I live in the UK, and every time I speak to a doctor I feel like I just get brushed out of the door without an effective overview. I have had a chronic cough for years, I get ill every 1-2 months, my energy levels have deteriorated drastically in the past few years, but whenever I go to the doctors I get a quick “oh you have a cough, it’s asthma” or “oh you have a cold, take paracetamol”. I don’t think I have any serious issues, but it made me wonder…
I don’t understand how people get taken seriously enough to find chronic illnesses, especially people that are diagnosed with obscure and rare illnesses. From my experience, if a problem isn’t obvious within a 15 minute consultation, the most common affiliated illnesses will be assumed.
Comments
Go to doc.
I assume you don’t smoke or anything correct?
Doctors in the UK have to follow an NHS protocol. Therefore they have to try the most easy / cheap / common solution for your problem. The assumption being, if it doesn’t work you will come back and say I’ve tried XYZ it didn’t work, what next?
Often you have to push for a referral to see a specialist.
I recommend going to the GP, with a list written down of your symptoms, how long it’s been happening, what you’ve tried and has / hasn’t helped. Explain how it affects your daily life, how it affects work, your relationships and quality of life. Tell them you’ve come to see them x many times over the last few years and now you want answers. You want to be referred to a specialist who can help you get to the bottom of the situation.
Having made many friends over the years from all over the world, I’ve come to learn that people who suffer from chronic illnesses are pretty broadly fucked over. They shoo you away a hundred times and then the hundred and first time they decide it has to be psychiatric. I know one person who got a legit diagnosis after like 10 years.
Keep at them!
Multiple scerolsis is one that takes a while for them to diagnose. 15 years for me 🫠
I think it’s hard for Dr’s to figure out exactly what’s wrong with people, it could be any number of things and they don’t want to misdiagnose something. Of course some probably get jaded by doing this everyday so may not take it seriously enough.
My dad when he was my age had purple toes and trouble walking and went to 5 different doctors before finally finding one that knew what his condition was and said it could be fatal if not looked after.
Give them data. They love data!
That means, take daily records of any and all symptoms for, say, three months.
You can have ChatGPT come up with a thorough list for whatever your symptoms or whatever you suspect you might have. I set up a form on Google Forms that I sent to myself and kept in my inbox. Every evening, I would answer all the questions in my form and send it to the Excel sheet in Google Forms.
I kept a health diary for almost three months. I measured things I was curious about, energy levels, fatigue levels, sleep quality, joint pain, migraine stages, pulmonary notes, and the weather and wind. I included the questions they usually ask at the beginning of each appointment.
I wanted to see if I could find some patterns.
I have Sjögrens, chronic fatigue, and reactive lungs, and was being treated for each but would get these raging full-body inflammatory events any time I would go out in the cold or speak at length. I had talked to all of my specialists about it and no one could offer any help.
–I found out that 1/my migraines are triggered by shifts to South-southeast wind during and after rain fronts.
–I found out I actually sleep better that I thought I was and that the majority of my days I do not have anxiety or depression
–the anxiety and the depression come as part of the migraine prodrome
–prolonged conversation causes my lungs to burn, which then sets off a histiamine/adrenaline response that triggers full-body inflammation, including another type of migraine and would often lead to me having to spend two or three days in bed recovering (thankfully I was WFH).
Once I had 80 days worth of data, I made a PowerPoint presentation (!) with graphs and pie charts (provided by Google Forms). I led with the things they usually ask about and then went into my special topics of research.
I showed it to each of my doctors during our check-ins. THEY LOVED IT.
Best: my pulmonologist changed my treatment and put me on a different antihistamine to calm down the histamine response in my lungs–a life-changing improvement as I no longer have full-body inflammation events.
So:
Identify your variables. For you OP, capture data on your cough. When does it appear, how long does it last? Are coughing fits related to weather or food or stress?
Collect data over enough time to allow for patterns to emerge
Present your data in a clear manner (you don’t need PP, you could write it all out on paper)
Also, write down any and all questions. Go into the meeting with your papers or phone with PP in hand and sit down and say “I’ve made a list of questions. I’m here about x. I have collected some data about my experience, let’s take a look.”
I think it’s a mixture of different situations that can cause things being mixed.
For example my son was discovered at our first prenatal exam that there may be an issue. He’s amniotic fluid was low, not low enough to be risky. But enough to have a more serious ultrasound. It was then discovered he only has one kidney. But we were going to know how it’s working until he’s born. And see how long it took for his first wee. Luckily it was straight away.
With my daughter they did all the checks at birth and was given the all clear. Eventually we noticed her crawling wasn’t the greatest. She would bump shuffle more. I kept asking if there was something to it. And was told it’s nothing to be concerned about it’s just a habit and she’ll grow out of it. So we saw a doctor who told us he has no idea(I actually preferred that response). And sent us to some specialists. Turned out at some stage during development her hip had actually dislocated and built its self a new socket.
I would maybe post online in a local group asking recommendations for a good GP first. Then I would write down all of your history on the matter, what your other GP’s have tried and express you do not feel you are being listened to. Explain to them that you feel like more investigation is needed and ask if you can be referred to a specialist. Speak up for yourself and if you feel rushed or your Dr interrupts you to rush you out, say something like “look I understand you are busy but I really need your help here and I need you to listen to me”
I’m in Canada and for a long while I knew something was wrong. I would get clusters of sores on my shoulder and face(thought it was cystic acne). Drs would do bloodwork and say all good.
By early 2023 I had developed acute necrotic ulcerative gingivitis. One dentist said I’m just got doing proper oral hygiene and scared me. Another dentist prescribed amoxixillin. I lost over 30lbs because eating solids hurt.
Then in late 2023, I was supposed to have surgery for turbinate reduction and septoplasty for my nose and when they did pre surgery bloodwork, my white blood cell count was 1.3 when normal range is 6.5-10. So they postponed my surgery and had my GP send a referral to a hematologist/oncologist.
6 weeks later I was at the local cancer centre for a bone marrow biopsy. Then weekly visits for bloodwork. My neutrophil count was 0.1. Neutrophils are white cells in charge of infection control. Which is why my mouth had ulcers and my skin had sores.
Within 2 months I was diagnosed with Chronic Idiopathic Neutropenia. Had likely been an issue for years but got worse in 2023.
Years of bloodwork claiming to be normal but was actually lower than normal, but borderline enough no doctor was concerned.
I am now on weekly injections to force my bone marrow to make extra white cells. My body destroys the white cells but now because I make double what is normal, when my body destroys them, my range doesn’t into the danger zone anymore.
It could have been caught earlier and not to the point that a fever could kill me.
Problem is, a lot of doctors focus on abating the symptoms without finding the root cause.
I love the NHS. I worked in GP surgeries for 20 years and now I work in a hospital. But, it can be difficult to be listened to, especially when your symptoms aren’t obvious. Make a diary of your symptoms, and how you treat them, (this will give you as much insight as the doctor). Make a list of questions you need to ask, and add to it as you think of them. Then think about what you need going forward, I’m guessing referral for investigations. Make your appointment when you’ve got all this ammunition, and take a friend for support, because they’ll often advocate for you when you feel defeated. Ask the surgery if they do double appointments too, that gives you time to discuss things properly. Good luck.
In Nordics I walk to doctor. Usually takes few days if my problem is not urgent seeming.
First they check my symptoms and suggest a solution and tell me to try the suggested cure for 3-4 weeks, if no help they tell me to return.
Another fix is suggested and they tell you to try it for 3-4 weeks.
If this is not enough, you usually get send to further testing even with milder symptoms.
Ofc if your situation gets worse they will send you to tests earlier.