AIBU to ask people on the internet to diagnose me?

[WhenIWasAYoungWarthog]

Well, obviously I am but I’m fed up of feeling shit and no one knowing what the problem is.

I’m mid 30’s and was very sporty until a couple of years ago when I first started having symptoms. I’m constantly exhausted and out of breath. To the point we’ve had to move my bedroom into a downstairs room as I need to sit down for at least 5 minutes to catch my breath after going up a flight of stairs. I sleep 10 hours a night and need at least a 2 hour nap in the day or I start vomiting and fainting. I no longer drive as I don’t feel safe after I fell asleep at the wheel last year (driving a route I knew, having had plenty of sleep).

I have no appetite and I’m constantly nauseous. I vomit at some point most days and around a year ago started vomiting blood. An endoscopy showed two stomach ulcers but no H Pylori. A further endoscopy after I’d been treated with omeprazole showed ulcers had gone but there was still inflammation.

I’ve had iron infusions as I’ve been anemic 4 times in the last 2 years. I eat as healthily as I can and take iron supplements but still seem to have dropping iron levels. I’ve also had a colonoscopy which showed nothing unusual. Brain scans as history of Brain Cancer in my family, nothing unusual there. Lung function tests, again nothing unusual. Blood pressure and blood tests all normal too.

My GP is at a loss as to what the matter is and has offered to refer me to a pain management clinic and put me on AD’s . I went private and they repeated all the tests again and they can’t make a diagnosis either. One doctor asked me if I wanted it to be an autoimmune disease.

I don’t want it to be anything at all. I just want to be able to have my life back. I can’t do anything. Dh is working crazy hours to support us, I can’t claim any kind of benefit as no one knows what’s wrong with me. My little 2yo has to go to nursery 3 days a week as I don’t have the energy to look after him.

Has anyone got any suggestions at all? Or, maybe someone’s had something similar and cured it by hypnosis or something (trying to be optimistic!)

Have you ever had an ECG or a cardiac echo? The shortness of breath is something that needs further investigation.

Poor you, OP. Sounds horrid

My colleague had something very similar and was diagnosed (eventually) with pernicious anaemia and low vit D - she was given vit D injections and said it was like coming alive again. I would try asking about it!

Yes you are losing iron (blood) from somewhere (still if you are still requiring iron transfusions)

I had vitamin d deficiency and a lot of your post sounds familiar. Even if you haven’t been tested for it, I would recommend taking supplements now anyway. Chances are that you’re deficient if you’re housebound anyway

Well actually not a lot of your post, but the lack of energy and constant fatigue.

You need to see a rheumatologist OP. where in the country are you?

I second the ECG and Echocardiogram suggestion.

Have you been tested for atrophic gastritis?
www.medicalnewstoday.com/articles/322153.php

I second @Disneydayout

Darkening skin was missed as a symptom by our GP, achey bones, tiredness, sickness, having to stop constantly when walking, weight loss, lack of concentration were just some of the huge list.

Could be a sign of Addison's, but unfortunately lots of illnesses have cross over symptoms.

Hope you get diagnosed soon.

ian how would you know she is 'still losing blood somewhere'? She has been told she no longer has ulcers, her periods used to be heavy, and she has had colonoscopy and endoscopy. There are other reasons you know.

Do you have a red face?

I’m another one to suggest Addison’s. took a long time for my other half to be diagnosed.

@inspace- because she is still losing iron despite iron tablets and infusions. Presumably previously not anaemia but now is. Iron deficiency anaemia = blood loss unless proven otherwise.

ian I’ve had stool samples tested for blood that were clear. Also had a kidney function test earlier this year that I forgot to mention, that was fine too. My GP seems to think that the reason I’m anemic is due to omeprazole stopping absorption. But from what I can gather that only prevents absorption in my stomach and doesn’t explain why iron levels fall after an infusion.

It’s frustrating because I don’t know who I need to speak to. GP will refer me to someone who will do one set of tests, they’ll come back fine, then I’ll go back to GP she’ll refer me to someone else etc etc. There must be someone who can look at everything as a whole and come to some conclusion. I went to a gastroenterologist privately as, apart from the anemia, stomach ulcers and inflammation was the only thing that I’ve had properly confirmed as being there.

Lyme disease would be my guess

Warthog have you had an ECG and an echo of your heart?

It might be a good idea to sit down and write out all your symptoms down methodically system by system starting from the top down.

Eg. Neuro / Brain - so all the brain fog type symptom, any numbness / tingling anywhere. Any issues with your eyes. And then keep moving downward. Write everything down no matter how mundane it seems.

It might also be worth keeping a symptom diary for a month or so. I did this as I get a lot of problems with joint swelling, pain and muscle problems that come and go. It was very useful. As your symptoms are so diverse it might also make sense to write what you’ve eaten and what you’ve done to try and identify any potential triggers.

Apologies if some of this has been suggested - I read the beginning of the thread bit got caught up with the DCs

bell I haven’t had any heart stuff done at all apart from GP listening with a stethoscope and she said it sounded fine. I have always, even when I used to do loads of exercise, had a highish resting pulse of about 85.

What is your blood pressure like? Do you crave salt?
Just another two symptoms of Addison's disease

My blood pressure is fine. I don’t crave salt, the only thing I actually enjoy ‘eating’ is ice. It’s the only thing that doesn’t make me feel more nauseous.

warthog I really do think it’s important to get any cardiac issues ruled out. Listening to heart sounds is not the same as an ECG or echocardiogram. The relatively new onset shortness of breath in someone your age is concerning.

I really hope this all resolved for you.

Thanks bell I’m going to speak to GP about seeing if someone can check out my heart. Hopefully one day I can return to being a fully functioning human again!