How Easy Is It To Get Diagnosed In The Uk?

[rach73]

Hi,

I'm brand new here and I just wanted to say what a fantastic forum this is. Until I stumbled upon it I thought I was the only person in the world who felt like this and had such weird and varied symptoms. I am not diagnosed with any form of Dysautonomia and I am not expecting medical advice from anyone. I just wanted to share my story and reassure myself I am not going mad.

My story is a long one so I will try and keep it as brief as possible. Im 36 and married, no kids, three huge dogs though who are my life line. Three years ago I had the worst migraine I had ever experienced. Ive had them since I was ten and it had calmed down so that I was only having one a year.The next day I woke up with a small numb/tingling patch under my right eye. Over the course of a week this spread over the right side of my face.I felt extremely fatigued. Then day 7 I got ptosis (eye completely closed), I was diagnosed with Bells palsy given steroids and told your face could be like that for 2 years.

Now I know not all my symptoms fit with dysautonomia, but please stay with me! One of my permenant symptoms is bilateral or unilateral ptosis (one eye or both eye closed) and facial weakness so I look like I have had a stroke.

Before I became ill in 2007 I started sweating profusely whenever I was asleep, be it a nap during the day or at night. My sheets, duvet cover, PJ's would be wet through. My hormone levels were tested and all came back fine. This continues until this day. The weird thing is I hardly sweat at all during the day.

As the months progressed my health got worse. I got weaker and weaker and found it impossible to work and had to take time off. My ptosis is resolved by applying ice to the effected eye and on that basis I was given Mestinon, it was believed I had seronegative Myasthenia Gravis. My conditioned worsened and in 2008 I was medically retired from my job. Then the diagnosis of MG was removed, I was told I was suffering with stress and I had ME. I knew it wasn't ME my sister has had it for 20 years and my symptoms are not the same. Although her symptoms are now echoing mine.

I was also noticing that whenever I stood up my heart was going crazy, it would go from 80 bpm resting to 135bpm. Going up the stairs could make it go beyond 160bpm.I also get short of breath and my o2 sats drop. I use oxygen a lot at home. The drs can't explain my 02 drops and told me I was holding my breath. I had to wear a pulse ox for 24 hours it showed massive swings in heart rate and drops in oxygen. I can assure you I wasn't holding my breath and how can you do that for over 5 minutes?

I also noticed that when I got up from the toilet I would come over funny and almost pass out. Luckily I have a grab rail next to the toilet so I cling onto that for dear life! But I did fall in hospital once and cracked my head on the cistern.

Over the last 12 months I had noticed that I could no longer eat during the day due to nausea and vomiting. After I eat my evening meal within 45mins I collapse. I don't black out but I feel so weak I can't support myself, I can't sit up I have to lay flat. I didn't know what was causing it. I was also getting dizzy spells where I was seeing stars.

In March this year I had two days of testing in a hospital in a different part of the country this was to confim or exclude MG, tests came back negative again. I had to stop taking the mestinon for 7 days prior to the hospital visit. The weakness attacks I was getting after eating were now happening in the day. In hospital I thought I was going to black out, I couldn't move I could only lay on the bed. They took my blood pressure and it was 88/54 with a pulse of 57. I felt terrible, they panicked a bit and told me I was dehydrated. I can tell you for sure I wasn't dehydrated, I drink excessively I always have done even as a kid. I drink over 5 litres of fluid a day. After laying on the bed for a while I started to feel better and 30 minutes later my BP had risen to 100/70, still low for me. My BP used to range between 110/80 to 120/80. I have been tested for diabetes more times than I have had hot dinners and its always negative. But I'm still thirsty.

On returning home I emailed my GP to tell him about my blood pressure. He came out three weeks later (Im too sick to get to the surgery) he took my BP and it was 118/80 and he told me your BP is fine.I said Im sorry but I can't do it on command! He told me that Mestinon will make you hypotensive, I knew that to be incorrect due to the little research I had done on the Internet. I am allowed to continue taking mestinon and I quote the drs "because it makes you feel better." Not because it resolves my ptosis and means that I can function.

I knew something was wrong with my BP and I was determined to prove it after being fobbed off for three years. I bought myself a BP monitor and the results have been very revealing I do have bouts of low BP and I can feel when its dropping. The lowest I have recorded was 72/42 my eyes were rolling in my head and my vision was grainy and turning grey. I am 5ft 9in tall and Im a reasonably well uphostered girl, surely in the normal way of things my BP should be high! My cholesterol when tested in 2007 was 7.1, the target in the UK is under 5, this has also been ignored by my Drs.

I have days when all I can do is stay in bed as as soon as I get up I feel like I am going to faint. I become dizzy and disorientated. I can't sit as my head swims the only position I am comfortable in is laying down. Its no life at all.

For ages now also I have noticed that the blood pools in my legs when I am standing. I honestly thought everybodies legs did that until I watched a documentary on TV with a woman who was having multiple children (can't remember how many) she wasn't allowed to stand up towards the end of her pregnacy because the blood pooled in her legs.

I have a tonne of symptoms, freezing cold all the time, hands/ nails go blue, feel spaced out on standing up, see stars when I turn my head, heart rate can rise rapidly on just shifting position in bed the list is endless.

I have had a constant headache for the last 4 weeks which is only resolved when I lay flat. Its not a bad headache but I know its there and its grinding me down.

I have written to my GP this week with a full list of my symptoms as the hospital that I went to in March has discharged me saying theres nothing wrong with me. I have enclosed with that letter to my GP, a chart showing my BP, Pulse and activity so what I was doing immediately prior to the drop.

Having read the forum I have tested my BP when sitting and then standing. My Bp increases with standing(anywhere between 30 or 40 for the systolic, not so much for the other one) as does my pulse (goes from 80 to 135bpm.) My heart feels like its going to come out of my chest. Im getting palpitations pretty much all the time now. Plus a weird sensation in my chest like my heart expands, and then a big heart beat. I may get one or two of those in a row and then it goes away.

My problem is that most of the drs who have been involved in my "care" believe that my symptoms are all in my head. My GP has basically told me that I am not allowed to have any more referals. I haven't seen my neurologist for nearly a year despite the fact I have emailed him and told him my condition is worsening to the point where all I can do is stay in bed 5 days out of 7. In the UK you have to have a referal to see a consultant, even if you want to see them privately. I am at a point now where I really don't know what to do next but I can't spend the rest of my life laying on the sofa or bed and not being able to walk around because I feel so weak and ill.

I'm so sorry this is such a long post but I have reached the end of my tether! Any advice would be appreciated.

Rach

[Janey]

Rach, I'm so sorry for what you're going through. I went through exactly the same thing, except my GP kept telling me that I had "IBS and anxiety." I have the email of the POTS specialist in the UK, Prof Mathias who I emailed as a last resort, who over-ruled my GP and got me in on the NHS. It took a long time (he has a year waiting list) but it was worth it.

Very few general care doctors in the UK understand the autonomic system, as it is rare to have a problem with it. You will find that they never understand, even if you do get diagnosed with it. Luckily there are a really supportive group of doctors in the UK who specialise in it and who can help you. Prof Mathias also specializes in migraines.

Please PM me for his email if you want it.

[DizzyMe]

Hello and welcome.

I had a similar experience before I was finally diagnosed with POTS by Prof Mathias in Feb this year.

I second Janey's advice to email him directly,he understands the lack of knowledge in this area even amongst cardiologists.

I can relate to your frustration.I spent 2 years going back and forth between my GP(who thought I had anxiety)and various specialists who couldn't understand my symptoms until I eventually saw a cardiologist who thought I probably had Anxiety but possibly had an autonomic dysfunction and agreed to refer me to Prof M.

It was such a relief when I saw him and he immediately recognised by weird collection of symptoms.

I understand your despair with the medical profession, I was struggling to look after 3 very young children and felt terribly let down.

In the meantime you could try a couple of things, add lots of salt to your diet to help retain your fluids and improve your low blood pressure and try adding electrolyte solutions,gatorade,V8 tomato juice amongst your fluids. Also drink before getting out of bed in the morning.

Feel free to PM me also.

Melanie.

I knew something was wrong with my BP and I was determined to prove it after being fobbed off for three years. I bought myself a BP monitor and the results have been very revealing I do have bouts of low BP and I can feel when its dropping. The lowest I have recorded was 72/42 my eyes were rolling in my head and my vision was grainy and turning grey. I am 5ft 9in tall and Im a reasonably well uphostered girl, surely in the normal way of things my BP should be high! My cholesterol when tested in 2007 was 7.1, the target in the UK is under 5, this has also been ignored by my Drs.

I have days when all I can do is stay in bed as as soon as I get up I feel like I am going to faint. I become dizzy and disorientated. I can't sit as my head swims the only position I am comfortable in is laying down. Its no life at all.

For ages now also I have noticed that the blood pools in my legs when I am standing. I honestly thought everybodies legs did that until I watched a documentary on TV with a woman who was having multiple children (can't remember how many) she wasn't allowed to stand up towards the end of her pregnacy because the blood pooled in her legs.

I have a tonne of symptoms, freezing cold all the time, hands/ nails go blue, feel spaced out on standing up, see stars when I turn my head, heart rate can rise rapidly on just shifting position in bed the list is endless.

I have had a constant headache for the last 4 weeks which is only resolved when I lay flat. Its not a bad headache but I know its there and its grinding me down.

I have written to my GP this week with a full list of my symptoms as the hospital that I went to in March has discharged me saying theres nothing wrong with me. I have enclosed with that letter to my GP, a chart showing my BP, Pulse and activity so what I was doing immediately prior to the drop.

Having read the forum I have tested my BP when sitting and then standing. My Bp increases with standing(anywhere between 30 or 40 for the systolic, not so much for the other one) as does my pulse (goes from 80 to 135bpm.) My heart feels like its going to come out of my chest. Im getting palpitations pretty much all the time now. Plus a weird sensation in my chest like my heart expands, and then a big heart beat. I may get one or two of those in a row and then it goes away.

My problem is that most of the drs who have been involved in my "care" believe that my symptoms are all in my head. My GP has basically told me that I am not allowed to have any more referals. I haven't seen my neurologist for nearly a year despite the fact I have emailed him and told him my condition is worsening to the point where all I can do is stay in bed 5 days out of 7. In the UK you have to have a referal to see a consultant, even if you want to see them privately. I am at a point now where I really don't know what to do next but I can't spend the rest of my life laying on the sofa or bed and not being able to walk around because I feel so weak and ill.

I'm so sorry this is such a long post but I have reached the end of my tether! Any advice would be appreciated.

Rach

[MightyMouse]

Most of our UK members report universally similar experiences: very difficult to get the diagnosis, and even with an accurate diagnosis, the day to day people involved in treatment often discount the diagnosis and call it a mental problem. Wish I had more hopeful news for you as you make your way through.

Nina

[rach73]

Hi Nina, Mel and Janey,

Thank you so much for your replies, it means so much to me that you have taken the time to respond.

That is excellent news that Prof Mathias was prepared to over rule your GP. I'm so desperate I would be willing to pay to see him privately if it gets me to him even remotely shorter than 12 months.

I know that this is just the start of a very long journey, its been three years now and know that even with a diagnosis it can still be difficult. I just need to find a Dr who believes that I am ill and understands what is wrong.

Thank you all again so much.

Rach

[brownsea]

hi rach

as the others have said its so difficult to get a doc to take you seriously at first. the assume things then carry along that line so getting help is extremely difficult.

you will get there in the end, im really sorry your feeling like this at the moment. i was there last year and went private. ive also just found out what is causing my pots symptoms again i went private to find out.

keep writing this is a great site for help and understanding.

emmaxxx

[rach73]

Hi Emma,

Thanks for your reply. I have found out so much already by reading other peoples posts. The stories that people have written I could identify with aspects of many of them, it was spooky!

I have so many questions and I could write pages and pages, good for those of you who have problems sleeping!

I was wondering if anybody had symptoms triggered / exascerbated by having a Lumbar puncture (spinal tap) ? I have had problems for years but so vague and transitory Ive never taken much notice of them. However I had a lumbar puncture done in March 2009, it was extremely painful and took 4 attempts to get the needle in. I was left with a paralysed leg for 24 hours afterwards. It was 12 hours after this procedure that I recorded my first low blood pressure reading, not what medics would call low, but low for me think it was around 95/65. My symptoms have got progressively worse since then.

Thanks everyone for your replies.

Rach

[sj75]

it took me years to get a diagnosis as it just doesnt seem to enter the drs mind in the uk. Having said that this is changing. Whereabouts in the uk are you? have you had a tilt table test? seems fairly crucial to getting the diagnosis over here according to my doc?

[rach73]

Hi,

I am based in deepest darkest devon! So limited access to hospitals, as my neurologist works in all the local ones.

Unfortunately my GP is writing off my low blood pressure at present to me taking Mestinon (pyridostigmine). In his very old drug book it says that this causes hypotension. I handed in a letter to him last week giving website addresses for the Mayo clinic etc showing that Mestinon is used to increase blood pressure. I also enclosed a chart with my blood pressure readings on it. Im hoping now he will believe me, but who knows?

I haven't had any diagnostic tests as the last three years have been spent trying to get a diagnosis or exclude a diagnosis of Myasthenia Gravis. I only found out about the low blood pressure in March when I had been admitted to hospital for tests. Before that I had no idea what was causing these episodes of feeling awful and nearly passing out.

I'm on a sticky wicket at the moment as they have now excluded Myasthenia Gravis as the cause of whats wrong with me. I feel if I mention Dysautonomia / POTS they will think that I am clutching at straws, because they feel its all in my head.

Thanks for your reply

Rach

[anna]

I am based in deepest darkest devon! So limited access to hospitals, as my neurologist works in all the local ones.

Hi Rach,

Me and my kids live in Devon too, my three children have a tentative diagnosis of ANS dysfunction, probable POTS, but not much joined up thinking from their Dr.'s. My children see a cardiologist from Bristol, he comes down for paed. clinics in Exeter. He does do adult clinics but they seem based in Bristol.

Hope it is ok to post his name here you can find his contact details on Dr. fosters dirctory:

■Title: Dr

■Forenames: Robin Peter

■Surname: Martin

■Gender: Male

■Primary Medical Qualifications: MB ChB

■Date of registration: 06/08/1980

■GMC number: 2482703

■GMC Specialties: Paediatric Cardiology

Anna

[rach73]

Hi Anna,

Thanks for that. You must have your work cut out with the three kids having this!

I'm near Exeter so its worth exploring. I wrote to my GP on Wednesday and dropped the letter in as I was having an Xray at the local hospital. I'm still yet to hear from my GP. He probably saw the size of the letter and put it at the bottom of his in-tray!

Thanks for your reply

Rach

[DESPERATE DEB]

Hi everyone,

Interesting question. I am based in London and on advice from another member on here, I took matters into my own hands and wrote to Professor Mathias myself. He replied personally as well as his PA and said based on my symptoms, I should ask my GP to refer me. Great! I was so pleased.......

Called my GP just today and told him about it. He said he is not allowed to refer me to anywhere apart from local hospitals! He went on to say "in any case we can't just keep referring you willy nilly, we need to make a clinical decision" Which is exactly what I have been trying to get since last August! I really don't understand this and I have told him I am taking this further. I know that not everyone on here lives locally to Professor Mathias so I think this is just another fob off.

I would love to say in answer to your question that this would be easy, and I hope it is for you. I feel like writing back to Professor Mathias and telling him I can't get referred.

Good luck to you and anyone else in getting help with this.

Take care.

DD

[anna]

I just found this on the NHS choises page

If you need to go to hospital to see a specialist, you have the right to choose which hospital you're referred to by your GP. This legal right, which was introduced in April 2009, lets you choose from any hospital offering a suitable treatment that meets NHS standards and costs.

So if you add this to your legal right for a second opinion then maybe you have a chance!!!! We live in hope.

Anna

[rach73]

Thanks for that Anna, I have personal messaged you!

Also DD - I have personal messaged you also.

I contacted Prof. Mathias today and had an email back within hours. I will be sorting out an appointment with him shortly.

Thanks again to everyone

Rach

[flop]

DD your GP is wrong. Dr Mathias works at a specialist unit that takes referrals from all over the UK. Sometimes your GP needs to apply for special funding for out-of-area referrals but if there is no-one at your local hospial that reals with autonomic problems then the funding should be approved. I suggest that you print out a copy of the e-mail from Prof Mathias and take it to your GP. If they still say no ask to speak to the practice manager. After that I would make a complaint - hopefully it won't come to that.

Flop