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

[saturnvista]

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.

I trained at Addenbrooke's and I remember all the patients with Wegener's, there were lots of them, think it must be a tertiary referral centre for it.

There are lots of these multi-system diseases and many of them like lupus get flare ups then remissions. I cannot remember the names of half of them, but a rheumatologist would be expert in this area.

The celiac test isn't fool proof. You can fail it and still be intolerant of gluten.

Can you try being gluten free for a fortnight?

I don't know..but I have exactly the same symptoms!

I thought of fibromyalgia firstly.

There are different types of ehlers danlos, hyper mobility is just one type.

Do you know what previous thyroid results were?
Though i dont think that would be cyclical.
Are you on any meds now?
Multi-vitamin in case deficient in anything else.
Not vegetarian or smoker etc
Do you drink coffee/tea/ eat lots chocolate as i find that gives ibs like symptoms.

How are the cycles of illness linked to your menstrual cycle? I have had very similar symptoms for the past year (also endometriosis) and it is because I have an ovarian (possibly dermoid) cyst. Were you scanned for that too? Some months are worse than others, I'm assuming that is due to hormone levels etc.

Have you been in the Tropics op? Many weird and wonderful parasitic infestations of bowel and tissue have cyclical symptoms.

I would get yourself referred on to an endocrinologist, a gastroenterologist and an immunologist - they'll be able to test for far more than your GP.
I find that GPs are pretty much just there for common ailments - they do a fantastic job under trying circumstances but they don't have specialist knowledge.

Personally I wouldn't be asking unqualified people on the internet who don't have access to your medical records to diagnose you either (sorry).

Hope you find out and get treatment soon.

Cyclical vomiting syndrome? (Rare)

If related to your menstrual cycle, endometriosis causing your abdominal symptoms, or menstrual dysphoric disorder?

IBS?

If several seemingly unrelated symptoms, it could be somatisation, or several different problems, or something rare and most likely rheumatological/ endocrine.

I would have a frank discussion with your GP about whether there are any objective physical signs of disease or abnormal results that can guide things from here, with so many symptoms it is hard to know where to proceed.

Also keep a diary and identity if anything triggers your symptoms, makes them better or worse.

Don't be offended if your GP suggests some psychological interventions, as lots of physical problems are made worse by stress and worry.

Thanks for all the suggestions. Haven't been to the tropics. I'm not aware of a link with menstrual cycle but then it's all becoming a bit of a blur! Hopefully the diary will help. The lack of fever/rash seems to rule a lot of things out. The suggestions are so helpful; which referral should I request first: rheumatology, immunology, endocrinogy, gastroenterology? Can't see my GP agreeing to more than one at a time! I can certainly try cutting out gluten in the meantime.

I have coeliac that only showed up with an endoscopy. I had non-typical symptoms mainly comprising extreme fatigue, aches and pains, and some psychiatric symptoms. It really is worth pushing for the endoscopy if you can. Also re 'slight' vitamin D deficiency- are you taking a supplement? And if so is it more than the RDA? If not try this as sometimes you need to take a super dose to get your levels back up rather than maintain, and vitamin d deficiency can cause loads of problems and make you feel AWFUL.

Cut down the list as much as you can yourself. Then ask your doctor!

It isnt recommended to cut out gluten if it might be relevant to diagnosing something, or if you do have an intolerance and you're likely to return to eating gluten (can cause a severe reaction.)

I wonder if it's an autoimmune thing too. I would never have got to the bottom of mine if I hadn't got desperate enough to give up on our gp and see a naturopath. She had a hunch it would be improved by eliminating things from my diet but didn't suggest it without a blood test showing an IgA reaction to certain foods. It came back saying I was fighting wheat, corn and rice (unusual) and was completely right as I now notice even a hint of rice flour makes me ill again for a few days...
Previous to this I tested negative for coeliac with a blood test by the way and so did DD but we are both highly sensitive to wheat annoyingly.

Everyone must be so different but wanted to tell you just in case as my life has totally changed and I was almost bed-ridden and struggling so hard to be the parent I wanted. So I do hope you push for answers until get there, I had given up hope by the time I saw a naturopath with great cynicism!

I second Ehlers Danlos, with Postural Orthostatic Tachycardia, Gastroparesis & Cervigogenic headache as symptoms - these can be aggravated by changes in the weathers & mire, which could explain the 6/8 week cycle

Allergies are common with the above & soy allergy is a common one which could also be responsible for a lot of your symptoms too

HTH

Thanks puffin, I wouldn't accept a psychological intervention on its own but have looked at the possibility of stress exacerbating things. Not sure what you mean by objective physical signs given that blood tests and scans aren't showing anything at the moment.

Thank you looseleaf. Rockin hippy I'll look all that up! Just begun to take a supplement sneakret. Glad you got your diagnosis.

Sorry, meant to add - autonomic nervous system dysfunction (aka Dysautonomia) could explain the slightly raised antibodies - this often goes hand in hand with POTs, which can be a symptom of EDS or a condition in its own right

I have ulcerative colitis and psoriatic arthritis (plus possible ankylosing spondylitis). NONE of these auto-immune conditions show up in blood tests (sero-negative) and my colitis was only eventually diagnosed following biopsies taken during a colonoscopy. The actual colonoscopy showed nothing. The calprotectin stool test only shows up anything (inflammatory bowel disease related) if you are currently in a flare. Also, no blood in the stools means absolutely nothing! I've NEVER had blood in my stools!

I'd be asking for a colonoscopy with biopsies. If that doesn't show anything then an MRI and/or pill camera in order to have a look in the small bowel/terminal ileum (as endoscopies and colonscopies can't get into there).

Good luck OP

Thank you rockin and stille. So many lines of inquiry to pursue here, I now feel like there's a way forward. Thanks so much to everyone for the suggestions and encouragement.

Good luck, you will get there in the end, we all do eventually