to numbness had now progressed to excrutiating pain (the worse you could possibly imagine) and the only way I could get out of this state was to move each muscle individually, VERY SLOWLY – which worsened the pain!!! It was taking me 40 minutes to get up out of bed, to get rid of the pain – every 2-3 hours.
I noticed that, during the day, so long as I was moving, I seemed relatively ok, other than the hundreds of fasciculations (muscle twitches) I was now getting, everywhere. Also when I slept during the day, the symptoms weren’t as bad, was it because the room was warmer, or was it down to position? Being an analyst I decided to study how my symptoms reacted to different sleeping positions and I found that each position had different effects on my symptoms but I found that sleeping more sitting up was the best. I was sleeping more upright on the sofa, during the day.
One very important observation I made, was that when I woke up feeling dreadful, my chin was also right down onto my chest, not a position I particularly remember being able to achieve before my fall, this was the key. Another observation I made was that my urine PH was so low it was nearly off the scale. Now after 5 years of enduring this (how I managed to survive it and retain my sanity, I just don’t know!!) I managed to get a referral to Spinal Injuries and they fitted me with a Philadelphia Collar and Brace – WOW the pain reduced to a 3/10 OVERNIGHT and I actually slept 5 hours solid, for the first time in YEARS.
Over time, lots of things started to heal, the arrhythmias became less, the fasciculations were less often, less intense etc, it was marvelous. I would never have thought that, after being so ill, for so long, that I could ever recover to that degree from it. I still have a long way to go but I can witness that the body is an amazing piece of engineering and that, given the right help can repair itself, given time. Let’s hope that Dr Diana’s hard-working efforts can be the start, or a continuence of the healing process for us all, that we can start to participate in life again.
Regards
Barbara (UK)BarbaraParticipantHello,
I’m new to the forum but not new to the condition (EDS, POTS, CCI, etc), which I have suffered the consequences of for the last almost 10 years, since I had a head an neck injury.Having worn a collar since 2007 and tried several en-route to finding the best. This is my analysis, based on my experience:
2/10 Basic Soft collar – doesn’t cradle the head sufficiently to aid correct CSF flow.
4/10 Aspen collar – unfortunately doesn’t support the natural curve of the neck enough.
6/10 Johnson CTO (Metal Jacket)- excellent support for head but not neck which soon aches.
9/10 Philadelphia Collar – Excellent support for head and natural curve of the neck. It
maintains the head and neck in good relation to each other, aiding CSF passage
through the cranio-cervical junction (between head and neck). I had a gross
reduction of my symptoms from the first day I wore mine, some immediate, some
eventual. Point of note: You do need to wear collar linings with this one!!Hope this helps, as it might not be the right type of collar that you are using, that’s all,
Regards
Barbara (UK) -
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