People who spend years and years trying to get a medical diagnosis

[Leavesofautumn]

I know there are people with specific medical conditions, e.g. PCOS, but nobody will listen, and it just takes one doctor to finally agree. But I'm talking more about the people who have "mystery" symptoms, where you keep going from doctor to doctor but nobody can work out what's wrong, or you keep being told it's psychosomatic when you know full well it isn't.

Please tell me it gets better. Please tell me someone worked out in the end what was wrong.

I'm sick of being fobbed off by doctors, and this includes specialist consultants. I'm sick of being told nothing's wrong.

Well, someone finally worked out one of the things that was wrong with me, which was/is coeliac, but (a) it took until I was 60 and (b) the guy was looking for the cause of my lack of feeling in my feet rather than the digestive issues that had plagued me for most of my life.

The second main thing (ASD of some kind) I sort of self-diagnosed with the confirmation of DW who has a psychology degree. I decided that I didn't want professional help on that.

I think there's something else as well (genetic) but to be fair my consultant disagrees and there are complex (non-medical) reasons why I can't take the definitive test. In any case, they can only treat the symptoms, not the underlying cause and as those symptoms are being treated anyway, it's only my own itch to know that's relevant.

I'm in the same boat OP it's very lonely and distressing x

I have just been diagnosed with fibromyalgia after many years of seemingly unconnected episodes of ill health and a feeling that somehow something was being missed. Could it be you have something similar that can only be diagnosed after a lot of other things are ruled out?

It can have about 200 different symptoms so it would be easy to be seen by lots of people who don’t connect all of them and rule out causes related to their own specialism. You have my sympathy it is hard feeling ill and nobody can tell you why.

Have you asked to see a geneticist OP? Many rare conditions are complex and have a genetic origin. Their rarity means healthcare professionals don't recognise the signs. But this is geneticists' bread and butter.

That must be so hard for you. Would it help if you re-frame it as 'they haven't found anything wrong yet' rather than 'nothing is wrong'? Clearly the doctors you've seen have not been able to find anything wrong - that does not mean nothing is wrong, just that they can't find it.

Me. Ten years of symptoms dismissed as ‘you’ve got three kids’ and ‘it’s fibromyalgia’. Locum GP did blood tests and sent me to rheumatology and I was finally diagnosed with lupus. Am better now I’m on meds but still not well. But at least I know the cause and that it’s being treated and monitored. Is appalling that women (in the main) do get ignored with thyroid, fibromyalgia and gynae issues though. And get accused of being hypochondriacs if they push the issue.

@Cosybelles

That must be so hard for you. Would it help if you re-frame it as 'they haven't found anything wrong yet' rather than 'nothing is wrong'? Clearly the doctors you've seen have not been able to find anything wrong - that does not mean nothing is wrong, just that they can't find it.

That's how I see it personally, but it doesn't help much if that's not how doctors see it. I saw a specialist a few weeks ago and they've just written to my GP (they sent me a copy) to basically say that I need to see a psychology-type person. They're basically accusing me of making it up, or imagining things. I know there is something else wrong.

@LockdownCheeseToastie

Me. Ten years of symptoms dismissed as ‘you’ve got three kids’ and ‘it’s fibromyalgia’. Locum GP did blood tests and sent me to rheumatology and I was finally diagnosed with lupus. Am better now I’m on meds but still not well. But at least I know the cause and that it’s being treated and monitored. Is appalling that women (in the main) do get ignored with thyroid, fibromyalgia and gynae issues though. And get accused of being hypochondriacs if they push the issue.

Oh gosh yes, something similar happened to someone I used to know. She believed for years that she had fibromyalgia because she was always in pain, but it took about ten years for someone to finally refer her. She was actually diagnosed with Ehlers-Danlos in the end, but both conditions are dealt with my rheumatology so it shouldn't have made a difference in at least getting a referral. I think it's awful how women in particular aren't listened to.

It took over two years and 4 specialist to diagnoise me with Lupus ( although my own GP was sure that it was Lupus a good year before, but the specialist wouldn't agree)

Yes I'm convinced I have M.E or something like that. I have lots of vague symptoms like digestive problems, joint pain, exhaustion, muscle weakness. Ive had various blood tests and been to rheumatology twice but nothing significant has been found. My vitamin D was through the floor and had a loading dose and then maintenance doses which helped but I didn't feel a dramatic difference like I expected. I have arthritic change in my knees and feet which could explain the pain in those joints. I'm also flat footed and have insoles to put in my shoes which does help. Every now and then I have these big crashes where I feel dreadful for a few weeks. The doc suggested diet and exercise which I know I need to lose weight which would help. He said I should be doing 3 x 1 hour sessions of weight bearing exercise I think he said per week. But this would absolutely kill me. I probably wouldn't be able to do it but if I did I'd be exhausted after. Cos of covid I haven't chased it but yes I do feel like something isn't quite right.

Yes! DS showed symptoms his entire life but it took six years from the time the correct diagnosis was raised (and dismissed) to the final (more or less correct) diagnosis.

In that time, I was accused to being over anxious, being a bad mum for wanting to my DS through thoroughly unpleasant tests (the same tests that did eventually prove the diagnosis), DS was referred to CAMHS, I was accused of maunchesens, and they threatened me with DS being taken into hospital purely so they could prove it was me. Most of the above was in one appointment during a 1 hour stand up row where I dared to tell a rather high up consultant he was wrong It is now on record he is not anywhere near my son or me.

It did eventually all come together but...

Ime the only way I have found to deal with the NHS is beat them round the head with bigger/private professionals until they fail to ever concede they might be wrong actually try to treat/,diagnosis correctly. I've gone from not meeting the level of need for the local services to even bother to look at the paperwork to meeting the criteria for referral direct to a national centre of excellence after a private consultation. I've never got anywhere with the NHS alone.

It took me 15 years to get my coeliac diagnosis, I massively sympathise

@Caramellatteplease See, my worry is that if I get diagnosed privately and it turns out to be some kind of rare or lesser-known medical condition, I'm worried that the diagnosis won't be taken seriously by NHS doctors. I'm worried that if I'm given long-term medication, my GP might refuse to give me an NHS prescription and then I'll be left with paying hundreds of pounds every month. And I know that some doctors really disapprove of private healthcare in general, so I might not be taken seriously because of that, especially because of where I live. I'm definitely looking at some private consultants but I don't know where it will lead.

@MissSmiley Did you know within yourself that you had coeliac, or did you have unexplained symptoms that you didn't know what was wrong?

I have pretty good health insurance here in the US and a doctor who will refer me ASAP when I have an issue he can’t help with. It still took about 5 years to get a diagnosis of neuralgia. I saw maybe 4 specialists before I found the one who could diagnose.

Sadly the treatment has fairly awful side effects so I’m just living with it for now. At least I know where to go if it gets worse.

I've spent years and ££ consulting private consultants.

I have health anxiety and it's taken years for me to accept it.

Yes this happened to me. Multiple visits to the GP over the years with a bad back which was causing me to spasm (I'm playing down the pain & symptoms here as it would take too long to go into).

After 4 years of getting nowhere and being told I had anxiety which was causing the pain, a locum at the new doctors sent me for a referral and a MRI showed a huge spinal tumour. It had been left so long and caused so much damage I could've been paralysed.

I go in to see doctors now assuming I'm going to receive the same attitude so I tend to have an argument in my head before I go in. They've actually been fantastic since but I still remember not being believed for so long.

Yes, i spent about 2 years trying to find out what was wrong with my MIL.
She fell hurt her foot that never got better, then the leg went, then the other foot then her arms wouldn’t move properly and she started sounding like she was pissed up all the time.
All this time I was back and forth to the docs and they just kept sending us away to wait on physio.
She was eventually admitted to hospital when she was choking on food and drink, although the paramedics that came did not want to take her to hospital because they couldn’t see anything wrong.
2 weeks after she was admitted they discovered she had motor neurone disease they told us don’t worry you get years after diagnosis.
I had been back and forth for nearly 2 years already with her. She died 12 days after diagnosis.
Its horrible OP ,just keep fighting .

Regarding your subsequent post, OP, it would depend on the quality of the diagnosis. I've seen a spectrum from genuine lightbulb diagnosis of rare condition to giving the patient what they want with medication that posed long term adverse consequences for no clinical benefit (patient basically said prescribe X and private doctor seemed to take the money) and correct diagnosis eventually achieved years later. If you want to go private and I'm sorry to hear about your experience, how will you pick who to see? It might be an idea to ask how them to set out how their diagnoses lead back into NHS treatment before the consult.

Good luck.

DS is a really unusual condition (or set of conditions) It helps if theres a definite test that can then be done on the NHS to confirm.

I have on occasion had to remind doctors that there is actually no obligation to use the NHS for everything. After that if there's still a problem it's on the private doctor to argue it out with the NHS doctor as a matter of professionalism. I am not above letting consultants duel it out.

It's making the private doctor is sufficiently independent, you dont want one who still covers for is NHS buddy. With DC I've gone straight to Portland street and found it £200-£300 well worth spending. I'd always go for the london specialist if you can

You can have your gp do a referral letter to a private hospital and specialist on the NHS. It will be taken seriously, you just need to research the hospital and dr you want and insist that they write the referral letter.

Funnily enough I was diagnosed after a private genetic test, it speeded things up but I probably would have got there in the end, I got another horrible autoimmune disease because my coeliac was undiagnosed, my antibody test coming back negative, diagnosed in the end with biopsies and gene test

A specialist suggesting psychological treatments does not mean that they think you are making it up or imagining it though and it’s not very helpful to assume that. It’s pretty well understood that lots of physical and very real symptoms can be caused or worsened by the way you think, obviously not intentionally. I have IBS, almost entirely caused by stress. No doctor has ever suggested I’m making up having to run to the toilet but they have offered psychological treatment and it has hugely improved my symptoms.
Obviously you haven’t said what your symptoms are but if there is a chance that psychological treatment may help at all it would seem sensible to try it whilst still pursuing a diagnosis if it isn’t helpful.

@Crinkle77 on the exercise front my consultant recommended generally being active, but also Tai Chi or yoga. I have dogs and he said that he often recommended people got a dog as a walk daily is so beneficial.

Psoriatic Arthritis is really under diagnosed. They find low Vit D and blame that

DH got diagnosed unusually quickly and by fluke as GP misread notes and referred him a year more quickly than they said they would!