How do you actually get a diagnosis on the NHS?

[Rebarns]

Hi, I have just been told by my GP that she "thinks it could be the case that I have ME" or words to that effect! I tried to explain that I need a definite diagnosis and asked if she could refer me to a specialist, which apparently can't be done because of funding issues!!!

I'm not entirely sure why there are specialists if people can't be referred to them??? So basically anybody got any ideas of how you can get a diagnosis/see a specialist??? I know that it's not easy to diagnose but I also know that the sooner you get the diagnosis the better, and I've been ill for 3 years!

Any advice much appreciated!

 

[ChrisD]

I had to battle for atleast 9 months to be referred to the CFS service and even after three months on their books (only seeing them twice), they came back with the same response of ''you fit the criteria for a typical case of ME'' but nothing definitive. It seemed like they didn't really want to say it outright, either because they have a theory about false illness beliefs and patients succumbing to a diagnosis, or they get slapped on the wrists for this diagnosis if it means patients end up getting benefits (just my theories).

I had to contact them again and again with loads of my own evidence and long letters to convince them to write a more definitive letter that my new GP (I move location) could work from instead of sending me through the whole arduous process again. Its a joke - and a mess.

 

[ryan31337]

Hi @Rebarns,

I don't intend for this to come across as patronising but there is an awful lot of politics and stigma attached to CFS/ME that you may not be aware of. At best our doctors tend to think of it as a wastebasket diagnosis for conditions that they cannot diagnose, at worst its a condition that is psychosomatic and unworthy of their attention. The reality is that plenty of evidence exists suggesting it is neither of these things, but there are significant barriers preventing most doctors from appreciating this.

So I'd start by asking why you need a definite diagnosis? If it is because you need something to write down on a form for disability/absence, I can understand. But if it is because you want treatment, you are better off pursuing an alternative diagnosis. I would go so far as to say a CFS diagnosis in many cases will lead to less investigation and less effective treatment on the NHS.

The best you can hope for with a CFS diagnosis under the NHS is a referral to a fatigue clinic, which captures a wide variety of patients, many of which do not have CFS/ME as modern science understands. The advice given in those clinics can therefor be quite inappropriate, depending on your underlying illness. If you are very lucky, as I was, you might get to see a doctor in one of these clinics who can delineate the signs and symptoms, then refer you on to other specialists for potential missed diagnoses....but I'd suspect that this does not happen very often. Indeed under the NHS guidelines as I understand them, once you have a CFS diagnosis this is actively discouraged.

Ryan

 

[Rebarns]

Hi @ryan31337
Thanks for the info!
To be honest I pretty much want a diagnosis out of desperation!!! I've been ill for 3 years now and after 3 years of people telling me I'll be fine and just to go to bed on time, when I'm going to bed at 8:30 and still feel like I can barely move when I wake up in the morning! Also having a name to your condition helps with people at least respecting that your ill even if they don't understand and also I'm currently trying to get work that doesn't make me feel like I'm about to die! Obviously I'd rather find out that I don't have ME but if I do I just want to know! But my local GP seems to want to do as little as possible to help, so I'm a bit stuck!!!

 

[alkt]

Hi @ryan31337
Thanks for the info!
To be honest I pretty much want a diagnosis out of desperation!!! I've been ill for 3 years now and after 3 years of people telling me I'll be fine and just to go to bed on time, when I'm going to bed at 8:30 and still feel like I can barely move when I wake up in the morning! Also having a name to your condition helps with people at least respecting that your ill even if they don't understand and also I'm currently trying to get work that doesn't make me feel like I'm about to die! Obviously I'd rather find out that I don't have ME but if I do I just want to know! But my local GP seems to want to do as little as possible to help, so I'm a bit stuck!!!

I would suggest finding a new gp asap but it could still be difficult to actually find one who is still in the early stage of actually being keen and interested in their patients rather than ticking all the procedural boxes.

 

[ryan31337]

Hi @Rebarns,

Sorry you're not getting the support you need. I think a second opinion from another GP would be sensible, though I've never managed to see one that's worth much as a diagnostician unfortunately.

I don't know anything about your symptoms, and wouldn't be qualified to say anyway, but it might be worth you looking into a few common but frequently missed medical issues that either overlap with or are often misdiagnosed as CFS. You could start with POTS and Hypermobility disorders:

http://www.potsuk.org/symptoms
https://www.nhsinform.scot/illnesse...one-and-joints/conditions/joint-hypermobility

They may have no relevance to you, but POTS & hypermobility are good places to start because you can collect some objective evidence quite simply, on your own. Support for these conditions are still pretty sketchy on NHS, but if you manage to get in with the right clinic, you will be better looked after and have a diagnosis that justifies your poor health without having to call it CFS.

Hope it helps,
Ryan

 

[Rebarns]

Hi @ryan31337
Thanks again for the advice, it's much appreciated!
Interestingly my sister has both POTS and EDS (a hypermobility syndrome). I can say I'm almost certain I don't have a hypermobility disorder, and although I have many of the same symptoms as those with POTS, I don't have the Tachycardia part which I know is a prominent symptom in my sister!
There does seem to be a lot of conditions with overlapping symtoms to ME, which I guess adds to the difficulty in diagnosis!!
I have had all the blood tests to rule out all the "usual" conditions, but am seriously considering changing GP to get another opinion!
Rose.

 

[ryan31337]

No worries. I'm sorry to hear about your sister being unwell too.

Given your family link I would be very highly suspicious of a connective tissue disorder. I had a CFS diagnosis for 20 years before someone picked up on the POTS, which then led to a positive hypermobility assessment - sort of backwards!

I was skeptical too because I am nothing like the typical hypermobile EDS presentation in terms of joints, but after a really thorough assessment from one of the UK's hypermobility experts I came away with a firm HSD diagnosis, despite not thinking myself hypermobile before.

I hear this quite frequently in support groups - it seems there are plenty of us that don't have the 'party trick' extreme peripheral joint hypermobility/instability seen in hEDS, but still suffer from much of the same general co-morbidity, which can be treated. Like most complex conditions, these nuances are usually lost on non-specialists like GPs, who can only go by the classic presentations. Autoimmunity is often present somewhere in the mix of this population too, so important to keep that in mind (I've had celiacs and a spondyloarthropathy added to my diagnostic list over the years, as well as small fibre neuropathy which fits in somewhere too...).

With regards to the lack of tachycardia - a different type of orthostatic intolerance, like orthostatic hypotension could be at play. Probably worth considering if you can find a repeatable way to exacerbate and trigger your symptoms, if so you might be able to get them looked at properly in a neurocardiology clinic. Divide and conquer is the way forward

Ryan