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to ask you to help me get a diagnosis? Please?!

(47 Posts)
saturnvista Tue 16-Dec-14 12:09:04

My GP has drawn a blank and I'm desperate. Can anyone give me a lead? My symptoms have been present for well over a year and occur in cycles. They are intense fatigue, severe nausea and loose bowels. I also suffer from neck and pelvis pain (mechanical problems) migraines (interfering with sleep) and have received treatment for endometriosis in the past. There also tends to be mild vaginal thrush and tenderness on the gums at the start of a cycle. No fever. The cycles have now become more frequent, last longer, and the symptoms are now more severe. I've had every blood test my GP can think of but nothing showed up beyond a slightly raised antibody level and slight vitamin D deficiency. Depression is also present though it's hard to know if that's cause or effect. I've had scans/tests to rule out problems in the pancreas, liver and bowel. I've cut out dairy and most sugar. Haven't got celiac. I'd to pay to see a specialist but don't know who to see. My DD 3 year old is being cared for by a mother's help but she needs her mummy. My own mother is dying of cancer at the age of 68 and would like to leave us knowing we're all in good health. I don't know where to turn. Any suggestions gratefully received. Sorry about the lack of paragraphs, don't know how to do them on the phone.

DandyHighwayman Tue 16-Dec-14 12:13:24

I would totally be double checking thyroid levels with GP

plecofjustice Tue 16-Dec-14 12:14:48

Have you tried keeping diaries of the symptoms? It is pretty invasive, but basically writing down your diet, mood, activities, sleep, menstruation - anything significant and note any symptoms. You are in effect logging your life to look for patterns which trigger your illness cycles. Often, people can find causal links once the information is in front of them, that is lost when trying to look back while feeling ill or recovering.

Something like this
www.aboutibs.org/site/signs-symptoms/symptom-diary

or

https://www.blueshieldca.com/bsc/hw/images/healthwise/media/pdf/hw/form_tm6566.pdf

Try this for 6-8 weeks and see if there are any patterns. You can then go back to your GP with more information and work through it.

plecofjustice Tue 16-Dec-14 12:14:53

Have you tried keeping diaries of the symptoms? It is pretty invasive, but basically writing down your diet, mood, activities, sleep, menstruation - anything significant and note any symptoms. You are in effect logging your life to look for patterns which trigger your illness cycles. Often, people can find causal links once the information is in front of them, that is lost when trying to look back while feeling ill or recovering.

Something like this
www.aboutibs.org/site/signs-symptoms/symptom-diary

or

https://www.blueshieldca.com/bsc/hw/images/healthwise/media/pdf/hw/form_tm6566.pdf

Try this for 6-8 weeks and see if there are any patterns. You can then go back to your GP with more information and work through it.

CheeseBuster Tue 16-Dec-14 12:16:25

Stress?

saturnvista Tue 16-Dec-14 12:18:08

I'll keep the diary and get thyroid levels checked again. Thanks! Any other suggestions still gratefully received!

saturnvista Tue 16-Dec-14 12:19:05

Cheese I won't deny I'm under stress but it doesn't seem to trigger the cycle as such.

Middleagedmotheroftwo Tue 16-Dec-14 12:20:24

What's the word when illness and ailments are more in your mind than actual?

I'm not dismissing your problems in any way OP, but the mind is powerful, and if you are under stress, as an example, your mind might be dealing with this by giving you aches and pains and other symptoms as a way of telling you you need to relax a little and take it easy.

BarbarianMum Tue 16-Dec-14 12:22:16

<< I've had scans/tests to rule out problems in the pancreas, liver and bowel....Haven't got celiac.>>

Have you had a colonoscopy and endoscopy that took biopsies to rule out coeliac disease /Crohns or just the blood tests?

I have gluten sensitive Crohns (plus possibly Coeliac disease) but test negative on the blood test for Coeliacs. Several of your symptoms - and particularly their cyclical nature - sound like me in the early days (was only diagnosed once I got really sick).

Anyway - I wouldn't assume negative for coeliacs/problems with gluten based on blood test alone.

saturnvista Tue 16-Dec-14 12:22:29

I think the word you're looking for could be somatic middle.

saturnvista Tue 16-Dec-14 12:25:15

Barbarian sorry to hear about your illness. I had a stool analysis and was told I didn't need an endoscopy. Then the blood test was negative. Is there another test I could request?

BeyondTheTreelights Tue 16-Dec-14 12:43:23

Ehlers danlos?

Smudgeandpudge Tue 16-Dec-14 12:50:36

I'd ask for a barium meal. Scans often don't pick up problems in the small bowel.

BarbarianMum Tue 16-Dec-14 13:26:40

To rule out coeliacs you would need an endoscopy that included a gut biopsy (this is an unpleasant but pretty straightforward procedure - you don't need a GA, though you will be offered sedation). It is invasive though, so your doctor may be reluctant.

For the Crohns, I had a colonoscopy that also tried (but failed) to look at the terminal portion of the small intestine and a capsule endoscopy - plus stool and blood tests.

Are you under a gastic consultant at the hospital, or just going through the GP? If you have significant gut symptoms I really recommend getting your GP to refer you onward - my GP ran a few tests then referred me when I wasn't getting any better.

saturnvista Tue 16-Dec-14 13:54:29

Barbarian thank you. I saw a gastroenterologist privately. There was no blood in the stool which I think was why it went no further. Would it be worthwhile to cut out gluten? I don't have painful abdominal cramping or very loose bowels (although that was part of the picture six months ago). beyond the I don't have hypermobility.

raltheraffe Tue 16-Dec-14 14:01:59

It sounds like a multi-system disease, you may want to try a rheumatologist. They deal with auto-immune disorders.

Was it anti-nuclear antibody that was raised and did you have further immunology screening?

Running concurrent with that I would say mild cyclical depression which is triggering the IBS.

saturnvista Tue 16-Dec-14 15:00:03

rather I don't know if it was anti-nuclear antibody that was raised. Are you saying the depression is triggering nausea? I can't say that I've seen that happening.

saturnvista Tue 16-Dec-14 15:31:22

bump

JontyDoggle37 Tue 16-Dec-14 15:37:58

Intensely personal question, but are you on the pill/implant? I ask because I ended up with a list of symptoms quite similar to yours, and was told by my doctor I had depression. I went to see a counsellor who said she'd seen several women like me and the cause was our systems not being able to cope with the hormone flux caused by being on the pill/implant. I had the implant removed immediately and within 3 months was 60% better and 3 months after that absolutely fine. It was totally frightening that the medical profession didn't recognise that this could be a cause.

saturnvista Tue 16-Dec-14 15:42:33

Jonty Thank you for sharing that. I'm not using any hormonal contraception at all. It would be lovely to have such a straightforward solution though!

saturnvista Tue 16-Dec-14 17:55:47

bump

raltheraffe Tue 16-Dec-14 18:25:17

No sorry I should have written it more clearly. If you have a susceptibility to IBS, the IBS will get exacerbated by anxiety/depression. The nausea is part of the IBS.

It sounds like a complex multi-system disease to me. You need to start off with more detailed immunology screening and then see a rheumatologist. It sounds like lupus to me (or a related multi-system disorder) but I have not practised as a doctor for nearly 10 years so my knowledge base is nowhere as good as a practising doctor.

HalfWayHome Tue 16-Dec-14 18:29:08

Totally left field and extremely rare: behcet's (auto-immune) disease. I hope not though.

creampie Tue 16-Dec-14 18:31:23

SLE? I would second rheumatology referral

VivaLeBeaver Tue 16-Dec-14 18:34:02

Could be some weird and rare autoimmune condition. My dad had one, can't even remember which now, and was in hospital six months as an inpatient before they even managed to work out what it was.

He had cycles of intense fatigue, weird rashes, joint pain as well as other symptoms.

They tested him for loads of stuff like grand cell something......remembered what he had now. Wegener granulomatosis. Addenbrooks hospital is the national centre of excellence if you need a specialist. Our local (large city) hospital were out their depth.

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