New Member from UK with EDS

[Sue New]

Hi Everyone

I have just joined this message board today but have looked in on occasion in the past.

My health history is quite detailed, but in a nutshell I have recently been daignosed with Ehlers Danlos Syndrome (April 2005) although I was diagnosed with Hypermobility Syndrome in 1989 aged 18/19.

Dr Hakim from University College London, referred me to Professor Mathias as he suspected I have Autonomic Disturbance and I underwent the tests at Queen Square on Friday. I am awaiting the results, but I know that my deep breathing test produced a "Rare Abnormal Square Wave" response - whatever that means, as the techinician had never seen the response before and had to get someone else in to verify it.

Some of the weird and unexplained symptoms I get are flashing lights in my eyes that pulsate in rhythym with my heart beat after minimal exertion, double vision - possibly due to a convergence insufficiency or weak eye muscles, prominent chest veins after minimal exertion, feelings of pressure in my head if I stand up to quick or move suddenly and feelings like I am falling whilst sitting and standing.

I am under numerous specialists at my local hospital plus Prof Grahame/Dr Hakim and now Prof Mathias in London.

I will keep this introduction short(ish) , but I just wanted to say "Hello", particularly to any fellow UK EDS sufferers who may be members of this board.

Take care all

Sue.

[Sunfish]

hi sue-

just wanted to say hello & welcome. and that your "sue new" name gave me a smile i'm sorry that you have reason to be here but am glad you found us. and you're definitely not alone in having done some lurking before signing up...that's a popular path to take

i'm not from the UK (though have family there...) and don't have EDS (but am hypermobile to a degree...) but i do have a pretty wacky autonomic system amongst other things. and there are a handful of active UKers, some with EDS, on the board, so i'm sure you'll hear from them.

glad to hear that you've had some testing already....while diagnoses don't have autonomic fixes, knowing (to some degree) what is going on & being connected with good docs is definitely a step in the right direction.

welcome aboard,

melissa

[ben_uk]

Hi Sue,

Welcome to the forum.

I also live in the UK (London) and am under Professor Mathias. I am not sure if I have EDS because I have yet to undergo testing (I go to Queen Square for testing in a couple of weeks), but he said there is some evidence of joint hypermobility.

I share some of your symptoms, like the pressure in the head and feeling like falling.

Hope you feel better soon,

Ben

[Sue New]

Hi Melissa & Ben,

Thanks for your welcomes. I use the name "Sue New" on nearly all the boards I have joined as I have trouble with my memory, and this is my nickname at work as my full name is Sue Newson. It is also quite apt when I first join a new board.

To give you a little bit more info about my symptoms by BP can be quite erratic ranging from 188/106 - 90/60 and my HR can range from 106 down to 60. I know that is not as drastic as some of you on this site, but it can cause me pains in my chest, shortness of breath and palpitations. I have had ECG Stress Tests and an Echocardiogram in the past and one Cardiologist thought I may be suffering from Angina but thought I was too young .

I oftern wake uop in the middle of the night feeling like I can't breath or swallow and with numb/tingly hands and feet and half of my face feeling numb. When this happens my hubby has to calm me down as I get all disorientated. I also wake in the night as if I am paralysed and can't move any of my limbs and feel as though I really have to struggle to pull myself back into consciousness.

My EDS is quite debilating and I use 2 elbow cruthces and a mobility scooter - I am waiting for a wheelchair that my OT has ordered me. I also wear wrist and ankle splints and a brace on my neck at night.

I have had 11 operations to date and have 2 more scheduled in January - 1 of which is a Carpal Tunnel Release because of the numbness I get in my hands - I am still not convinced the numbness is due to Carpal Tunnel.

I had a Brain MRI and Neck MRA back in July but my local Neuro never got back to me with the results - I recently learnt from my Opthalomologist that he is waiting for the results of my Autonomic tests before deciding what to dio with me.

I had a Total Abdominal Hysterectomy last year (aged 34) and a lot of my symptoms seem to have got worse since becoming menopausal. Has anyone else found a correlation between autonomic problems and hormones? I have also developed a enlarged Thyroid gland and possible Hyperthyroidism since the menopause too ......

I won't bore you with anymore of my symptoms for now - there are so many things going on all at once that I don't know if I am coming or going .

Bye for now

Sue.

[Guest CyberPixie]

Hi Sue,

I'm in UK, was diagnosed with EDS 3 by Prof Grahame (lovely man!) in 2001. Have autonomic dysfunction (POTS) Been very poorly with it since May.

Too ill to type anymore!

[MightyMouse]

Welcome Sue, like you, I have hypermobility (EDS III). I hope you find much support here on the forum. Nina

[persephone]

Hey Sue! I saw Prof Mathias on Tuesday. I have EDS and POTS with VVS. I'm 24 and doing a masters at Oxford.

I get all of your symptoms, but my blood pressure ranges from asystole (0) to 228/163. My pulse also ranges from 24 to 221. Normally though I run at 70-140 during a well spell.

Do you find that stretching makes you worse? It really does seem to trigger a weird reaction in me. We sound quite similar, because in my most recent tilt test I was told that they'd never seen anything like what happened to me either!!!

Good to have another UK person here. I'm always saying we should meet up and have a gathering if British people. THere are more and more of us. Hayley and Becky will probably chime in and say hi soon- they're UK people too. And Baby Boy is aswell (James).

Welcome!

[Madwife]

Hi Sue! Sorry to meet u this way but I can assure u that this is a great place for support and understanding. I'm Zoe, also in the UK! Sorry to keep this short and sweet but feelin rough tonight trying to struugle through a night shift at work but just wanted to say hi and welcome!

[catmcgrath]

Hi Sue,

I live in London and see Profs Grahame and Mathias too.. I have EDS hypermobility and POTS but everything is a bit complicated by the fact that I have had a cerebral anuersymal bleed in my brain which gives them something else to think about.

I recently saw Prof Mathias (he is so lovely) for my test results which were interesting and explained a lot about why I feel the way I do , my HR ranges from 42 to 140 and when I excercise it likes to be at 170 which sends the gym machines into warning messages!

I am not on any meds as we are trying for a baby so the prof has me on loads of salt and fluids, I am now addicted to salt..can't get enough of it, I'll even turn down chocolate for some salted cashews!

It is difficult to live life with POTS and EDS but you will find support here and I wish you all the best for the future.

Hope all you other UK guys are OK, sorry not been on for ages but somethimes I feel less down about being ill if I stand back from it for a while and pretend its not real if you know what I mean!

Catherine

[becky]

Hi Sue,

i don't have EDS but i am from the u.k! i have similar bp and pulse problems, chest pain palps etc.

i'm 24 as well and i think that hormones must have something to do with our illnesses cos i get much much worse around period time, even on medication.

Hope you are feeling well at the moment though.

big hugs

becks x x x

[Guest Julia59]

Welcome Sue,

I have read quite a bit on EDS---and it sounds like you have been affected a great deal with your mobility.

It's nice to see there are experienced ANS specialists in the UK. Lately I see more and more people in the UK who have POTS.

I also have EDS along with my POTS. Passing out is not a big issue for me---it's more near syncope, and feels like the floor is moving all the time. BP and HR are all over the place, but I have seen many on this board who are much worse off then I in that department. I have been told by two neurosurgeons that I have congenital cervical spine stenosis, mild chiari malformation & brain stem compression due to instability of the upper spine/cranial area. I also have several herniated/buldging disks from my cervical, thoracic, and lumbar spine.

There are two other doctors (NSGs) who didn't believe my spine issues were very serious. The one from the Cleveland Clinic thinks my spine may be affected from the EDS. I did have one surgery on my cervical spine----diskectomy/fusion of c5, 6, and 7---with a titanium plate added. I'm thankful that he added the plate as I'm not sure the surgery would have been successful without it.

Catherine----I hear you on the salt thing. I crave salt a lot lately. I love potato chips---pretzels---

I avoid chips unless I can find them baked. How about having salt and chocolate-----you can on chocolate covered pretzels. Pop a few chocolate chips in your mouth along with a bite of nice salty pretzel----yum....

Dark chocolate is good for you----in moderation.......Of course there are those days where moderation doesn't apply.

You will find a lot of support and compassion from this forum----especially on those long nights you can have with this stuff.

Take care,

Julie :0)

[Sue New]

Hi Guys,

Thanks to all of you for your kind welcomes. I am sorry to hear so many of you are suffering with similar problems as me, but it is always nice to know there are others who know what you are going through.

A lot of my health conditions are "invisible" - other than when I am having a dizzy attack or people see me trying to catch my breath after walking just a few paces, and hobbling around on my crutches.

Persephone, I do find my symptoms get worse if I stretch my arms above my head, and funnily enough when I yawn and stretch first thing in the morning, that actually makes me feel a bit lightheaded and my right hand starts shaking involuntarily - weird huh?

I know I said I won't go into all my health problems in one go, but I also have another rare condition - Duplicated Kidney Systems (4 kidneys and ureters) and this adds to my Bladder problems which may or may not be connected to my EDS or Autonomic problems .

A quick question, can some please tell me how you add a signiture to the bottom of your posts? I have not worked that out yet, and thought it would be useful to be able to list my major health problems in one go.

Also, does anyone know whether Professor Mathias is ok about receiving questions by e-mail? After my tests I was told I may not get the chance to see him and my results would be sent straight to Professor Grahame. I feel there are a number of my symptoms that I would like to have the chance to discuss with him. I also have a lot of problems with my Neck and a number of Doctors have suggested I may have either High Spine Instability of Vetebrobasilar Insufficiency (where the blood is not getting to the brain properly). I have had a Brain MRI and Neck MRA but my local Neuro never got around to discussing the results with me . I found out from my Opthalomologist that he plans to see the results of the Autonomic tests before seeing me again. Another problem is as I am under so many consultants my fhospital file often goes missing as it is being hogged by the various Specialists and being used to train Med Students about my EDS problems - this has led to me not getting the follow ups I should be getting in the past and results of tests going astray .

I just feel that despite all the different consultants I see, no-one is actually looking at my condition as a whole and would value the opportunity to discuss some of these things with Prof Mathias. I took the "Bull by the Horns" at the weekend and sent an e-mail via his secretary, but wondered if any one had any direct experience of dealing with him and would be able to give me an idea of whether he would talk to me or not. I just hate to think that I am going to crom across as an "anxious" patient, as I had a nasty experience with a Locum GP once (before my formal EDS diagnosis) who suggested I was "somatising" and that there was nothing physically wrong with me and it was "all in my head" .

Sorry to have rambled on a bit.

Take care all

Sue.

[Sue New]

Hello Again,

As you may have noticed, I have now worked out to add my signature

Sue.

[persephone]

I always email Prof MAthias- c.mathias@ic.ac.uk

Good luck!

[Sue New]

Hi Persephone,

Thanks for the e-mail . Does Prof Mathias work at Imperial College as well then? I have had a very brief "thank you for the information" e-mail back form the Autonomic Unit Secretary - but it does not mention if she is going to forward the info onto the Prof. Oh well, we shall see. I will keep a note of his direct e-mail in case I don't hear anything back further.

Do you find that the Prof is ok when you e-mail him?

Take care,

Sue

[persephone]

I emailed him before I first met him and he's never told me not to! He is a professor of neurovascular medicine at Imperial College London, and he holds a private clinic at St Mary's in Paddington which comes under Imperial College, but the National Hospital of Neurology comes under University College London- he must have ties to both? I'm not really sure. But I know that his professorship is through Imperial... you can look him up on google and it shows you.

I would stick with the email- phoning and writing don't seem to work, and when I asked him last week he said he had received my email.

[biatecki]

Welcome Sue,

I`ve e -mailed Prof Mathias several times over the last few years and have always had a prompt ,personal reply. Go for it !

Margaret.

[Mrs. Glass]

Welcome Sue New sorry I havent responded until now. Sorry you have to join us also but you have come to the right place for big shoulders and support. There is a great bunch of people here. Talk to you soon Mrs. Glass aka VAnessa

Edited November 30, 2005 by Sunfish

[persephone]

you only get a personal reply when you're paying to see him.