Diagnosis In The Uk

[Griffin]

I have just been diagnosed with hypotension and tachycardia. Although they are not new problems it has taken blood sweat and tears, constant dedication to pursuing doctors, and years, to get them diagnosed.

I have had so many doctors dismiss the symptoms with stuff like "you are anxious", "get support stockings", and so many just not making the link between the two and it's really only been me that has kept a history of how often a doctor has found my heart racing and dismissed it, and how often I've almost passed out with people wanting to call ambulances etc etc. I also recently had a cardiologist tell me to go away and get fit which is quite alarming given I've now been told, since a different cardiologist has done the appropriate tests, that whatever I do, do not go near a gym !!

I'm sure many of you recognise this only too well.

I have one question regarding salt. I've been put on 1200mg slow release sodium tablets twice a day and told to come back in three months - the reason given being it takes salt a long time to permeate all the cells and also the doctor is concerned not to miss anything else along the way by treating too aggressively at first. This sounds sensible to me although I am disappointed it will take so long. Is this fairly usual ?

My other issue is I haven't actually been formally diagnosed with POTS or Dysautonomia - just Hypotension and Tachycardia. Describing these to others (non-medics) I've been told it is POTS and also I noticed in David Bell's article "The Relationship Between Neurally Mediated Hypotension and CFS" (I have CFS and I am auto-immune +ve with Sjorgen's Syndrome too) that POTS fits both my symtpoms and the doctor's findings - being number five on Bell's list of definitions (and I think at least one other of his to do with the diastolic). Article @ http://www.pediatricnetwork.org/medical/CF...ary/nmh-cfs.htm.

Is it a silly question to ask why the UK seems not to recognise these health issues, doesn't make the connections unless the patient pushes for it, and finally doesn't actually diagnose it as POTS or Dysautonomia?

[Csmith3]

I think three things contribute to the difficulty in getting a diagnosis. I'm going to oversimplify here to keep the post shortish, but it means this is going to sound harsh. I hope none of my better doctors are reading this!

1. There isn't a lot of expertise in dysautonomia. The diagnosis will probably rest with a consultant who was trained before POTS was recognised.

2. Medicine has gone too far down the box ticking route where tests are done in a certain order assuming you have the most common complaint and are not tailored to the patient.

3. Specialists are just that; they look for a diagnosis in their field and don't always link in other conditions.

From reading the boards here, I think 1. is worse in the UK than in the US, but everyone seems to complain about 2. and 3.

The solution is finding the right doctor, and I mean the right person with the right knowledge. This is the common goal of everyone here. Some people find the right person in a matter of weeks and then there are others like you (and me) where it took many years. For any other UK readers, please bear in mind that unlike some other countries, you may find the right doctor is a neurologist rather than a cardiologist - it just depends how the facilities are organised in the region you live in. To find the right person might involve researching consultants' specialities, research journals or calling an organisation like STARS to ask for a recommendation. I wouldn't rely on a GP to make the right choice.

I don't know if you are aware that NICE is reviewing the guidelines for transient loss of consciousness in adults and the committee includes some influential people in the field as well as patients who have experienced the system. I think this is a real opportunity to improve the diagnostic process and raise the profile of things like NCS, POTS etc and hope this will improve things in the future.

[Griffin]

Thanks Cath. Very informative. And clear.

It would be good if NICE got something right !

I found the doctor who finally diagnosed my Tachycardia and Hypotension via a referral from another doctor in a different specialty who chose him as he specialised in Tachycardia and Hypertension...... I think the theory was if he specialised in hyper he must know lots about hypo too...... luckily he did. He seems very thorough and has been really good.... it is such a relief.

On a more general note, linked to causes for missing diagnoses, I think another reason is doctors are so pleased wih low blood pressure, because high is so bad, they don't really listen, or perhaps just don't take it seriously, when one relates how it is affecting one so badly. With my Tachycardia they all seemed to think it was a one off when they found it..... it was only me who added up the times it was found and thought hey! is this constant rather than episodic? and then had to push for a doctor who would listen to me.

[Guest brianala]

FWIW, I have never been officially diagnosed with POTS or Dysautonomia either, but I have been diagnosed with NCS, mitral valve prolapse, inappropriate sinus tachycardia, orthostatic hypotension, and low blood volume.

I think that for people like us, it's safe to assume we've got Dysautonomia, diagnosis or not.

Personally, I haven't pushed for a definitive diagnosis for a couple of reasons. 1) I just don't know where I would start; there don't seem to be many doctors in my area that specialize or understand Dysautonomia or POTS, and 2) I'm not sure how it would change my treatment. My doctors are already managing my symptoms separately using a lot of the same treatments I see people with a Dysautonomia diagnosis here mention, so I don't know what having that diagnosis would change really.

It seems that there are links to other diseases/illnesses that can be the root cause of Dysautonomia, but without having some place to start from I don't know how I would go about finding out what could be causing it. And it doesn't seem like there is a whole lot of hope for a complete cure or reversal of symptoms, anyways. I think for now I'm content to manage my symptoms and try to make the best of each day.

[willows]

Hello Griffin and welcome to the site.

I spent from the age of 14 until I was 48 trying to get a correct diagnosis and in the end it was by sheer chance that i did and boy of boy was the consultant happy when the TTT came up 100% as POTS.

I have spent months in various hospitals being treated for things that have nothing to do with POTS, been given the wrong drugs, been called crazy ............ well my hubby and son may agree with this diagnosis as I'm always happy and singing and up to something which for someone who gets a h**l of a lot of pain is not normal apparently

When my son was just 4 years old I saw the signs of POTS in him , but it has taken me 14 years to actually get his diagnosed !!!!!!!!!!!!!!!!!

When we found a POTS consultant down in Devon last October , son and I went to see him , he asked Mike why he had come ..............isn't this a stupid question sometimes I want to shout at these doctors who ask this .................to sit and talk rubbish to you !

Anyhow Mike in all his innocence just blurted out ' I have POTS ' and you can imagine what this big consultant said ..................'Its up to me to tell you what you have , if you have anything at all son '

Three weeks later he retraced his statement as Mike's TTT was so bad his heart stopped on the table and the cardiologist who was there with some of her team was tottally and utterly shocked as she had never seen anyone do this before with just tipping them up and down !

I dont see any consultants now as ';m sick and tired of them , I feel that everyone I go and see I seem to spend my time teaching them about POTS as I have more knowledge of the illness than any of them , any drugs or problems I have I sort out with my two local GP's who I made it there job to find out as much as they can about POTS and if I ask for a different drug or increase they know that I have looked this up, researched it and then I place all of the facts in front of them , we discuss the drug and the problems that I may or may not have and then normally I get what I need . So far in all the last 9 years I've had not one problem drug wise ( unlike when I was under the hospital ) and my local GP will drop everything including a full surgery to come out to em if I have a bad attack , which for me living in an isolated village is total commitment to your patients.

This GP also looks after Mike, and his condition is getting more under control but he's been very ,low this past two-three months , which is why we are getting an animal ( two in fact ) for him as he's spent rather a lot of time in bed this last week or so with such exhaustion he just cannot stay awake and at 18 years old now going to bed at 7 pm when all your mates are out on the town boozing the night away chancing girls , neither Mike or I can drink and as for chancing .............well thats only sheep in his dreams poor lad .

If you want to talk about anything drop me a message and if you live anywhere near the West Country OMG that would be just brilliant as we are very few and far between with the POTS condition down here.

Regards to you and your family Ami xxxxxxxxx

[Griffin]

Hi Brianala

I get where you are coming from on diagnosis not making a whole lot of difference - provided whatever is going on is recognised etc. One of the reasons I feel strongly about it is the lack of understanding I get from all around me regarding my illness. For example, I am constantly told by well-meaning friends I should get some exercise and that will sort me out, my family think I am just being lazy or something, and I get very fed up with it.... sometimes when I am really low I start believing they are right. Since I have been told now since the diagnosis that going to the gym is a big no no etc I feel it would be helpful to my social and family environment of there were a label (ie diagnosis) that would mean something to them. Until all this is recognised and understood in the UK generally, many of us will continue to have pressure put on us which is inappropriate and often downright dangerous.

Hi Willows

I am glad you have a good understanding GP. I empathise with the researching it yourself and all of that ending up knowing more about it than most doctors. Again, as I said to Brianala, until it all becomes more mainstream medicine our problems getting properly diagnosed, and therefore properly treated, will, in general continue. Of course, this is nothing new. I always look back on the history of Multiple Sclerosis, which took years to become a proper and properly understood diagnosis, as an example of how hard it is to get things recognised.