Can anyone at all diagnose me - anyone? At wit's end!

[Whoremoan]

For 3 months I've been really really ill with the same symptoms I had - lasting 4 to 6 months - 2 years ago but then recovered. It's the same profile exactly as last time and the same tests were done and the same conditions ruled out. I'm losing all faith in the medical profession and so am turning to MN wisdom as a last chance.

Here are my symptoms: It starts - each episode - with urgent need for diarrhoea in the middle of the night and severe localised lower left sided abdominal pain like a red hot spear in my side. This isn't like cramp or spasms or wind - just a sharp, hot 'infection'-like pain.

It goes along with incredibly bad flu-like symptoms - burning intense pain (not muscular but sort of inside the spine) at the base and top of my spine that's so bad I need to lie down, as it hurts to support my back, even sitting up. No respiratory issues though.

I'm icy cold and shivery but have no really high temperature but sometimes hot sweats along with the abdominal and spinal pain waking me from deep sleep in the night.

I feel extremely nauseous for about 5 weeks, lose a stone in weight, have a very bitter taste in my mouth, white tongue, mouth sores and herpes type sores on my lips. My eyes are too dry to wear contact lenses.

After about 7 weeks, the abdominal pain is less bad and now feels like a clearer, cleaner sharp needle type pain - no longer burning hot, infected feeling. Bowels seem more normal and sometimes even don't 'go' for a few days at a time.

Pain is always worse after a poo and often relieved if I eat and haven't 'gone' for a few days.

However, the pain at the base and top of my spine remain really really bad as does the flu-like feeling of exhaustion and 'yukky' grotty, weak feeling. If I try to ignore it or push through it, all the symptoms get worse. Rest helps but don't really have the kind of life where I can easily rest.

Stomach pain is now more like a dragging, tugging feeling most of the time but no longer so unbearable and acute.

The only time in my life I've ever felt like this and for this long is 2 years ago when the same symptoms developed then and it took about 6 months for me to feel anything like normal - but after this, I was fit, healthy and well for 14 months - except for some IBS type symptom.

Can anyone at all suggest a diagnosis?

I have Crohn's and it does sound like that to me (although I clearly have no medical expertise). My symptoms when having a flare are quite similar (exhaustion, abdominal pain, upset stomach). Hope you are able to find some answers soon.

I understand what you mean with regard to your longstanding relationship with the GP, and agree when the results come back it would be good to say at that point you'd like autoimmune conditions to be explored, via referral to rheumatology.
With regard to the blood tests not seeming to reflect how unwell you obviously feel, it's a bit of a mystery. There are certain antibody markers for some conditions, but these are absent in lots of sufferers. Usual indicators of inflammation - CRP and ESR can be normal or near-normal despite active disease - I was told it was something to do with the fact that the body fights a pathogen originating externally (eg a flu virus) differently to when it fights its own tissue erroneously.
And also flares can fluctuate day to day, so if you were an inpatient a rise and fall could be detected but a one-off at a GP surgery is not going to exclude diagnoses if the results are normal.
In my area, first referrals to rheumatology take place within 4-6 because some of the conditions must be caught promptly to minimise joint damage, I am sure if you had to wait 9 months you'd need hospital care for nutritional support and pain relief. I am amazed you are coping as well as you are with the nasty symptoms you describe and hope they can get some answers and treatment for you very soon.

You will have to keep badgering your GP.The weight loss bit is cause for concern as it does indicate something is very wrong.You must stop being brave or your GP will think that you are OK in between visits,if you are so unwell that you cannot get to him then ask for a home visit.I hope you start getting some answers soon.

MichaelSheen and SeventhGo, thanks for this. I've now had blood test results back - all normal - and faecal calprotectin - 85 - which is only sightly raised and lower than it was 2 years ago when previously tested.

I spoke to a different GP on the phone - who's never met me. I mentioned a referral to rheumatology but he said I didn't really have the markers of inflammatory disease. However, he said I could have more blood tests done for autoimmune diseases - but I'm not sure which he meant, although I suggested to him did he mean HLA B27 (hope that's correct) and he seemed to agree. He also agreed that Crohns disease is difficult to diagnose but again said none of the investigations were suggesting this.

However, I got the distinct impression he didn't take me seriously. He asked about my symptoms and I reiterated all of them, including still losing weight, nausea, pain at the top and bottom of my spine that's NOT muscular but hot burning pain like when I once had meningitis, urgent need to poo waking me from deep sleep, ongoing, localised, sharp, lower left sided abdominal pain, flu-like feeling etc etc.

He said he supposed I could seek a second gastroenterology opinion and have another full colonoscopy but that he didn't like to involve so many different doctors....I understand that he probably feels like 'closing ranks' with his fellow medics and not questioning someone's opinion or results.

However, I remain really ill after over 12 weeks and no matter how much I try to push through it, am completely unable to do any of the things I enjoy, including eat with pleasure.

He told me that the pending ultrasound scan on my pelvis was unlikely to show anything as I'd had a CT scan that had covered that area and it was normal.

It all feels surreal and 'Kafkaesque' really. My test results keep coming back as normal, yet I feel more ill than at any other time in my life, except when I had the first 'episode' 2 years ago. I've spent a tenth of my annual income so far on private tests and can't really spare that kind of money but would do anything to get a diagnosis and some treatment so I can have a normal life again. I especially want to get better as my DCs are suffering and that's the greatest motivation of all for me.

Yet no matter what I do, I still feel so so ill but test after test shows nothing that leads to a diagnosis. I feel like the GPs are going to start 'labelling' me as 'one of those patients' despite me having a life time of health, until recently - and virtually never having visited the GP for years a years.

Until all this, I've been healthy for years. I've never suffered from any kind of anxiety or depression - and still don't. I don't exaggerate my symptoms and I usually stay away from medics, as I've never felt I needed their input and can happily look after myself. Really the only 2 factors I can possibly think of that may have caused this undiagnosed illness are either genetics kicking in at middle-age, (family history of ankylosing spondilitis) or perimenopause. However, I've been breezing through perimenopause, with the only symptoms being less regular periods - maybe every 3 months now - no hot flushes, no problems of any kind. But as the first 'episode' of my illness started 2 years ago, that does coincide with hitting the perimenopause era.

So I'm open to considering there's a connection. Yet, the symptoms I've had are focused on my digestive system and spinal pain/flu-like symptoms, rather than anything usually associated with gynaecological ones.

What do I do now? I'll go for the auto-immune blood tests but if markers are episodic, then they're less likely to find anything than when I was even more ill a few weeks ago, with high temperature etc. I'll have the ultrasound scan. But what if nothing is then found?

Oh I am beyond frustrated for you.
In my opinion your GP is out of his depth and is failing you.

So I'd say you're at the point where either you write to the Practice Manager and state that unfortunately you've been left with no other option than to insist on an immediate referral to rheumatology as your GP is not investigating your extremely serious cluster of symptoms to your satisfaction. State that your overall condition is declining rapidly (quote pain levels, weight loss, effect on daily life etc). You would not be unreasonable to insist on a prompt response, eg within 7 working days. Be businesslike and assertive - in my experience it helps to state that you respect what your GP has tried to do for you to date, but that you're now significantly dissatisfied and feel left with no choice but to insist on a course of action which within the limits of your knowledge is distinctly appropriate.

Or, see different GP, even change practice?

Or, when things are acute, you could present at A&E. Obviously very much 'last resort' but actually, the most common reason for attending A&E is severe pain, and coupled with the weight loss etc it may be the fastest way of getting a better assessment and appropriate referrals. GP failures to diagnose/refer are fairly frequent reasons why people end up in A&E. As an ex acute care nurse I certainly wouldn't blame you for going there out of desperation.

It might be helpful to quote from this www.arthritisresearchuk.org/arthritis-information/conditions/ankylosing-spondylitis/diagnosis.aspx

which states that 60-70% people with ankylosing spondylitis don't have raised inflammatory markers, and in the early stages will have normal x rays

Given your family history and symptoms it is obviously prudent to be seen by a specialist to hopefully rule it out.

and this which details symptoms (which sounds very much like you)
www.arthritisresearchuk.org/arthritis-information/conditions/ankylosing-spondylitis/symptoms.aspx

For what it's worth I have Addison's disease and the two stand out symptoms from before diagnosis were extreme tiredness and salt craving. I did have diahorrea but it never woke me in the middle of the night and my blood pressure was extremely low to the point of almost passing out when I stood up

I have major issues with salt cravings and excessive thirst too.... all linked to crohns.

Another one saying autoimmune. It really does sound like it. My mum has lupus and antiphospholipid syndrome and experiences I think all of the symptoms you do. The sores around the mouth really jumped out at me because she suffers with that a lot when she's having a flare. It took over ten years from onset of symptoms for her inflammation markers to start going up. That's when she finally got diagnosed. I hope you get this figured out soon op

When you say you have pain at the top of your spine.... do you mean neck pain? As those pains happen at night, could stomach/digestive related? Is the neck and bottom spine pain there all the time? Does it go away after you eat breakfast?
The lower left hand pain at night would indicate stomach issues. As does you not being able to enjoy food. Did any doctor make a suggestion about trying some stomach acid inhibitors to see if that would help.
What is your BMI currently? How much weight loss are we talking about?

Hi, see another GP. I was referred by my GP without markers in my blood. After the second referral and 9 years of suffering, the rheumatologist found antibodies in my blood.

You could also do with a biopsy. Like I said up thread, blood tests don't always show what's going on.

Thanks again MichaelSheen. FallenSky, if inflammatory markers may not show up on tests - even for years, how on earth will I ever get diagnosed or even treated?

Seaweed, the neck pain and pain in my lower spine is like a hot soreness inside the spinal lining, NOT like a muscular pain - and is there all the time, including in the night. The pain gets worse across the course of a day just like when you have really bad flu and you feel worse and worse as the day goes on and you get more and more tired. it doesn't seem to get better - or worse - after breakfast.

No doctor, even at the first episode 2 years ago - has given me anything at all for treatment - no anti-acid tablets - nothing. At times (though not in recent weeks), the feeling of burning acid in my upper guts has been really unbearable but I've not been told to take anything for this.

In recent weeks, when the lower left sided abdominal pain was so bad I was nearly fainting with pain, my GP said try paracetamol, which I then did. I'd avoided this as well as ibuprofen, since 2 years ago when I thought ibuprofen had messed up my stomach and caused all the problems. However, paracetamol didn't touch the pain.

My GP thought at this point that all the symptoms were like diverticulitis. So did I. But then as nothing showed up on the CT scan or flexible sigmoidoscopy, they ruled this out. Everything I read sounded like diverticulitis however.

Seaweed, I was overweight to start with - 5 ft 7 ins and 12 st 6lbs. I'm now about 11st 6lbs - so have just just under a stone but would rather be fat and fit/healthy than have my clothes hanging off me and feeling so ill. However. I'm obviously not underweight yet.

Cheesecadet, what blood markers did your rheumatologist find that a GP's blood tests don't show? The next set of blood tests is supposed to be for autoimmune markers but will that be the right kind of testing from the GP?

Two years ago, I had a biopsy during a colonoscopy and nothing was found. This time, I just had the flexible sigmoidoscopy and no biopsies were taken, although from someone upthread here, I understand that for things like microscopic colitis, several biopsies from different areas should be taken.

How is it that a supposedly clever, esteemed, expert gastroenterologist isn't thinking of and checking for things that many of you helpful MNetters are suggesting? Why is he so convinced it's 'just IBS'? Is it because I'm a middle aged female?

You sound as if you are going through hell . My friend's husband has just been diagnosed with Crohn's. It took 3 years and numerous scans, scopes, bloods etc. Apparently it can be very difficult to diagnose. I hope you get some answers soon.

Poor you

It's not getting picked up because 99% of patients that they see presenting in a similar way to you do just have IBS or whatever else.

Is there any chance that when you are dealing with medical people you don't get all this across quite as urgent as you are here? This happens to me a lot and I end up feeling like I didn't sell my case walk away not feeling listened to. It's never mattered very much because the issues weren't this serious.

But this is clearly impacting on your quality of life in a huge way - I'd be tempted to change GP surgery and see someone new. Book a double appointment and then start from the beginning. Have a written list of symptoms and how long it has been as issue for. Show them. Really hammer home how distressing this is for you. Include the family history and frustrating non-diagnosis history.

You are obviously a very stoic 'coper', and the problem with this is that combined with unexciting test results you just won't come across as somebody who is very unwell - you end up appearing more like a hypochondriac, which you clearly aren't.

As an aside uou really could take gaviscon for the upper GI acidic feeling though couldn't you?

I have Rheumatoid Arthritis and Pernicious Anaemia. My RA was basically diagnosed on symptoms alone as my CRP levels on my blood test weren't hugely raised.

I also have IBS which incidentally after just over a year on my RA medication has virtually cleared up.

Until I was diagnosed I felt terrible. I would be fine for a few weeks/months then it would suddenly be like a switch was flicked and I could hardly function. My pain was in my fingers and ankles. It was like I had toothache constantly in them. I was so exhausted I could hardly get out of my bed. My gut feeling is that it could be some kind of auto immune disease along side IBS which is why non of the gastro investigations show anything x

I'll have to double check with mum when I next speak to her but I believe she got the diagnosis of antiphospholipid syndrome first due to multiple blood clots. They test for an antibody. The other symptoms she was having weren't necessarily indicative of aps but they didn't think of another autoimmune because of her inflammatory markers being OK. So they went down the route of testing for everything else you can think of. It was only when she suddenly had slightly raised markers that her Gp clicked and put 2+2 together. When you have one autoimmune condition you are much more likely to have another. I think you need to keep mentioning autoimmune to the Dr. Question them, suggest things to them. Keep pushing for that rheumatology referral.

I tested positive for lupus anticoagulant. But then my next one 12 weeks later was negative. Antibodies fluctuate, therefore don't always show. I'm not sure if this was done by the GP.

I suggest repeat tests of the ones you've already had done and yes autoimmune ones, as it does sound likely.

BertsBlanket, I find it difficult to convey how difficult things are to the GP because I tend to be calm, rational and factual at appointments. If I've at all 'pushed' a bit further, my past experience is that, given they're still not finding objective physical measures of illness, they begin to think you 'protest too much' and become sceptical.

I've been asked 3 times now, "Has anything difficult been going on in your life recently when this began?" Each time, I've reiterated that this episode occurred when I was feeling particularly happy, well and energetic. I'd just taken up running/jogging (and invested in sports kit etc), had slightly expanded my amount of vegetable intake as my digestive system had been better for a while and was full of plans and pleasureable schemes. I was effectively the opposite to stressed or unhappy. Nothing bad had happened. But this doesn't seem to be the answer the medics are looking for.

If I express more emotion at an appointment, I'm afraid that the GP will then go "Told you so. You ARE stressed!" when of course, I'm more stressed now, after 13 + weeks of pain and illness but other than illness and the effect this is having on my life, everything else is good in my life and I'd be pretty much ecstatic if I could only return to full health.

I do tend to attend GP appointments in my work clothes (business suit), partly as I have appointments after work and partly because I like to dress 'on a par' with the medics, so they're less likely to see me as just 'the patient'. However, maybe I come across as too 'OK' and not really suffering.

I'm having more blood tests later today but there are no further GP appointments and I'm not sure whether to wait until after the next blood test results and also the ultrasound scan - not until 8th March anyway - before arranging another GP appointment. I expect he'll say don't come back till we have more results.

Meanwhile, the flu-like symptoms diminished first thing in the morning, a bit in the last couple of days but I've again got diarrhoea, despite eating only bland white foods for over 3 months now - just rice, chicken, cod, eggs etc. No gluten. No lactose. Virtually no veg. Virtually no fibre - yet still my guts are acting as if I'm eating irritating foods.

The pain at the top and bottom of my spine continues - similar to when you're in the throes of really bad flu - but it's been 13 weeks now. It's worse as the day goes on, as if my body is demanding rest.

My tongue is thickly coated in white and I still feel nauseous - but slightly less than before.

Does anyone know if autoimmune blood markers will diminish if an 'episode' diminishes too or do those remain at a constant level? I've never yet had tests at the height of an episode. It takes so so long to arrange these even if I pay privately, that the worst part of the episode is usually over.

I do believe it's more likely to show something when you're in the middle of a flare but I've also heard otherwise. See what others say about.

Mine was caught when I was feeling really rough.

Ask your GP if she'll write out extra blood forms to use when you're flaring, that way you're not waiting for an appointment also.

Sorry if I have got the wrong end of the stick but why do your bloods take so long? When I have mine done... inflammatory markers etc it's a quick process so they can wack my steroids up :( they always test 'in the throes of'.

Whoremoan Any further forward with this? It does sound like an auto-immune response.

Just re-read your thread and I could have written quite a lot of your posts. I've been diagnosed with ME/CFS and the first 18 months was a bit like your journey. My head, neck and spine were sore and I had constant flu symptoms, especially when I overdid it. I think the IBS? type symptoms kicked in about a year in, but could have been much before. I was so sick, I'm hazy with the details.

Not saying that this is what you have and 25% of us are apparently mis-diagnosed with it anyway. But, my years of research tell me that the early days are often spent focusing on the worst individual symptoms and ending up in that relevant specialist department. Who often, cannot see any reason for why you have all these symptoms. People with ME/CFS end up going round all the departments.....

Just a thought. Best wishes to you