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BarbaraParticipant
Also… I have frequent ovarian cysts. They HAVE to be related.
Hi,
Funny you should mention ovarian cysts, I had a dermoid ovarian cyst removed when I was only 11 years old. I remember they told me it was rather unusual at that age . . . . . .
Barbara
(UK)
Head & Neck Injury 2002, POTS, EDS, CCI (with PG & CS), WAD, Empty Sella, Peripheral Vestibular Dysfunction, Mild Radiculopathy & small fibre neuropathy (right leg & foot resp.)BarbaraParticipantHi,
It’s common not to have all of the traits of one classification of EDS. Many of us have features from another classification, like the vascular type, they seem to overlap. I have been diagnosed with EDS Type III but I don’t have much in the way of hypermobile joints either (other than my knees). I have to say and I don’t have stretchy skin but I do have soft skin and fragile skin, which splits, or breaks down very easily. I do have the velvety skin and also my veins are prominent across my chest (looks like a road map!). I have a minor problem with my mitral valve (and possible aortic insufficiency according to some old medical notes).I have scoliosis (twisted back) to some degree, which seems common and have suffered various types of low back pain some due to rogue disks, the latest I think due to dural ectasia (coccyx pain) another common denominator according to The Driscoll Theory. I had varying degrees of sciatica, over the years. I have had varicous veins since a child too. recently read that many EDS’rs have a bit of an indent at the top of the nose, where the cartilage is not as prominent as the bone, I have that too.
I was always going over on my ankles and knees as a child and had a lot of sharp pain in my chest, between each rib when I tried to breath, it would last a little while then go off but it happened often. Does that sound like what you had ?
My mother, however, had more classic symptoms – a high palate, could touch her wrists with her thumbs, had a heart murmur and dropped arches (flat feet) so I knew there was a possibility I could have the underlying disorder.
Regards
Barbara
(UK)BarbaraParticipantHi
I am certain this website will bring comfort to many. I watch some of Dr Diana’s video’s nearly every day (as there are quite a few!) and they have answered so many questions about my condition that have remained unanswered for many years. It almost feels like coming home. Just listening to the two videos of Dr Diana’s symptoms, confirm that you are not alone with these weird and wonderful (NOT!) symptoms, I just sat with my mouth open (and getting wider, as most of her symptoms I’d had, at one time or another).You’ve found people who understand what you have been through and what you are still going through and hopefully, thanks to Dr Diana’s endeavours, we should be able to get practical, effective help, in the not too distant future, that might just give us our lives back. Hang on in there.
Regards
Barbara
(UK)May 17, 2012 at 11:07 pm in reply to: palpilledema anyone? Also does anyones eye pressures test high first when they first get checked? then go down the longer they sit in the Dr Office? #2178BarbaraParticipantHi
Just checked my consultants report from when I was referred to the eye specialist in 2005, at which time I was having loads of problems. I thought it said papillaedema but it doesn’t, it actually says mild papillae in the conjunctiva with dryness, whatever that means ?He does comment that extra-ocular movements were full, though they were slightly painful on extreme peripheries (and remain so to this day – now accompanied with a nauseating feeling!).
In addition, other than strange visual problems, I have constant high pitched tinnitus, sometimes accompanied with what sounds like a lorry going up hill (on a morning). I can hear blood pulsing in my head. Sometimes the image I’m seeing flickers when I blink, I can also ‘see’ my heart rhythm pulsing in my vision from time to time. I’m sure these are the symptoms of raised intercranial (intracranial?) pressure. Anyone else get these symptoms ?
What type of specialist is it best to see with these type of problems ?
Regards
Barbara
(UK)BarbaraParticipantHi
I’d be interested in this too, as all 3 of my fathers siblings have gone blind to some degree, so there’s an eye weakness that seems to run on his side of the family. I know for sure that one of them had Macular Degeneration.
Barbara
(UK)
Head & Neck Injury 2002, POTS, EDS, CCI (with PG & CS), WAD, Empty Sella, Peripheral Vestibular Dysfunction, Mild Radiculopathy & small fibre neuropathy (right leg & foot resp.)BarbaraParticipantHi Diana,
I can send you copies of the set of discs, no problem (although be warned – I do seem to have accumulated quite a few!) . . . just let me know when.When can we expect your next info release?
Can’t wait to see which Neuro you’re gonna get on board . . . (think I might know already!)
Keep up the good work,
Barbara
(uk)BarbaraParticipantHello,
Following my accident in 2002 (a backwards fall onto a low stone ledge) I developed a slowly progressive, seemingly neurological condition. My list of symptoms, some of pain, some of discomfort, some altered sensation, some malfunction, some diminished function, etc., seemed to be expanding every week. No-one in the NHS seemed to have a clue (or a care) what was going on, it would seem that, as soon as you become complex, you get tossed into file 13 (the bin!) and passed across to our learned psychiatrist friends! Luckily I had photographed or videoed several of my symptoms, so they couldn’t insist they were ‘imaginary’ and, as a consequence, they passed me back across the fence, telling my doctor to look for the physical cause. I was referred to a neurologist but passed their tests so nothing was done.I had no option but to start my own investigation in 2003, when I developed swallowing problems, to try and get to the bottom of it, before it got to the bottom of me! Using the internet (marvellous!!) I input many of my symptoms and came across a website that seemed to have many of them already listed – it was on an analysis document that compared the symptoms of Fibromyalgia/Chiari/Spinal-Compression (check this out on http://www.nfra.net/Symchart.htm)
I scored highest from the ‘Chiari’ set of symptoms but I dismissed it at the time because they said it was hereditary and I didn’t know of anyone in my family that had been diagnosed with it. Years later, having found no joy elsewhere, I revisited the theory and when I finally got from the UK to the USA in Nov 2008, to be assessed by The Chiari Institute, I was told that my Cerebellar Tonsils (lowest part of hind brain) were abutting my Foramen Magnum (opening at the base of the skull where your spinal cord comes out). This did not quite meet the criteria for true Chiari 1 Malformation, which has to be herniated by 5mm and mine was only herniated 3mm or so.
Basically I had what’s called ‘Cerebellar Ectopia’, which is a term they use, when you obviously have some degree of hind-brain herniation but not enough to fit the Chiari 1 Malformation criteria. I’ve heard some refer to it as ‘Chiari 0’. Interestingly enough though, this fits in with Dr Diana’s theory, in that, if pressure was building up above the brain, then the brain would be pushed downwards – through the Foramen Magnum!
The result of this ‘displacement’ of brain is that it ‘bungs up’ the Cerebro Spinal Fluid (CSF) pathways between the skull and the spine, restricting the natural flow of this fluid.
I have heard that some of you, who’ve been lured into having a lumbar puncture (DON’T DO IT!) have come back with a ‘normal pressure’ result even though you have symptoms of raised intracranial pressure, maybe you have an underlying Chiari 1, Chiari 0 that has ‘bunged up the plughole’ so to speak and this is why it’s producing a ‘false negative’ result.
Regards
Barbara
(UK)BarbaraParticipantThank you, it takes one to know one, as they say! I think there are many of us that are ‘smarties’, it seems to go with the condition. My POTS specialist here in the UK, Professor Mathias, commented on the fact that he’d noticed many POTS sufferers were of high intelligence (and I know your theory has us noted as ‘over-achievers’, which is probably how it manifests).
I’ll be only too glad to share my Radiology for the furtherance of this cause, anything to try to put an end to all this needless suffering – by so MANY!! Would you want me to select particular views, or would you prefer to have the whole set sent (or brought!) on discs.
If I can do anything else to help, just say.
Barbara
(UK)BarbaraParticipantHi,
I too figured that whatever was wrong with me had something to do with my vagus nerve, as many of the symptoms I was suffering from, following my head and neck injury in 2002, had some connection to that nerve. I figured this out way back in 2003, when I mentioned it to a Neuro-surgeon (whom I had asked to see for a second opinion, after my Neurologist told me to ‘go home and forget about my symptoms and I’d get better’!!!) Nearly 10 years down the line and I’m a total bodily wreck, so much so that my children’s pet name for me is either ‘wheelz’ or ‘in-valid’!!)Anyway, this Neuro-surgeon simply dismissed it, saying that you have a vagus nerve at the left and the right and if one was not working properly the other would compensate for it. He was adamant, so he sent me down the road with a treatment plan of twice a week physiotherapy sessions at £30 a time – which made me worse! In my mind, I obviously disproved that theory but he wasn’t willing to investigate it, to find out why – so I hit yet another ‘brick wall’ in trying to obtain effective treatment!!
I’ve felt all along that the vagus nerve still held a clue but couldn’t get to the bottom of it. How thankful I was, when I discovered The Driscoll Theory, especially the part regarding Vagus Nerve Compression by an enlarged jugular vein – and when I went and checked my MRI scans to compare with Dr Diana’s examples, what did I find – yeay!!! – I had an enlarged jugular vein! After reading The Driscoll Theory MANY things are making sense. THANK YOU DR D!
Barbara
(UK)May 8, 2012 at 4:54 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2123BarbaraParticipantJust a quick word about collars and supporting the head/neck at night.
Prior to getting my wonderful Philadelphia collar (which I cannot praise highly enough), I used a make-shift one that was not as cumbersome but never-the-less effective to a degree, for providing some support. What I bought was a horseshoe shaped ‘Cushtie’ (they have them on ebay for about £10), it’s a stretchy fabric filled with tiny polystyrene beads, it’s very lightweight (and washable to some degree). I sewed an additional seam around the outside, to add a bit more tension to the fabric and make it more supportive, a velcro fastener was sewn to both of the front parts, so that it could be ‘closed’ to make a full circle.
It helped me reduce the discomfort, so I hope it can help someone else.
Regards
Barbara
(uk)BarbaraParticipant. . . . . . forgot to mention this one (and probably a few more!)
Eye muscle pain – triggered when looking far to right and far to left, makes me feel sick too!
Regards
Barbara (UK)BarbaraParticipantHello,
I’ve had so many different kinds of pain, it’s difficult to know where to start.
Occipital Pain – this I awoke with, so something that happened overnight triggered it.
Dull Discomfort at mid-section top of head – again I awoke with this every morning.
Pain Behind Eyes – sometimes night but more often morning, worsens if you rub the eyes.
‘Ice-pick’ short-lived stabbing pains in head – at any time, don’t know the trigger.
Jaw aches (from time to time) – just by chewing.
Neck & Shoulder Pain – worsened by sitting still (at computer!) improved with heatpad.
– cured altogether with a philadelphia collar on 24/7 (and headache!).
Upper Arm Pain – triggered by lifting arms, worse when above heart level.
Elbow, Knee & Finger ‘Joint’ Pain – there most of the the time now (10 years after accident)
Hand Pain (wrist, general tissue, muscle and bone itself) – Improved with Vitamin D (& HRT)
Lung/Chest Wall Pain – (triggered by clotting type events?) takes weeks to resolve
Chest Tightness – not really pain, more discomfort, like being squeezed. Many things trigger:
e.g. standing up too long, or anything that demanded effort, small domestic tasks:
e.g. emptying dishwasher, peeling vegetables, stirring pans whilst cooking,
grating anything, beating anything, slicing bread or roast meat, etc
Lower Oesophagal Pain – gastric reflux obviously, triggered by anything wheat, sometimes rice.
Stabbing Pain (front to back) alongside/underneath stomach, rare – don’t know what causes this
Mid Upper Back Pain – Sitting too long at the computer triggers this (get pricking Lhermittes)
Very Low Back Pain (Like a horse has kicked my coccyx!) – I think it’s from sitting too long.
Bottom Pain – for some reason this worsens if I have more sugar than usual, as does other pain
Upper Leg pain – muscles no longer strong enough to straighten if squatting, need all 4 limbs!
Calf Pain – Hurts if I’m still, hurts if I move for too long (can’t win!) coldness worsens!
Cannot raise legs to level with bottom, causes cramp, so have to sleep tilted.
Used get cramp-like pain (weird – shins would go really thin) twitches followed.
Leg Tissue Pain – cannot cross ankles, or bear any weight on legs at night, tissue collapses
Skin soreness, knuckles – can’t sleep with fingers intertwined, this causes soreness overnight
Skin soreness, general – can’t wear textured clothing, or anything tight, indents tissue.
Feet Pain – pads under feet seem diminished, padded soles help, thin soles worsen pain.Things that worsen pain in general are:
Coldness
Head being in flexion
Something that happens overnight (don’t know what though)
Sugar (also worsens sores, or any bleeding I might have)
Foods – Rhubarb, possibly tomatoes
Hope this helps somebody to figure it all out.
Regards
Barbara
(UK)May 5, 2012 at 7:56 pm in reply to: I see most have POTS in this forum-Does autonomic neuropathy qualify? #2116BarbaraParticipantI don’t think it matters really what our ‘groups of symptoms’ are classified as, what does matter however, is what’s CAUSING them. Like I was at one point, I suppose many visitors to this website have no diagnosis whatsoever. POTS, does seem to be a common consequence of the likely ‘Cause’, that Dr Driscoll has proposed.
Just for the record, I wondered if POTS was a phase that you either went ‘through’, or went ‘in and out of’ because now (some 8 years down the line since POTS reared it’s ugly head) I notice that, even though I still cannot stand up for long, my heart no longer races to 30 beats more when I stand. My blood pressure doesn’t drop however, instead it continues to rise, so maybe I’m not true POTS anymore, more Neurally Mediated Hypertension (NMH) now? Maybe this raised blood pressure is just another mechanism that the human body recruits to try and deal with the difficult situation it finds itself in.
I’m curious that you say you HAD POTS but don’t have it now, what makes you say you don’t have it now?
Regards
Barbara
(UK)BarbaraParticipantJust a quick response regarding teeth abnormalities. I personally had sort of peg-like teeth which grew at each side of my front teeth, they weren’t quite like my friends’ incisor teeth. I had them ‘crowned’, as soon as I could afford to and now they look fine!
My son however, never got these two teeth at all! The dentist made a ‘bridge’ to provide the extra teeth and close the gaps.
Regards,
Barbara
(UK)BarbaraParticipantWhilst we’re on the subject of eyes, has anyone had a ‘myopic shift’?
Can anybody tell me what it means ?
Is it something every 50 year old woman should expect, or is it linked to EDS ?
Regards
Barbara
(UK) -
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