Sue New

Hi CyberPixie, I have now found an e-mail address for Professor Grahame's secretary and will send it to you by PM. Cheers Sue.

Dear CyberPixie, I have sent you a PM with Professor Grahame's secretary's tel number. As far as i am aware he has not retired. I last saw him at UCLH in August, but as I am going to see Dr Hakim this Thursday to discuss the results of my Autonomic Function Tests and for a general follow up, I may be able to tell you more after that. Take care. Sue

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

Hello Again, As you may have noticed, I have now worked out to add my signature Sue.

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.

Hi There, I know this is an old post but I am a new member and have a lot of problems with General Anaesthtics. I have had 11 operations to date so far: 1 x Wisdom Teeth Extraction (all 4 removed) 3 x Laparoscopy (1 with Myomectomy) 3 x Colonsocopy (1 with Polypectomy) 2 x Knee Artroscopy 1 x Total Abdominal Hystectomy 1 x Cystoscopy One of my Arthroscopies had to be cut short due to my BP dropping dangerously low and I was kept in hospital until the top figure rose to a safe level. Recently I hacve had fluctuating responses to the anaesthetic - my BP tends to drop during and immediately after the surgery but then goes dangerously high so that I have to remain in recovery until it goes back to normal. The last couple of operations I have had it has been touch and go whether the surgery would go ahead or not as the anaesthetist has been worried about my adverse reactions to being put under. I had to undergo an ECG Stress test and be cleared by a Cardiologist 2 days before my Hysterectomy and even up to an hour before my Cystoscopy last month, I did not know if they were going to let it go ahead or not. I am scheduled for 2 more ops in January so I am sure I will be going through all the uncertainty again when I go for the pre-op assessments . Take care all Sue.

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.

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.