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Medical help for daughter

(23 Posts)
Madmeg Wed 02-Oct-19 13:20:20

Hi everyone.

Months ago I posted about her but I don't know how to find the original, so sorry for that.

She's 39 and been ill for all this year. It started with a swollen ankle, then other swellings in wrists and fingers. Red hot joints turned freezing for no reason; pain in limbs then in neck, shoulders, back; unable to use a keyboard, chop vegetables, handle a spoon; falling asleep at 10 a.m.; unable to sleep at night; sometimes no feeling in feet so dangerous to drive; hair falling out; unable to think straight; the list is endless and new things appear all the time. Pain is barely manageable even with strong painkillers and make her drowsy.

She's seen a rheumatologist, neurologist; cardiologist and dermatologist - the latter cos the others all blamed him for prescribing a particular drug for her chronic acne. She hasn't taken that in months. All this was private and when she ran out of her allowance I've paid the last £1,000 of tests.

She's had blood tests, CT and MRI scans, x-rays, nerve tests and more. Several issues have been discovered such as slightly loss of kidney function (now resolved), slightly low blood pressure (ignored), a positive P-ANCA level (ignored) and some evidence of brain deterioration not usual in people of her age (ignored).

On Monday the consultants were had a multi-disciplinary meeting but the Secretary can only tell her "not to worry" about the outcome and a report will be sent soon.

We suspect this will tell us nothing new (i.e. no diagnosis and no suggested treatment).

Can anyone suggest what she does next? She will try anything as she is desperate to get back to work and be able to look after her children properly.


Liz46 Wed 02-Oct-19 13:26:37

I'm not a medical person but if you are in GB, have you tried the NHS? I have a serious illness and they have been fantastic and I am much better at the moment.

Dee1012 Wed 02-Oct-19 13:30:34

Just a thought but how about asking for a referral to a pain specialist/pain clinic....

Hetty58 Wed 02-Oct-19 13:37:45

I was thinking the same, Liz, as I'd want the tests repeated. Some autoimmune problems are difficult to diagnose and tests give unclear results. Has she seen a dietician? Exclusion diets can uncover allergies (loads in our family) that can start at any age - so might be worth a try.

Madmeg Wed 02-Oct-19 14:42:22

Thanks for your suggestions. We are great believers in the NHS and have always had excellent service - until recently. I have a foot problem and was referred for an x-ray. The x-ray appointment was quick but my GP still hasn't had the results six weeks on. In DDs case the earliest appointment with the first specialist (rheumatologist) was 5 months hence and she went private cos she had health cover with work. That has mostly run out now so it will be back to the NHS. I don't imagine they will do any better as the consultants she's seen all work for the NHS as well as private so she'd likely see the same people.

She's just started a pain management programme and only this morning we talked about dietary changes so maybe that's next on the list.

I just wondered if there was some area of medicine that could pull together all these small issues that have been discovered.


Anja Wed 02-Oct-19 15:26:27

Go back to GP and insist on a complete review.

Ellianne Wed 02-Oct-19 16:34:44

I spent a year or more visiting private consultants all experts in their own field, paid for by my work health insurance policy. I think sometimes all the results are not tied together as effectively as the NHS and I am still chasing an answer. Auto immune diseases are so complicated, vasculitis was suggested to me by one doctor, but my gp hasn't taken it any further because he thinks everything sinister has been ruled out.
I wish your daughter luck and hope she can soon resume a normal life.

Hetty58 Wed 02-Oct-19 17:44:15

Has she had a MRI of her spine? My back problems cause sleep difficulties and some of those symptoms, but not painful, swollen joints.

Sleep deprivation and depression are quite disabling. Silent celiac disease (with associated thyroid problems) can cause an array of non-typical symptoms (often not digestive) too.

It sounds as if they've checked for common causes so must continue investigations for more unusual ones. You may have to be quite assertive about insisting that they do so!

pinkquartz Wed 02-Oct-19 17:54:58

I am sorry to say that after 28 years the NHS still cannot say why my health is in such a poor state even though I am clearly severely disabled and no-one ever contradicts how ill I am.
Also they diagnosed some of the illness, it seems I have at least four different ones. But the core of the illness has no name and no treatment. Only management.

The NHS can only pinpoint with the tests they have and I believe they are not really as good as is needed in this modern world..

I was diagnosed with Lyme Disease many years ago after seeing a private doctor but there is no help in the NHS. You need to be diagnosed within 3 months and I was outside that short time.

So I would say that if you can afford to go to a private doctor and you will need to research for one that you want to go to.

If I hadn't seen a private doctor I would still be bedbound, now I at least can sometimes leave my home in a wheelchair.

I am so sorry that your daughter is suffering this way. I hope you can find the help she needs.

I do recognise some of your daughter's symptoms. If you want to PM me I can give more detailed info.

Madmeg Wed 02-Oct-19 21:12:22

Thank you friends. Such a variety of views - which is what I need. Interesting comparisons between private and NHS. One day soon I hope we won't have to choose.

None in our family is good at insisting on things, so we have to learn to do it.

Elliane, vasculitis has been suggested too.

Hetty, not sure what her MRI covered, but will ask. She has occasionally suffered back pain but not recently. She does not sleep well (never has, even as a baby she was hard work - but I loved her just the same!).

Pinkquartz, Lyme disease was suggested in the thread I can't find, but she's had these issues since February. I will bear it in mind cos she does take the children on woodland walks.

If I thought it would help I would pay everything I have, but DD is reluctant to agree and certainly wouldn't expect it (which is why I would offer it) and fortunately her sister would agree with me.

I think I have been very lucky in life in that none of my family have suffered so much, so young, and it has come as a shock to encounter this situation.

So your support is very welcome.


Jaffacake2 Wed 02-Oct-19 22:45:21

Has your daughter had a brain and spinal scan ? Her symptoms sound similar to mine with pain in neck,shoulders reduced sensation and intermittent weakness of limbs. This has been due to a chiari
malformation at base of skull. Maybe she has this.

NotSpaghetti Wed 02-Oct-19 22:58:55

I am a firm believer in choosing your consultant very carefully. You can do this even within the NHS. Check out exactly who you want to see and ask to be referred to that particular consultant.

Make Google Scholar your friend! You can see there the papers and studies your chosen consultants are contributing to. This way you can choose someone who has a particular interest in the problems your daughter may have, rather than a general interest.

There is also a website where you can see what consultants have said about other consultants - very interesting.

I also like my consultants to be not too old to have new ideas and not so young that they are less experienced! Ageism I'm afraid....

And if I have whittled my choice down to two I generally would go for the one who has worked abroad- ideally somewhere with advanced care.

Good luck! It must all be hugely frustrating.

Madmeg Fri 04-Oct-19 01:21:08

One suggestion from one of the specialists was that she could have suffered a strep throat during what she imagine was a very bad cold or possible the flu (we all know that a bad cold is not flu) and she does recall such an illness in the autumn of 2018. So the suspect was Rheumatic fever. The blood test she had last week showed a reading of 200 whatever and apparently "normal" is 0-200. So she is right at the top end of normal after nearly a year. But no consultant seems fazed by that.

Another interesting one is that she went for a free BUPA healthcheck in December 2018 and when the nurse tried to extract blood for a blood test she seemed to "hit a nerve". The pain from this lasted about 4 hours. Could that have triggered some action in her body that could be the cause of all these obscure symptoms? The doctors are all saying not.

Anyway, after a tearful morning, she is intent on "doing her own thing" if her GP can't suggest anything else, and it is my encouragement that is keeping her going. And so, friends, I need YOUR encouragement to keep ME going so that I can support her. She's a brilliant young woman, highly intelligent, a great mother and wife, and the best daughter I could wish for.

I'm sure that all of you who've told me of your problems are equally great people, and I wish you all the best, and thanks for trying to help me. Keep it up please cos I find it so hard to handle.


BlueBelle Fri 04-Oct-19 06:58:02

I am another who suggested Lymes disease in your last thread and I still think that could be your answer

Missfoodlove Fri 04-Oct-19 08:29:40

The symptoms you describe sound as though it could be an autoimmune disorder.
If her GP is sympathetic a low dose steroid could help whilst further tests are carried out.
This link will give more information.

Ellianne Fri 04-Oct-19 09:16:24

I found that the doctors weren't really interested in what the triggers were for this type of illness but more in looking for the correct diagnoses which was far enough. The problem is when they don't go any further than initial tests and then just leave you with no answers or treatment. It's so hard and debilitating and I can sympathise with you and your daughter.

NonnaJazz Fri 04-Oct-19 15:54:48

Sorry to hear about your daughter. Has your DD had her thyroid levels checked? Her symptoms are similar to those of a poorly functioning thyroid. Doctors seem reluctant to to do more than one basic test for this which often doesn’t pick up those with the autoimmune version. You can get full thyroid testing done privately which looks at the whole picture...might be worth a try....look online maybe?

Madmeg Sun 06-Oct-19 22:33:36

Thank you all. More things to think about. We will explore them all. I only learnt today that she has another symptom in that her foot can suddenly go dead, which is pretty dangerous if she is driving at the time. I also learnt that her hair is falling out - not in handfuls but a bit at a time, more than usual. Is that hormonal do you think?


Madmeg Sun 01-Dec-19 01:30:54

Wow, I managed to find my thread again!

Humble apologies to anyone who has offered advice and I've ignored it - not intentionally, I assure you all.

Daughter is no better. The likely diagnosis is going to be given at her next appointment with the rheumatologist at the end of January, which is Fibromyalgia. This does seem to fit all her symptoms and everything else has been ruled out.

We did not realise how common this illness is, how difficult to diagnose, how much it goes undiagnosed and unreported, and how much pain and distress it causes to the sufferers and their families.

She has some okay days, some not bad days, some terrible days - and all without warning. She cannot pinpoint the "trigger" that many find prompts the onset of the illness. It will be lifelong and there is no cure. Treatment is hit and miss, trial and error. Her GP (and some of the consultants) seem open to agree to her trying anything that might help so she still has a few tests to undergo. Similarly with medication, none of which has helped so far.

Most of the time she is positive, hopeful, and planning ahead, helped by supportive family, a fantastic husband and two lovely children, but at other times she is in the depths of despair. Her life will never be the same now.

She is intent on trying to get back to work in the New Year, on greatly reduced hours. We aren't sure how this will pan out. She works for a major international company and before the illness was being put forward for promotion (again). On the one hand her boss insists that should still be in line for promotion but at the same time the Occupational Health team at work are telling her that from January she will have to sign a new contract that will reduce her income to about 25% of her current level, and promotion will never happen. i know that none of you can help with this, but there ARE higher level jobs she could do even on reduced hours, and we wonder what the law says about employment of disabled people (we are told the Fibro is a recognised disability now). She has 20 years experience with this company, has won awards galore with them, but despite her progress her salary isn't great, and 25% is definitely not enough to live on.

It must be very difficult for employers to have to "carry" disabled workers but the law is the law - not that we know what it says! Anybody any ideas on that, or who could advise her?

It isn't just the money (her husband will have to up his hours and volunteer for more overtime - and he will) but her self esteem. She is a worker by nature, all the family members are, and she thrives on work pressure and the success she achieves. We appreciate she will never reach the level she was previously aspiring to, but she wants to at least feel that she can contribute both to her family and the company.

Despite being disabled, she is determined not to be disabled, if that makes sense.

I don't think her symptoms are as severe as some people I have heard of with this illness, which is a relief for now, but do you think she is expecting too much, too soon?

Well, she has to face it, that is a fact. It breaks my heart, but other parents have faced worse for their children. We need to all be strong - and realistic - and count our blessings.

If anyone has any advice re help for fibromyalgia sufferers please let me know.

Also we know nothing about state benefits (seems you have to be dead these days to get anything!) so where does she go for advice on that?

Thanks everyone for listening. It really helps.


Nannarose Sun 01-Dec-19 07:46:41

Can't help with the other stuff, but CAB or Turn2us for benefit advice

TwiceAsNice Sun 01-Dec-19 08:37:03

There is a Fibromyalgia society if you google it for support. Also just in managing pain I found Acupuncture really helpful. Some GP surgeries have a GP who is trained in it but private practitioners are not expensive. Might be worth a try for her.

EllanVannin Sun 01-Dec-19 09:14:54

There is a specific blood test for the symptoms of fibromyalgia----it's called an FM.a test where levels of cytokines are examined and if there is a low level it indicates that the patient has fibromyalgia.
These cytokines have a bearing on how the immune system performs.

mcem Sun 01-Dec-19 09:37:34

As I read through your daughter's problems I was thinking fibro.
My DD is a sufferer. Add in kidney problems (awaiting an op to insert stents) plus gastroparesis, resulting in ileostomy.
She has a hellish time and is pinning her hopes on two scheduled op's which should give some relief.

Recently, she's experienced her leg suddenly giving way and has had several falls - 2 involving stairs. She too is losing hair and has skin problems. Hardly surprising that she is severely depressed.
I have no idea if she'll be better or worse next year.

I can absolutely sympathise with you madmeg as a mother try to offer support.
Her partner couldn't cope with the illness and they split up so now she also faces all the difficulties of being a single mum.
There are days when I have to admit that she needs more than I can offer - practically, financially and emotionally.
I shall follow this thread with interest and hope that both you and your DD find a way forward.