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3 years undiagnosed.
vicky8761
Member Posts: 3 Listener
This time 3 years ago, I was healthy as a person could be. And then I got bronchitis.
Ok admittedly I'd always been a chesty child, but not particularly sickly. In my time at school I actually hated that, I was never off. I used to have to tell my parents I felt sick or deliberately get in the way of the ball in PE and take a knock to the head if I wanted a day off school.
But now I was an adult, and starting out in the world of work, and experiencing the end of term slump as we educators refer to it. The bronchitis came, but the breathlessness and tight chest and aching pain, stayed. The cough disappeared, but I still felt awful. I gave it 4 months before I went to the doctor, as the shortness of breath had risen to a point where I couldn't walk across my classroom without needing a break. I was terrified they would say I was just fat and unfit. I'd always been fat, but no-one could say I didn't do sports up until now - I was forever in the gym or the dojo or the zumba studio.
After testing and proving about 11 times that it wasn't asthma, I got referred to the Royal Brompton, whose expertise was supposedly unrivalled. However, I only got to see a doctor once every 2-3 months despite having to go to the hospital on the regular for nebuliser treatments and for them to tell me they could see I was ill, they just didn't get why. Their lung function tests showed a flattened expiratory flow loop, but the x rays, CT scans and bronchoscopy showed nothing really.
Then the blood tests showed really high levels of CRP, IgG and white blood cells. And I started having nosebleeds and bruising easily from nothing, feeling weak and dizzy. And of course, on top of the breathlessness, I got chest infections about once a month to every six weeks.
The white blood cell levels are still high, I now have appointments with endocrinology, haematology and more with RBH, am advised to take vitamin C and B12, but still no diagnosis. 3 years later, and not even that many appointments because the gap between appointments is so long.
The anxiety is crippling and part of me is completely and utterly terrified that it's all in my head, I'm making it up. I know I can't fake blood tests, or spirometry, I wouldn't even know how to try, but surely if there was something wrong someone would have found out what by now?? It makes life really tough at work and i'm eternally paranoid I'm going to be fired over it. I want it to be over.
Ok admittedly I'd always been a chesty child, but not particularly sickly. In my time at school I actually hated that, I was never off. I used to have to tell my parents I felt sick or deliberately get in the way of the ball in PE and take a knock to the head if I wanted a day off school.
But now I was an adult, and starting out in the world of work, and experiencing the end of term slump as we educators refer to it. The bronchitis came, but the breathlessness and tight chest and aching pain, stayed. The cough disappeared, but I still felt awful. I gave it 4 months before I went to the doctor, as the shortness of breath had risen to a point where I couldn't walk across my classroom without needing a break. I was terrified they would say I was just fat and unfit. I'd always been fat, but no-one could say I didn't do sports up until now - I was forever in the gym or the dojo or the zumba studio.
After testing and proving about 11 times that it wasn't asthma, I got referred to the Royal Brompton, whose expertise was supposedly unrivalled. However, I only got to see a doctor once every 2-3 months despite having to go to the hospital on the regular for nebuliser treatments and for them to tell me they could see I was ill, they just didn't get why. Their lung function tests showed a flattened expiratory flow loop, but the x rays, CT scans and bronchoscopy showed nothing really.
Then the blood tests showed really high levels of CRP, IgG and white blood cells. And I started having nosebleeds and bruising easily from nothing, feeling weak and dizzy. And of course, on top of the breathlessness, I got chest infections about once a month to every six weeks.
The white blood cell levels are still high, I now have appointments with endocrinology, haematology and more with RBH, am advised to take vitamin C and B12, but still no diagnosis. 3 years later, and not even that many appointments because the gap between appointments is so long.
The anxiety is crippling and part of me is completely and utterly terrified that it's all in my head, I'm making it up. I know I can't fake blood tests, or spirometry, I wouldn't even know how to try, but surely if there was something wrong someone would have found out what by now?? It makes life really tough at work and i'm eternally paranoid I'm going to be fired over it. I want it to be over.
Replies
Scope community team
Have they given you any tips for managing your symptoms and have they put any form of plan in place to handle them? Are they still attempting to diagnose the cause?
I've had a look online for support groups for undiagnosed conditions, but frustratingly I've only been able to find groups in the US, such as RareConnect or SWAN (Syndromes Without A Name) which is aimed at children and young adults (up to age 25).
This is probably taking its toll on your mental health. Do you have much of an emotional support network?
Scope
The danger I feel is tho if you push doctors, they may mark you as Munchausen or another syndrome (I forgot the name) where the person thinks they ill but they not, once you get put in either of these categories you would probably have a very hard time in been taken seriously.
As an example I have had my OT tell me I have clear neurological symptons, same with my GP, but every single visit to a neurologist because the symptoms are not present during the examination (I am not one to fake), they will just discharge. Consultants seem very hesitant to diagnose vs GPs and other lower down the ladder HCP's. They seem to want clear visible evidence in front of them at the time. Although I do have a slipped disc diagnosis. The claim is that will only cause me minor issues (less than what I have).
I dont know what to suggest, as the problem I have experienced is if you try and push for a diagnosis, you agitate HCP's, and cause yourself stress and anxiety. It is kind of easier to just move along. But at the same time its in the back of your head that if diagnosed and properly treated there can be a improvement of quality of life, and also better recognition from peers for your condition.
My sister advised me to squeel out in pain when a consultant examines so as to get the message across, but I see that as been dishonest and have never done it.
Scope community team
Scope
Hi, is this EDS?
It took several years to get his medication right, but he is stable and has routine blood tests to monitor it.
good luck
Thank you for your kind words. I had my first clinic appointment yesterday where they discovered my kidneys have been damaged, and further diagnosed me with SLE. I won't pretend I haven't been a bit weepy and such since this, but it's nice to have a name to put to it. i've used a lot of resources at Versus Arthritis and Lupus UK, particularly the information for employers, to explain to people at work. I'll update where we go from here as I know!
Keep smiling folks!
I'm glad you have a lot of resources and you'll be able to explain things to your employer.