Unknown diagnosis no time : Wanting some... - British Liver Trust

British Liver Trust

36,594 members17,991 posts

Unknown diagnosis no time

Helpless_daughter profile image

Wanting some input on my mother. She’s 66 and has started losing weight for over a year with little appetite and slight lapses in memory but not super debilitating. She was able to live independently and did not affect her day to day really just couldn’t remember some words every now and then. This was noticeably getting worse but still not so problematic that she had to stop driving etc. we thought this was the beginning of Alzheimer’s disease which her own mother suffered.

We took her to see a memory clinic two months ago whereby she had a brain CT scan which returned with normal looking brain for her age and no signs of Alzheimer’s. she was here prescribed a antidepressant Mirtazapine. She took this for two weeks and then stops on her own will as it didn’t make her feel nice.

Fast forward 3 weeks and her ankles begun swelling incredibly. She took herself to the GP who ordered CT scan, X ray and bloods. CT scan showed some free fluid in abdomen and blood tests came back with lower levels of haemoglobin. She was sent to the ER as her confusion increased rapidly and had a fall overnight.

Since admission to hospital 3 weeks ago, she has a major decrease in red blood cells, white blood cells and platelets. She has lost a further 10kg. She’s had to have a blood transfusion to keep her in the safe range but the haemoglobin levels dropped from 10 to 6 in two weeks.

They found blood in the stool and due to this as well as her weight loss and eating changes they originally thought it could be bowel cancer so a scope was requested but due to her state of health, weakness and low levels of electrolytes they deemed this not safe at this time.

Further CT scans and X rays were conducted as well as ultrasound all coming back with nothing. No mass, no organ damage, no noticeable lesions, nothing. Just the free fluid in abdomen. Meanwhile in hospital she is completely confused now and suffering delirium for unknown cause. She will not eat or drink much. She’s come in and out of awareness every few days she might come to clarity in the mind for a few hours but then back to confusion. She’s very tired and sleepy all day and night.

Then she begins to get fevers every night at the same time .

Doctors search for infection in the body taking blood cultures etc and nothing is to be found. A week passes and no infection found. So they order a PET scan which she has and shows a few lymph nodes in the armpit, around the heart and aorta to be highlighted moderately. Nothing highlighted in the bowel or anywhere else. They think now because they cannot find infection in the body, that it is a blood cancer. They need to do a biopsy of the lymph node to know further details but this is taking a while because my mums mental state and our laws regarding consent.

Any thoughts on what this could be. The scans do not show up anything super obvious. But my mum is acting and feeling like she is in end state cancer. She does not have too much weight to lose at this point and not enough time.

Why is her mind going crazy as well? Could it be caused by low blood cell count. Why the low blood count and could it be a blood cancer that has spread deep into her bone marrow without showing this on the PET scan?

Written by
Helpless_daughter profile image
Helpless_daughter
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Laura009 profile image
Laura009

So sorry to read your Mum is so poorly. Has she had a brain scan? My Father had AML (leukaemia ) for several years which was controlled by a daily pill. It later sadly caused a brain tumour which does create confusion which can be treated. It may be worth asking about?

Hope they can confirm a diagnosis for you soon

Keep us posted.

Best wishes Laura x

Helpless_daughter profile image
Helpless_daughter in reply to Laura009

She had a brain scan done 2 months ago and it was all clear. Looked like a normal 66 year old brain.

We are sorry to read that your mum is so unwell, it must be a very difficult time for you all.

Has anyone discussed the possibility of liver disease? Did the CT show up any problems with her liver?

Unfortunately, no one on the site is medically qualified to advise you.

If you are in the UK you can call our liver nurse helpline on 0800 652 7330 and we can have a chat.

We hope that you are able to get some clarity soon from the medical team and a plan going forward.

Warm wishes

Trust1

JAMV profile image
JAMV

Helpless_daughter was her b12 checked? Hope she is well now

You may also like...

A diagnosis of Cirrhosis.

for follow up scan and blood test and contact with a consultant it’s all moving now, scan mid March...

Unknown liver ‘lesions’

liver but subsequent CT , MRI and Pet- CT scan and I think bloods still can’t definitively say what

liver cirrhosis for unknown Reasons

How do you handle the unknown and uncertainty?

Hep C w/moderate Cirrhosis and 4.6 cm mass (not yet confirmed benign or cancer)

this appointment. She has been experiencing fluid build up in her abdomen and a CT scan in ER...