Desperate for a proper diagnosis

[CrepuscularDesperandum]

This is a really long shot but I'm hoping that someone medical might be online and can suggest what I can suggest to my GP. I've had no luck across the last 3 years in getting a diagnosis for an episodic illness that has just recurred for the third time, after 10 months of complete and utter health.

Here are the symptoms - all of which occurred almost overnight, 4 days ago and are now unremitting, after me feeling completely fine and healthy for almost a year:

Acute, severe, very localised left lower abdominal pain sort of behind the left hip.
Crippling pain at the top and the base of my spine that makes it almost unbearable to sit upright - the kind of pain you get at the height of real flu - but no other flu symptoms.
Pain in my arms/bones/joints, as if I need 'oiling' like a rusty machine.
Intense nausea/loss of appetite (I normally have a very, very hearty appetite)
Very, very bitter taste in mouth.
Mouth sores/ulcers (I never usually get these)
Headache all night (I'm never prone to headaches)
Shivers - on and off
General feeling of being deathly ill much worse than any real flu etc.
Rapid weight loss - 4lbs in 4 days, after not being able to shift any weight for ages when trying (not trying now and scared about current weight loss)
Some increased 'urgency' in going for a poo but no real diarrhoea

I think those are the main symptoms. This is the third time I've had exactly these symptoms in the last 3 years and each time, an 'episode' has lasted for 5 months! After about 5 months, I've gradually recovered and returned to total health, feeling strong, energetic etc. Nothing has changed in my life recently and I'm generally very happy, not particularly stressed and never had any mental illness.

The first episode happened after a really nasty bout of proper flu when I'd taken ibuprofen across about 2 weeks to manage the symptoms and I'd thought I'd fucked up my digestive system because of this. I had all the usual blood tests, colonoscopy/gastroscopy/rectal sigmoidoscopy and the only result of any note was a very raised faceal calprotectin test.

My consultant concluded it was 'just IBS'. No treatment. I gradually got better but had 5 months of a completely compromised life.

After about 15 months, I had exactly the same symptoms again but this time, the context was me feeling extra well, just started exercising/running, had expanded my diet from Low Fodmap to more normal eating for months, with no problems. Once again, I suddenly had 5 months of totally ill health, barely able to walk and work let alone exercise. Gradually got better.

This episode is in another context of total health and well-being. The only thing I'd noticed in the last few weeks was sudden inexplicable periods of fatigue but these were only brief.

I'm 55 and almost menopausal (last period was July last year). I've had a really easy menopause with barely a hot flush. Last time, my GP had suggested it was 'possibly hormones affecting digestive system'. However, I've had a normal digestive system for over 10 months and been eating a full range of foods with no problems. Overnight, I'm suddenly catastrophically ill again and have no idea why.

I now think the digestive issues may be a red herring and that there's something more 'systemic' going on - but what?

I know it's not life threatening. I'm feeling so well and healthy between episodes. Is it hormonal? I had a uterine scan last time and there was nothing of note. Blood tests indicated perimenopause but nothing to explain the symptoms I've got. Consultant is convinced my digestive system and colon are all fine - but why then the excruciating very localised, lower left abdominal pain - like a hot spear in my side?

I've not got the classic IBS symptoms.

I think the most scary symptom is the intense pain in my spine and the general feeling of being more unwell than I've ever been through a 'normal' virus. Yet it's not ME/CFS as I'm utterly well and healthy for months and months between bouts.

I'd give anything to get a diagnosis, even if there's no cure. I feel stupid going back to my GP as he did the whole range of tests twice, across the last 2 years and I normally never go to my GP at all.

Could it be that certain tests were done at the 'wrong time' when I was already getting better and so nothing came up? But if so, how then do you ever ensure tests are done at the height of this illness, as there's always a wait, whether NHS or privately?

So I'm turning to the collective wisdom of MN, especially anyone with a medical background. I'm sensible enough not to rely on anyone's 'diagnosis' of course and will return to my GP in due course but I'm absolutely certain this isn't 'just IBS'.

The qualitative difference between how I normally am and how I am when I have an 'episode' is so so pronounced that I know it's something definable and significantly adverse. But what?

I really can't face another 5 months of waiting to get better, with no treatment, no pain relief, no diagnosis. If I knew what it was and how I could prevent or control it, that would really help.

Tell the doctor your symptoms, how unwell you feel within yourself, that you feel entirely well between episodes and ask to be referred to rheumatology or immunology as suggested above. Be factual and clear.
Routine blood tests including standard autoimmune test are worth repeating (while there are some that the hospital may ask for after having seen you).
I find a 'broken record' technique works well - repeat what you have said and state clearly what you want the outcome to be. "I am worried about how unwell I feel and would like blood tests and a referral to a specialist".

Im wondering about parasitic infection, a lot of those are horrible multi symptom illnesses and then go dormant for a while. Have a look at this web page and see what you think

emedicine.medscape.com/article/999282-clinical

OP, before your GP appointment, write a list of all your symptoms then you won't forget anything.

Poly cystic ovary syndrome? The burning pain could be a cyst

Hi Cresp

                         Here is something you may not have considered. 

     Many of the above suggestions have been associated with autoimmune problems, or hormone problems etc.  I wonder if you realise that   Vitamin D , is a hormone , which affects the immune system. I wonder if your illnesses coincide with winter  and spring times.       You may or may not know that  vitamin D ,  ( whose primary source is sunlight on your skin)  - in fact,  cannot be made in UK  from  mid-Oct   to  mid  April when UVB  in sunlight is absorbed by the atmosphere. The sun's elevation is too low. 

Whilst sudden onset of Vitamin D deficiency is unusual, in your case it may be that if you are in a "low" state , then your immune system , when challenged by either a pathogen , or your own autoimmune response may cause your illness. Vitamin D is a hormone which is used by practically all of your cells to respond to stimuli , it has the effect of enabling your genes to be read , such that your cells can produce proteins, modify behaviour etc. About 2000 of your 23,000 genes have vitamin D response elements. In other words , if you are low in Vitamin D , you can expect problems arising in the normal operation of your body. A simple example would be defensins , these are receipes , in your DNA, for anti-bacterial and anti-viral proteins (i.e. inbuilt anti-biotics, anti-virals ) . Vitamin D also has anti-inflammatory properties , influencing the control of inflammatory response.

             Rather than  continue to propound the  benefits of a normal vitamin D level,   I would suggest , that IF  you check your level,  and IF  it is low ,      then  you may very well be helped by supplementing , in order to get your level into a proper range. Relying upon sunlight  after  mid-April , may well take several months, to boost your level,   particularly if you intensively use suncreams , which inhibit Vit D production.  Also,  if you are vegetarian, then  veggie foods  are very low in Vit D. 

        You can get a quick simple test from an NHS  lab   here.     <a class="break-all" href="http://www.vitamindtest.org.uk/" rel="nofollow" target="_blank">www.vitamindtest.org.uk/</a>        by sending a bloodspot sample to the lab, they analyse it, and email your result back within a week.      IF  the test is not ordered by a doctor , they do charge  £ 28 unfortunately.    By checking  and  correcting,  you may very well make a great deal of difference for yourself.  

         I have posted quite a bit here on mumsnet about vitamin D ,  search my username, for more

Here is one of the threads which may be helpful, the experiences of many people that were low in vit d, how they helped themselves etc. It is a long read , but lots of info. www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect

     best of luck,  get back to me  , if you want any more info. 

BTBH.

Very helpful everyone. Thank you. An autoimmune disease sounds very possible and I'll push for more tests. Other than the specific tests of ankylosing spondylitis, which I had done and came back clear - what other tests are relevant? Normal blood tests (the usual full array ) came back normal each time before.

Seatoski, I've also wondered about parasitic infection and that stool samples weren't effective enough to pick this up. I've had - in my lifetime - amoebic dysentry about 30 yrs ago after travelling to India - but that cleared up fine and no problems afterwards. I've also had cryptosporidium - 9 years ago - from local swimming baths - but also was completely fine after a while too.

I had a uterine scan last time and nothing of note was seen on my ovaries or in my womb.

Vitamin D depletion probably isn't the case as I'm so so well between episodes which has included the whole of this last winter and the winter of 2015 - the year it all began (in spring).

I thought things were subsiding but I was kept awake most of last night with pain, feeling sick and with headache and then had terrible diarrhoea this morning, which I didn't have really for the last 2 weeks since this episode began. My spine still hurts in a flu-like way.

Worst of all, by far - is that one of my DCs (SN) has now found out about this episode and is completely unable to cope and was in tears before school. I'd managed to hide it from them for 2 weeks as they never cope at all if I'm ill and went to pieces the first and second episode.

I've now spent all day worrying about them and they're not replying to texts. With the Easter school hols coming up, it wasn't going to be possible to hide it any more but they are completely devastated (emotionally vulnerable DC) and now I'm going to have to manage their feelings at the same time as feeling so so ill myself and continuing to have to play it all down for their sake.

I just need to know what's wrong, so I can say it's 'this' and this is what we can do about it. Instead, DC remembers each episode lasts 5 months - in the past - and they say they just can't go through this again. I've explained that virtually nothing in their lives needs to change; I just can't do so much physically. But this isn't reassuring them at all.

It's probably going to be months and months before I can get further tests and results and even then, maybe no answers and my DC need me to be very clear, precise, factual and give a sense of a predictable future - none of which I can do.

Hi OP. All my markers came back normal and I have inflammatory spondyloarthropathy with negative gene for AS.

Autoimmune antibodies are not necessarily diagnostic, and negative AB does not rule out an autoimmune condition.

As I said upthread, it is often quite painstaking and time consuming detective work to arrive at a diagnosis.

Crepescular, I think you need to be very factual with your DCs, rather than trying to protect them by pretending all is fine when it is not. Children are perceptive and often worry more when they are NOT told what it going on. Saying 'I don't know what it wrong with me' is much less scary than fixing a smile on your face and pretending all is well when it is obvious to them that it is not.

I agree with having an extensive autoimmune panel done. Have you had ANA for Lupus?

Not read the whole thread, but you mentioned you had a blood test for ankylosing spondylitis which came back clear. If you mean you were tested for the HLA-B27, you know that you can still have AS without it? Something like 5-10% of people with AS don't have it. If you think it could be an issue, especially if you have family members with AS, it might be worth pushing for x-ray/MRI.

How did you get on at the doctors?