My mum had what we thought was long Covid. We looked after her and took her to appointments etc . As a family we are well informed, articulate and proactive so quick on managing symptoms and and getting appropriate medical help.
Her consultant thought she probably had cancer of the bowel or Polymalgia RHEUMATICA and she underwent scans etc - so far all clear. Bowel and bladder cancer referrals were put in at this time.
Eventually her energy levels were soo poor that we had to have her admitted to hospital for tests and to manage severe anaemia. While there she had episodes of tunnel vision which they hospital were completely uninterested in. I ended up calling an optician for advice as I didn’t understand why they were not fussed. In fact one of the consultants recommended that my mum go and see an optician when she got out.
DO NOT IGNORE VISION DISTURBANCES
DO NOT LET THEM FOB YOU OFF
My mum lost the vision in her eye a few days later and she is completely devastated.
it turned out she has a disease called GIANT CELL ARTERITIS which means steroids indefinitely. It is a medical emergency. I am putting the symptoms
at the bottom if this post because I had never heard of it before. To be fair she didn’t have any of the symptoms really so I understand why it wasn’t diagnosed on time. But I will never forgive them for ignoring episodes of tunnel vision - her eyesight could easily have been saved.
ADVOCATE FOR YOUR PARENTS BECAUSE THEY ARE REALLY VULNERABLE TO BEING FOBBED OFF
BE AGGRESSIVE ABOUT MANAGING SYMPTOMS
CHECK THAT ANY REFERRAL HAS BEEN PUT IN - my mums bowel cancer referral was delayed by two weeks because of incompetence
SYMPTOMS DONT ALWAYS FIT exactly - my mums only symptom was tunnel vision.
PLEASE PLEASE DONT ASSUME ITS LONG COVID
SYMPTOMS OF GIANT CELL ARTERITIS
(Inflamed temporal arteries)
The most common symptoms of giant cell arteritis are head pain and tenderness — often severe — that usually affects both temples. Head pain can progressively worsen, come and go, or subside temporarily.
Generally, signs and symptoms of giant cell arteritis include:
Persistent, severe head pain, usually in your temple area
Scalp tenderness
Jaw pain when you chew or open your mouth wide
Fever
Fatigue
Unintended weight loss
Vision loss or double vision, particularly in people who also have jaw pain
Sudden, permanent loss of vision in one eye
Pain and stiffness in the neck, shoulders or hips are common symptoms of a related disorder, polymyalgia rheumatica. About 50 percent of people with giant cell arteritis also have polymyalgia rheumatica.
When to see a doctor
If you develop a new, persistent headache or any of the signs and symptoms listed above, see your doctor without delay. If you're diagnosed with giant cell arteritis, starting treatment as soon as possible can usually help prevent vision loss.
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