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 the Drs checked things like folate and b12 as well? If you have issues with your guts you may not be absorbing vitamins and nutrients very well

Have you been tested for autoimmune disorders? It sounds like you need further investigations. Don't let them write it off as anxiety or depression either!

Vitamin D deficiency can cause surprising and dramatic symptoms- could that be part of it?

Hypothyroidism - low thyroid function, should be checked but does not explain everything
Hope you get an answer and feel better soon.

What are your vitamin levels like? Vitamin B12 and vitamin D deficiencies can cause petty extreme symptoms.

Came to write B12 and Vit D
I'm on injections now and Vit D tablets but was so so poorly and everything you describe.

Chronic Fatigue or EDS. Or another autoimmune as someone said.

The exhaustion and breathlessness are probably the anaemia, but there has to be a reason you keep becoming anaemic. They can't just rule out bleeding ulcers and then give up.

Sorry to keep commenting, I keep thinking of other things. If the GP doesn't know what to do next the he needs to be referring you on to specialists- have you seen a haematologist as yet?

B12 deficiency, I'd bet quite a lot of money on it.
H pylori, ulcers, taking omeprazole, these can all cause issues with absorbing b12 and lack of it can cause severe breathlessness, palpitations, brain fog, nerve pain, pins and needles, utter exhaustion that sleep does nothing to dispel (waking up ready to go back to bed is quite characteristic).

A friend of my has similar symptoms. After a lot of investigation the dr discovered two benign tumors in her ‘digestive system’ (her words, so I don’t know exactly where). They are going to operate soon, but she has an excellent prognosis.

Have you been tested for muscular dystrophy? You don't have to have a symptomatic parent to have the condition.

Do you follow a particular diet?

If it is B12 and they do an intrinsic value test which comes back negative then bare in mind that the test isn't reliable.

Many drs are rubbish with B12
Let me know if it is that as there is a fab FB support group with lots of knowledge.

Crohn's disease? Needs to be 'active' to be diagnosed, have you done a stool sample?

Crohns or Colitis?
Have you been tested for any autoimmune disorders?

I would suspect hypothyroidism too.

So did your symptoms start after giving birth? Did you lose a lot of blood during birth?

Having a baby and toddler is exhausting and very draining on your body. Your symptoms do seem extreme.

Have the anti depressants helped at all? Have they checked your thyroid ?

So many questions

Ooh, I’m not sure if I’ve had B12 specifically tested. I’ve had loads of blood tests, she normally takes about 5 phials, and each time has said its for the whole works. I don’t know if that includes B12 though.

Vitamin D is another possibility if that isn’t tested in the usual range too. Because I’ve been feeling so pathetic I spend so much time indoors which obviously can’t be healthy.

I have had a stool sample done about 10 months ago and all was well there. I don’t really get any cramps or poo issues, the only part of my digestive system that’s buggered seems to be my stomach itself. Oh, and my appetite.

The private doctor suggested CFS. I very much felt he was saying he diagnose me with that if I really wanted a diagnosis. Not because he actually thought that’s what it was iyswim.

Another thing I forgot to mention was my brain fog. I struggle to find the words I want to use and I can’t concentrate properly. I’ve always loved reading but I can barely finish a page before my mind is drifting on to something else.

Thanks so much for all the advice. I so hate feeling so useless and like I’m just sleeping my life away.

happyhappy I first got symptoms when I was pregnant with dc2 who is now 2. I put it down to pregnancy symptoms as they fitted perfectly although I didn’t suffer at all with dc1. I had an elcs with dc2 which all went well, no unexpected blood loss.

When I first saw the doctor when dc2 was about 6 months old GP suggested PND and put me on AD’s. The only reason I was upset was because I was so tired and AD’s just made me feel even more queasy so I stopped them,

Have heart issues been tested for and ruled out?
Were biopsies taken for coeliac during the endoscopy?

B12 isn't included in a full blood count so I'd double check if you've ever been tested. I felt exactly like you 2 years ago and am just now emerging from it as feeling more normal but that's with really regular (twice weekly) B12 injections

I hate to say it, but it sounds like ME (also known as CFS), it can effect multi systems of the body and yet is treated like a psychological condition- until you see a psychologist/ psychiatrist/ neuropsychologist who all say that you don’t have anything psychologically wrong with you, you have a very physical and debilitating condition.

This recent research explains the reasons for multi system issues and is a massive positive and gives hope to those of us who have been trapped with this evil condition for far too many years.

www.facebook.com/301252900007181/posts/1350487448417049/

www.huffingtonpost.com.au/2017/02/21/queensland-scientists-make-chronic-fatigue-syndrome-research-bre_a_21718178/?guccounter=1&guce_referrer_us=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvLnVrLw&guce_referrer_cs=u50HEY80WWdBAyQ6W6OkJQ

I add my voice to the crowd that say: Vit B12, Vit D, and folate deficiency anaemias, EDS and gastroparesis.

Hope you get some answers soon.