andy271160 Posted October 27, 2013 Report Share Posted October 27, 2013 Hello allI guess I am correct in thinking that most members are resident in the USA which is great, however being from the uk our clocks are afew hours out of sync so I just wonder if any members are from the uk so that we are in real time (not that it matters to much) but more importantly you might have some LOCAL knowledge which I could draw on.All you great people from the states, please dont stop posting me your input and support is fantastic.ThanksAndy Quote Link to comment Share on other sites More sharing options...
Noonoo Posted October 27, 2013 Report Share Posted October 27, 2013 I'm Nuala and in the uk! Based near Liverpool where local treatment was non existent so I've paid to see Prof M in London. I'm diagnosed pots and eds 3 with both running in my family. Mum had eds all get life without knowing...my sister collapsed 2 yrs ago out of nowhere and the same happened to me in March, weeks after the birth of my daughter. The STARS website and contact line are great for info and there are Facebook pages- pots uk and uk potsies. I hope you find the help you're looking for! Quote Link to comment Share on other sites More sharing options...
corina Posted October 27, 2013 Report Share Posted October 27, 2013 I'm in the Netherlands though my dad lives in the UK. We visit frequently! I'm pretty sure we have more members from the UK here! Quote Link to comment Share on other sites More sharing options...
andy271160 Posted October 27, 2013 Author Report Share Posted October 27, 2013 Hi NualaI am in Leeds so we are not that far apart, forgive me but what is EDS?? I understand pots but this is new for me.After 5 years of mis-diagnosis I finally got a fuller diagnosis of dysautonomia neuropathy with symptoms ranging from numb/painfull feet, lower legs, hands. painful joints, extreme fatgue, chronic pain, swallowing probs, uncontrollable body temp resulting in total body sweats lasting many hours, headaches, visual disturbences, digestive probs plus a whole lot morestuff to do with heart, breathing etc I used to collapse but have been confined to a wheelchair for a few years now so that is no longer a prob as I am never verticle.What kind of prognosis do you have?? regretably mine is terminal and for some strange reason I have been a lot happier with the diagnosis than i was prior to it perhaps I have not accepted it yet, it has only been two weeks since the specialist told me.Thanks for the info about STARS and facebook. i will check it out. are you on there?All the best and sending you all the support I can.Take careAndy Quote Link to comment Share on other sites More sharing options...
andybonse Posted October 27, 2013 Report Share Posted October 27, 2013 Bradford born and bread, living in Oxford now though!You really want to see the best in the UK, Professor Mathias in London. He surely knows his stuff! Quote Link to comment Share on other sites More sharing options...
loot Posted October 27, 2013 Report Share Posted October 27, 2013 I'm in the UK as well. Quote Link to comment Share on other sites More sharing options...
Noonoo Posted October 27, 2013 Report Share Posted October 27, 2013 Hi Andy, I'm sorry to hear things are so tough for you. I can only second what Bradford Andy said Professor Mathias is the main expert for the autonomic nervous system. It's £345 for an initial consultation and he runs 2 clinics in London. In the north there's Julia Newton in Newcastle for pots and there's a clinic in Sheffield but I guess it's a neurologist you need to see. Liverpool has a great Neurological unit but no one specialises in autonomic problems so I headed for London to find answers.Who diagnosed you? Have you had a second opinion? Have you looked at info from the states - Mayo clinic etc? There may be better research going on over there? There's lots of people on the Facebook groups but its mostly people with Pots- maybe search for dysautonomia to get a wider spectrum of illnesses. EDS is Elhers Danlos Syndrome- a connective tissue disorder which is often genetic. If you have the hypermobilty type - number 3 then your veins go slack due to insuffient collagen...your blood pools, bp drops and heart races to get blood round. Forgive the basic explanation- look up the Beighton scale and Brighton scale - they're the diagnostic criteria. Many with EDS are in agony with joints and suffer chronic fatigue but have no pots symptoms. I however was fit as a fiddle one day, couldn't function the next so it manifests itself differently in us all. The prognosis is uncertain in terms of improving our functioning. EDS makes things lifelong as we have a body wide issue with collagen which we are born with but there are treatments and measures which will improve quality of life. Are you having psychological support? There's a form of psychotherapy called acceptance and commitment therapy which is recommended for chronic or terminal illness.I hope you find some answers soon, Andy...Best wishesNuala Quote Link to comment Share on other sites More sharing options...
galatea Posted October 28, 2013 Report Share Posted October 28, 2013 I live in the UK, and am registered with Prof Mathias’s clinic. Anyone else in despair at the waiting times? Quote Link to comment Share on other sites More sharing options...
Mermaid Posted October 30, 2013 Report Share Posted October 30, 2013 Hi all, I'm also new and from the UK, living in Shrewsbury. I've been reading the forum for a while and the info helped me to get a diagnosis. I'll post my 'story' in a new member intro shortly. I am diagnosed also with POTS/ EDS after a private appointment and tests with Professor Mathias. I'm currently trying midodrine but not seeing any change in BP and heart rate and have now gone up to 5 mg. the whole EDS thing was a surprise to me. I'm not sure what happens next in terms of follow up and trying new treatments. I won't be able to pay for a consultation with Prof m every time i have a question! The STARS website was helpful and I've asked for a referral to a Birmingham specialist on the NHS but I'm sure that will take ages. Also seen a Mast cell specialist in Prof M's team but again this can only be done privately. More tests have been recommended but very expensive and so thinking now about next moves. I'll look at mast feel info on the forum and ask questions to help decide. Nice to meet you all, and know that there are others out there. Quote Link to comment Share on other sites More sharing options...
GN1978 Posted October 30, 2013 Report Share Posted October 30, 2013 I'm in the UK too, in Liverpool. Quote Link to comment Share on other sites More sharing options...
TCP Posted October 30, 2013 Report Share Posted October 30, 2013 I'm in Warwickshire. Hi! Quote Link to comment Share on other sites More sharing options...
Mermaid Posted October 30, 2013 Report Share Posted October 30, 2013 Hello GN1978 and TCP, can I ask who you both see for your POTs treatment? Quote Link to comment Share on other sites More sharing options...
Noonoo Posted October 30, 2013 Report Share Posted October 30, 2013 Hi GN, I'm in Formby near Liverpool....Who do you see locally...have you had any success? Ive had difficulty locally so ended up going to London. My mum and sister have been diagnosed with pots in the last 18 months out of nowhere with sudden onsets. I followed in with sudden onset one day in March- after the birth of my daughter in December. We all have EDS but had no idea. Best wishesNuala Quote Link to comment Share on other sites More sharing options...
LittleOne Posted October 30, 2013 Report Share Posted October 30, 2013 Hampshire Hog here! Quote Link to comment Share on other sites More sharing options...
GN1978 Posted October 31, 2013 Report Share Posted October 31, 2013 I'm being treated by a cardiologist at the Royal called Dr. Albouaini.Treatment has took the form of being prescribed beta blockers, which had an initial positive effect, but I'm once again not feeling too great.However, I've had a few problems, and still awaiting a full diagnosis. Had TTT in September, had no response from this. Chased it up and, at the start of this week, they ingot me me that they appear to have misplaced my TTT results, so no diagnosis has been made.They didn't even know about this until I chased them up for my results, but they are now looking into it and I should, hopefully, have a full diagnosis by the start of next week. Less than ideal, but I'll be happy if it eventually gets diagnosed, and if I don't have to undergo another TTT, as it wasn't overly pleasant! Quote Link to comment Share on other sites More sharing options...
GN1978 Posted October 31, 2013 Report Share Posted October 31, 2013 I'm being treated by a cardiologist at the Royal called Dr. Albouaini.Treatment has took the form of being prescribed beta blockers, which had an initial positive effect, but I'm once again not feeling too great.However, I've had a few problems, and still awaiting a full diagnosis. Had TTT in September, had no response from this. Chased it up and, at the start of this week, they ingot me me that they appear to have misplaced my TTT results, so no diagnosis has been made.They didn't even know about this until I chased them up for my results, but they are now looking into it and I should, hopefully, have a full diagnosis by the start of next week. Less than ideal, but I'll be happy if it eventually gets diagnosed, and if I don't have to undergo another TTT, as it wasn't overly pleasant! Quote Link to comment Share on other sites More sharing options...
Noonoo Posted October 31, 2013 Report Share Posted October 31, 2013 It sounds like we've had a similar experience in terms of hospital problems with lost referrals/ results etc. After 6 months of waiting for a TTT, mine was cancelled with 4 day's notice. I called 3 departments and had no luck rescheduling one...then I contacted PALS - (Patient Advice and Liaison) who deal with complaints and I had a new appt within ten mins. I'm learning to push the system as time goes on! I hope your treatment progresses well x Quote Link to comment Share on other sites More sharing options...
andy271160 Posted November 4, 2013 Author Report Share Posted November 4, 2013 Big decision in the morning for me.I have an appointment with the urology department in Wakefield, West Yorkshire to make arrangements for fitting suprapubic catheter, hoping it will stop the 10 times a night I need to wee which when you cannot stand or walk means a lot of help from my georgeous wife.We might find out what an hours sleep is like, it has been a long time.Andy Quote Link to comment Share on other sites More sharing options...
corina Posted November 4, 2013 Report Share Posted November 4, 2013 Sending good thoughts your way Andy! Quote Link to comment Share on other sites More sharing options...
GN1978 Posted November 5, 2013 Report Share Posted November 5, 2013 Just called my cardio as still no word on diagnosis.His secretary confirmed that a letter has been sent to my GP at the start of the week, a copy forwarded to me, but that she couldn't give any info over the phone, other than the cardiologist said the results were "reassuring".Reassuring? Does this mean POTS and nothing else? Or no POTS and nothing wrong? If the latter, what was/is causing me to feel crappy then and my standing hr to increase to over 130 bpm?I'm confused now! Roll on tomorrow's post! Quote Link to comment Share on other sites More sharing options...
andy271160 Posted November 5, 2013 Author Report Share Posted November 5, 2013 Thanks CorinaBig day today went well, the urologist flustered on a bit and made me think that more months of delay were about to be put in front of me but then he said that we can do this suprapubic catheter procedure within the next few days, i have watched a video showing how they insert the catheter through the lower tummy just above the pubic bone and straight into the bladder, it looks ok and they do it under a local so straight in and out same day.My wife and i are hoping that we will get a nights sleep without the normal ten visits to the loo each night.Cant wait for the op a nights sleep is long overdue and it is bound to help us cope a bit better day to day.my neurologist is Dr M Boix at pinderfields hospital west yorkshire and he is a specialist in the area of dysautonomia neuropathy although I have only seen him once but now i have found him i trust he will become a regular feature for the near future.Andy Quote Link to comment Share on other sites More sharing options...
millyaulait Posted November 7, 2013 Report Share Posted November 7, 2013 I am, too. I just joined. Hello, all.. Quote Link to comment Share on other sites More sharing options...
corina Posted November 7, 2013 Report Share Posted November 7, 2013 Glad things went well Andy. And welcome Millyaulait! Quote Link to comment Share on other sites More sharing options...
feelingsick Posted January 19, 2014 Report Share Posted January 19, 2014 Hi everyone, another one here who is not far from London!! Happy New Year.... It has certainly been a wet one so far. Quote Link to comment Share on other sites More sharing options...
sarahjanewebb Posted January 24, 2014 Report Share Posted January 24, 2014 Hi am very new to this site and to my pots diagnosis.I live in Bucks. Have been seeing Dr Weatherall under Neurology for my Persistant Headache and he felt I may have something wrong and sent me to The Hammersmith for my TTT where ignore my diagnosis.I am the only person at my GP surgery who has the condition and they have no clue what to so with me, so that's great :-/. So pots websites and forums like this are my constant source of support right nowNice to know there are a few others dotted around the uk:-) Quote Link to comment Share on other sites More sharing options...
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