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Friend’s mystery ill health

(85 Posts)
Newquay Tue 28-Sep-21 21:49:43

I have a friend who has seen endless “ologists” and had numerous tests and no one can get to the bottom of her problems. No one seems to be doing anything to help her. It’s so frustrating seeing her so poorly.
I recall seeing a prog where there was a group of specialists who took on cases like this-does this mean anything to anyone?

Newquay Mon 25-Oct-21 10:05:54

Haven’t come back for a while.
Friend is still very poorly.
Over the weekend she called 111 who said they’d send an ambulance (hurrah!) but then said “no we’ll send a district nurse”. Excellent, as by then I think she was having bladder and bowel problems; she shakes so much there’s a lot of typos so I can’t always understand what she’s saying but I DO know she’s had awful constipation and when she takes Movicol, like everything she takes, it burns.
Anyway, no District Nurse but a phone call from oncall 111 doc who said she needs to speak to her own GP!
Round and round we go. . .
She now says she spends most of her time in bed and that light hurts her eyes and all noise is too loud.
Anyone who called would see her DH is not in a good state himself and he’s having to care for her.
Just what does it take to get someone to “take charge”?

MissAdventure Mon 25-Oct-21 10:20:26

Would it be worth your friend having some of the blood tests repeated?
If this has been going on for some time, then the results could well be different now.
Also, from my extensive "research" via dr google, the acceptable levels in blood results can be different for everyone.
So, on paper, a person could be within the normal range, but it isnt normal for them.

ElderlyPerson Mon 25-Oct-21 10:26:24

NotTooOld

ElderlyPerson - may I ask what the problem was with using Mr Sheen? I tend to spray it around rather liberally when I decide to do some cleaning (not that often) and now I am wondering if I should desist.

I don't know exactly what was the problem. What I know is that one lady was having problems, getting nowhere with her doctor and that I saw the note about not using Mr Sheen, I told the lady, she asked the lady who did the cleaning, she stopped using it, and the problem went.

ElderlyPerson Mon 25-Oct-21 10:31:41

ElderlyPerson

Newquay

It’s quite a long list; neurologist says she needs a psychiatrist ? whoever she needs she’s not getting them

Where I worked once a lady was having problems, funny headaches, strange feelings. She was worried.

She had been to the doctor. She felt he was treating her as some sort of neurotic woman.

I then suggested she say to him "Are you treating me as if I am a neurotic woman?"

A few days later I was in a library and I asked something and the lady invited me to an area behind the counter, and I noticed a piece of cardboard with, written in marker pen, "Please do not use Mr Sheen in this area". I asked her what that was about. She explained how it affected her. Bingo!

I told my colleague. She asked the cleaning lady. Yes, Mr Sheen. She asked for it not to be used in her office. Her problems went.

Just a copy of what I wrote before, placed here for convenience.

ElderlyPerson Mon 25-Oct-21 10:38:38

Newquay

Haven’t come back for a while.
Friend is still very poorly.
Over the weekend she called 111 who said they’d send an ambulance (hurrah!) but then said “no we’ll send a district nurse”. Excellent, as by then I think she was having bladder and bowel problems; she shakes so much there’s a lot of typos so I can’t always understand what she’s saying but I DO know she’s had awful constipation and when she takes Movicol, like everything she takes, it burns.
Anyway, no District Nurse but a phone call from oncall 111 doc who said she needs to speak to her own GP!
Round and round we go. . .
She now says she spends most of her time in bed and that light hurts her eyes and all noise is too loud.
Anyone who called would see her DH is not in a good state himself and he’s having to care for her.
Just what does it take to get someone to “take charge”?

Does the General Practitioner's practice have a Sister on the staff?

If so, asking the Sister to visit might be a good approach. In my albeit limited experience a Sister doing her "round" has more time to spend with a patient.

That was all pre-Covid though, things may be different now.

ElderlyPerson Mon 25-Oct-21 10:53:17

Callistemon

Newquay

She saw psychiatrist recently who says severe anxiety and depression and prescribed something which she’s frightened to take. Her mental health nurse has recommended she’s admitted to local mental hospital. I SO hope she’ll go-IMHO she needs 24/7 care at the mo

ElderlyPerson and I mentioned coeliac disease and I can't see on the thread if your friend has been tested for that.
EP said that GPs will do this routinely but our experience is that this is not at all the case.

It is not an allergy, it is an autoimmune disease and, if left undiagnosed, will leave a person becoming iller and iller as they cannot absorb any nutrients from the food they eat.

You say your friend is now eating ready meals- if she is coeliac then this diet will not help at all.

The doctors have obviously decided that her symptoms are psychosomatic so I presume they have exhausted all the possibilities but coeliac disease is one which was often overlooked although more GPs are aware now.

I have tried to find where I put that, but I cannot find it at present.

However, my understanding was, and indeed still is, that when in the past (1990s era) a doctor would put things down to Irritable Bowel Disorder, in more recent times that clinical guidance has become to get a blood test for coeliac disease to be done as part of the assessment. I may be wrong about that, or maybe some doctors don't know of it, and maybe some forget or decide not to do that.

ElderlyPerson Mon 25-Oct-21 10:58:40

Also, when I had the well-man blood test, testing for coeliac disease was part of the routine format, but B12 testing was not. I asked about B12 testing and it was added in for me.

Maybe the format for was decided locally by the General Practioner practice rather than a national format used everywhere, I don't know.

ElderlyPerson Mon 25-Oct-21 11:08:05

Callistemon

Someone we know suffered from very slow carbon monoxide poisoning from his car.
It was years ago and I can't quite remember how it happened but the exhaust was leaking into the car. He became very ill until it was discovered.

It can happen with gas boilers too.

I remember seeing something on the BBC lunchtime programme about business years ago about some people getting ill and it was thought AS AN UNPROVEN THEORY to be because they were topping up the windscreen wash bottle in a car, van, or lorry with water rather than screen wash, and apparently the screen wash has some sort of anti-bug chemical in it, but the water was getting contaminated over time then spraying it could get droplets into the cabin and get the bugs in the driver's respiratory system.

I remember the presenter ending by saying something about well it had not actually been proven, but was it worth the risk to one's health for the sake of saving a couple of pounds on a bottle of screen wash.

Just another example of unnoticed things possibly leading to problems.

MissAdventure Mon 25-Oct-21 11:14:22

www.theoptimumhealthclinic.com/free-report-mobile/?utm_source=google&utm_medium=ppc&utm_campaign=46066463&utm_term=private%20me%20specialists%20uk&gclid=CjwKCAjwq9mLBhB2EiwAuYdMtSCXTCHFfxSkKS2JzVzy2GCORKlNASZ1OxmX34LR3JuJdiReJtSDbBoCPVgQAvD_BwE

Maybe your friend could try something like this.