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.

@Zilla1

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.

Ah, yes I've heard about people asking private doctors for specific medication. I'm definitely not one of those people as I have no idea what medication I need! In finding out who to see, my old GP used to recommend private doctors for other issues, but my new GP isn't interested and says I have to research it myself. So it's just a case of googling and making some phone calls to find stuff out.

My DH had a mystery condition from childhood. He saw some of the best neurologists both here and overseas. None of them knew what was wrong with him.

When our 12 year old DS Started exhibiting the same symptoms, it became clear that he had inherited the condition from DH.

I just HAD to get a diagnosis. DH had lived with the condition for nearly 40 years. I didn’t want DS to suffer the same fate.

I posted the symptoms on Mumsnet and Bingo! Within a few posts we had a diagnosis. Well, a poster suggested a condition and the doctors subsequently confirmed it.

It took me seven years of fighting to be diagnosed with endometriosis.

I was routinely in crippling pain, missing huge amounts of time off work and had been admitted to A&E more than once.

Every time I saw my GP they sent me for STI tests.

One particularly charming female GP told me I likely had an STD and that this is what happens when you have lots of sexual partners. I hadn’t but that didn’t seem to matter, nor should it.

I was also told by the same GP I was highly strung when I was experiencing a severe episode. I made a formal complaint.

Ind the end I finally had surgery and was told afterwards I had such a bad case of endometriosis it had basically taken over my womb and covered my bowl.

It’s so frustrating that Women aren’t believed and have to fight so hard to be taken seriously

*bowel

i have known this and in the end, a diagnosis was made but took a long time. It was very stressful for the people involved but a great relief when someone finally believed them.

One was a neurological issue.
The other turned out to be a rare, tropical thing which was sorted.

Don't give up but do broaden your search of specialties. Not every condition fits neatly into a box.

@KhalliWhalli Unfortunately I've already asked on Mumsnet a few times (with a different username) and nobody has come up with anything. But I'm glad it worked for you. In fact, I've heard several such stories in various places, so it's great that people are able to help.

Yep, it took me 8 years and I was diagnosed by a random locum GP who sent me to a specialist

Have you found any forums for your symptoms that might be helpful with a recommended consultant or are they too diffuse to be helpful?

What was your GP's take on next steps in addition to the consultant's suggestions or have you just read the cc letter and not spoken to them, yet? Some symptoms are innately difficult to lead to a firm diagnosis quickly. Depending on the symptoms and history, perhaps the GP might be able to suggest a referral to another specialism as well as the 'psychology' CBT/?? suggestions?

I totally disagree OP and think you might change you view that's it is sadly just needing to 'play the system'.

No need to worry and out nhs not taking you seriously.

I tried on nhs. Got nowhere. My mum suggested it, I took ds to see the consultant that We were supposed to have seen on the NHS, having looked him up and specifically found that he did both private work and NHS work.

and once I've got the private diagnosis, I then asked to be referred back to him on the NHS and once you do that you're back in the NHS system and it's all okay. And funnily enough everybody's attitude completely changed, once it had been ok'ed by the very same nhs consultant!!

But I never forgot. That I had been officially accused of munchausens and seriously nearly lost both my children. Funnily enough that never leaves me.

@Whyemseeaye That is absolutely horrendous! I'm so sorry that happened to you. I've heard endless stories of women with endometriosis taking years to get diagnosed, but blaming you for having lots of sexual partners?! I remember how I was treated once by a pharmacist when I went to get a morning-after pill, and I wasn't even in pain so goodness knows how insulting that must've been for you.

I should add mine was infection after infection and crying in the doctors about why was I always ill. Blood tests for years
Locum opened all the blood tests after my most recent ones came back, and I was severely neutropenic on every one and sent to haematology where they all were masked up

Ten years for me, ten years of being told to basically suck it up pain wise, told I must have a very low pain threshold, even my own Mother thought that too. Saw male doctors from 4 different surgeries due to moving house/uni. Same old, same old.

Then I had a female GP who listened, looked back through my file and said I think you might have endometriosis, referred me to a consultant but also sent me for a scan where I found I had "chocolate" blood filled cysts on my ovaries. Consultant believed me and started treating me and eventually my condition was confirmed with surgery.

Having now had 2 children and knowing what labour feels like I now know my pain threshold is pretty decent and I feel vindicated. Every month I still feel like I am in labour, if I really was experiencing that amount of pain from labour I would be heading to the hospital for the good drugs. Instead I do the equivalent of hypno-birthing to deal with the pain, TENs machine, heat pad and the less great drugs. Fucking joyous.

I still struggle to go to the GP for anything as the fear of not being believed is still too real and I was diagnosed with endo 20 years ago.

I went round this loop. Depression, CFS, piles, shingles, TATT are all things I've been told were the cause of things. Over 25 years.
Turned out to be two autoimmune disorders. I wasn't imagining it.

@Oblomov21

I totally disagree OP and think you might change you view that's it is sadly just needing to 'play the system'.

No need to worry and out nhs not taking you seriously.

I tried on nhs. Got nowhere. My mum suggested it, I took ds to see the consultant that We were supposed to have seen on the NHS, having looked him up and specifically found that he did both private work and NHS work.

and once I've got the private diagnosis, I then asked to be referred back to him on the NHS and once you do that you're back in the NHS system and it's all okay. And funnily enough everybody's attitude completely changed, once it had been ok'ed by the very same nhs consultant!!

But I never forgot. That I had been officially accused of munchausens and seriously nearly lost both my children. Funnily enough that never leaves me.

Thank you. In fact I already did this when I got ill many years ago, and was diagnosed with a medical condition, and passed back to the NHS who now deals with it. But this a fairly well-known medical condition. It's just that whenever I've googled my current symptoms, it seems to point towards a few medical conditions which aren't taken seriously, sort of like ME where some doctors don't "believe in it". This time around I'm worried about being diagnosed with something quite obscure that nobody's heard of, and I'll have to keep explaining to doctors what it is.

That's absolutely disgusting how you were treated in relation to your children. I shudder to think how many people this happens to.

@Crinkle77

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.

Have you been tested for coeliac?

@Clipclopbipbop

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.

I can assure you that the only way my mood was affecting my conditions was that I was so fucking sick to the fucking back teeth of patronising tossers telling me that I was in pain because I was depressed when I was actually in need of a biologic medication and some physiotherapy, I asked if they had considered the possibility that I'm not particularly happy at the moment because I am not being allowed to access treatment for my already diagnosed autoimmune and connective tissue disease. And the reason I 'thought' I had a condition was because I tended to believe the multiple consultant rheumatologists I'd been seeing since I was five years old.

Eventually I started on Biologics and long term physiotherapy (plus some other medications, including regular and fairly disagreeable intraarticular steroid injections) and I'm as fine as I can be, considering that the aforementioned patronising wankers delayed things so much in their desperation to make it all a mental health diagnosis/all my fault for not thinking happy thoughts, I've sustained permanent damage in multiple joints, bursae and tendons.

Exactly. The main reason why a lot of undiagnosed people burst into tears in appointments is because of the stress caused by doctors not listening. And even once you're diagnosed, it's still very emotional because you still resent all the doctors of the past who didn't listen to you, who potentially made your health worse because many medical conditions can be better kept at bay if they're dealt with early, before extensive damage has been done.

Referring people to counselling is just what doctors do when they don't really know what's wrong. In fact, sometimes it can end up being even more harmful because the time spent in counselling would be better utilised in finding a medical doctor who can actually help properly.

10 years ago today (bizarre coincidence) my 2nd rheumatologist told me there was nothing more that could be done for me and that they had to keep me going as long as they could, I was 42

I’d been ill for almost 10 years with M.E fibro cpps brittle asthma, could only walk 50 meters with 2 sticks and used a wheelchair. I was literally dead in the water

Today I walk unaided, energy is reasonable, asthma well controlled and fibromyalgia is manageable

6 weeks after my life was written off, by chance I started an elimination diet and realised that a rash I had for years went away

As a nurse I knew that dermatitis herpetiformis had been queried but dismissed previously as blood results were negative, however I also have an immunodeficiency

It turned out I was a very severe coeliac but missed due to the immune deficiency, I was profoundly deficient in every single vitamin and mineral so my body had shut down

This was all confirmed by a specialist, I’ve been left with some permanent damage to my nerves but have a nice life now, incidentally both my children were affected too and now follow a coeliac diet

Be aware that some autoimmune conditions can give you symptoms years before blood tests turn.

I spent a lot of my 30’s feeling very unwell and being told that it was all down to depression and anxiety, eventually I stopped going to my GP- in my mid 40’s I was diagnosed with a rare autoimmune disease, inflammatory arthritis and blood clotting disorder.

@Evenstar thanks. Gentle exercise is fine and I do go for walks and stuff like that.

Thanks for all your replies so far. I guess I just have to keep on fighting for someone to listen and keep researching doctors.

Just in case any of you aren’t aware we do have a Chronic Pain board now if you wanted to come over and ask questions or chat a bit www.mumsnet.com/Talk/chronic_pain

That's a good link, thank you.

I have depersonilsation from on going trauma as a child. Instead of showing the stereotypical ptsd symptoms, my brain disconected itself from reality. The closest thing i can compre it to is when you stand up extremely fast and your head gets weird? mixed with feeling dream like when your tired. It makes me prone to a lot of headaches. I've had it every day since it started 8 years ago. It makes me confused, bave trouble with memory and remembering things that simply happened yesterday. I nearly failed 3 different courses at seperate colleges from how hard it was to function in a public setting. Its crap.

As a teenager and now a young adult I've been back and fourth to doctors, I have known what it was since day 1 and voiced it every single one of them. You bet they have no idea what it was.
At 17 one tried to diagnose me with extreme fatigue disorder which eventually leaves you paralyzed with exhaustion? Told to take a pregnancy test? When I was about 20 and gained a bit of weight I was told Its because I'm unhealthy and need excersise. Was tested for thyroid, diabeties. Being given beta blockers?? Anxiety and depression meds????? And on and on. I eventually gave up until I tried one more time. I got lucky. They began questioning the day it began, were curious about my childhood and such. This led me to I ptsd group therapies which you have to do in order to get to the 1 to 1 stuff 🙃 2 sessions in and i hated it. I had a failed attempt with CBT so i matters in to my own hands.

I'm now doing hypnotherapy. I'm 5, soon to be 6 sessions in. After finding a better hypnotherapist, I still have the symptoms but I finally have hope.

Yh... I dont trust doctors too much after this. We know ourselves better than anyone, even if you tell them what you think is wrong most dont listen anyway. I found the secound hypnotherapist knew how to help me more than any doctor or counselor, it's a lot of money but worth it. Wish I reliased how helpful it was before going to all those pointless appointments 👍

I want to add that it's hard when you arent heard. I found myself questioning weather there was anything wrong me. I began to think that feeling completely out of it like I'm on another planet was normal, that everyone felt like me and I just had an issue with it. The lack of belief from doctors made me have less belief in myself. If you think something is wrong, keep going. Some doctors believe they know best and wont take you up on your suggestions. maybe they dont care enough about their patients, maybe they dont deserve their degrees cause they crap at their job.