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

(73 Posts)
Whoremoan Mon 13-Feb-17 12:21:19

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?

endofthelinefinally Mon 13-Feb-17 12:28:29

Systemic herpes?

Whoremoan Mon 13-Feb-17 12:30:37

I should add that I've had blood tests, abdominal CT scan, gastroscopy, colonoscopy and a flexible sigmoidoscopy all done and came back as normal. So the gastroenterologist has discharged me and I'm still no further forwards and still pretty ill.

Two years they also did a faecal calprotectin test and it showed signs of inflammation but the consultant said it didn't worry him. He can't find any other markers of inflammation.

At first, this time, he and the GP thought it might be diverticulitis and a medical friend suggested Crohn's disease. However, there's no evidence of this structurally or in my blood tests apparently. It 'felt' like what I'd read about diverticulitis but I have to accept it's not that.

It 'feels' like a recurrent inflammatory condition but it can't be.

The consultant suggested an ultrasound on my ovaries but has since decided it's unnecessary as the CT scan was normal.

I'm not sure if it really is related to my digestive system or something else as the lower and upper burning sensation in my spine and the generic flu-like malaise don't seem to fit this and might be something else.

Otherwise, before this 'episode', I'd been feeling particularly fit, well, happy, relaxed and had recently taken up jogging/running. There was no stress in my life and earlier in the year, when I had had some stress at work, I was physically totally fit and well at the time.

I need a proper diagnosis and I need to know how to get better. I'm going back to the GP next week but as medicine seems to rule things out rather than look at the whole generic system and try to diagnose, I'm losing faith. Can anyone suggest what's wrong with me?

Whoremoan Mon 13-Feb-17 12:33:33

Endofthelinefinally, please tell me why you suggested this? I'm interested to know more. Can it affect the digestive system and also give you flu-lile feelings and pain in the upper and lower spine?

RubySparks Mon 13-Feb-17 12:36:00

Addison's disease?

Whoremoan Mon 13-Feb-17 12:43:47

Ruby, would an issue with my adrenal glands have shown up on the CT scan?

endofthelinefinally Mon 13-Feb-17 12:51:47

Just a wild guess tbh. But you mentioned flu like symptoms and herpes sores. Plus you had identical symptoms before. Shingles is caused by the same virus and can be similar.
I am about to google.
I think you can get sores internally that can behave like diverticulitis but I am not an expert at all.

KieraCameron Mon 13-Feb-17 13:05:35

Did they take biopsies at the colonoscopy for microscopic colitis?

Also have you had a SehCat scan for bile salt malabsorption?

I have this and have very similar symptoms, including the urgency from sleep to have a diarrhoea, the burning, dragging continuous lower abdo pains, etc, the shivers and shakes during an episode.

RubySparks Mon 13-Feb-17 14:27:09

Not sure about anything showing on CT scan, I think tests would be something like saliva cortisol tests, blood tests and testing response to injecting ACTH (short synacthen test). As it is autoimmune do you have any family members with other autoimmune diseases?

Whoremoan Mon 13-Feb-17 14:47:38

Kiera, 2 year ago, they took biopisies from the colonoscopy but said all was normal. No biopsies were taken this time - where I just had another CT scan and a flexible sigmoidoscopy. I havne't had a SehCat scan however and no one's mentioned this.

Did you mean you have microscopic colitis or bile salt malabsorption?

Kiera, can your condition be treated/cured and does a flar-up/episode last up to 6 months or more at a time?

Ruby, my late father had ankylosing spondilitis and i think my late mum also or at least she had cervical spondylosis, as does my younger DB. Also there are lots of family members who had rheumatoid arthritis. Are these diseases autoimmune type ones? I don't know enough about them.

BusterGonad Mon 13-Feb-17 15:24:55

Crohn's can be a bugger to diagnose, catch it at the wrong time and your blood won't show inflammation ditto to the colonoscopy. Crohn's can affect anything from you mouth to your ahem...bottom hole! Have a look on the Crohn's forum (type into Google not MN) and see if anything sounds like what you have!

RubySparks Mon 13-Feb-17 15:27:21

Rheumatoid arthritis is autoimmune, any diabetes (type 1) or coeliac? They often go with addisons though it is more rare. have you been referred to gastroenterologist? I think there may be other intestinal things that could be investigated.

BusterGonad Mon 13-Feb-17 15:32:55

Rheumatoid arthritis can also come with Crohn's.

RubySparks Mon 13-Feb-17 15:33:24

Sorry just reread second post and see gastroenterologist discharged you!

KieraCameron Mon 13-Feb-17 15:38:46

It is bile salt malabsorption that I have, although most of my pain is right lower abdo. I also have IBS. Dr thought Crohns at first. I tend to have periods when I am doing ok but then have weeks when it really flares up. There is a medication that can help but it can also bind to vitamins and medication so I cannot take as it stops my other medications from being absorbed.

When I first started reading your post, the very first thing that I thought of was diverticular disease and then Crohns or Ulcerative Colitis,

I think it sounds like something autoimmune, especially with the mouth sores and fatigue but I am not a Dr, I think you will need to push to try and get a second opinion

KieraCameron Mon 13-Feb-17 15:41:22

sorry if you've already said, but they have checked for coeliac havent they?

lalakahle Mon 13-Feb-17 15:47:12

Has anklylosing spondylitis been excluded, OP? You have a lot of symptoms which tie up, and it can also co-exist with other auto-immune pathology such as Crohns. And you have a strong family history - it is genetically transmitted. It can manifest slightly differently in females. Please push for a rheumatology referral, if you haven't already. Best of luck x

clairethewitch70 Mon 13-Feb-17 15:52:10

My DM had similar symptoms with a bowel abcess. It was missed on several scans initially, then a different doctor spotted it.

Whoremoan Mon 13-Feb-17 16:13:04

Thanks everyone. Buster, I keep wondering if by the time they do the investigations each time I've been ill, things have died down so that inflammation fails to show up. But the consultant gastro is adamant that there is nothing structurally wrong, as he couldn't see anything.

I really wanted to see him at least one more time to discuss where we go from here but he wrote in a discharge note that symptoms were settling and no further investigations needed. That was a lie, as the only thing that had begun to settle was the diarrhoea and when I asked him about the spinal pain and the flu-like feeling, he wasn't at all interested and left the cubicle (where I was post investigations and where he did his last chat with me). I was still reeling from sedation free flexible sigmoidoscopy!

During the procedure, he'd blown air into my colon which felt fairly painful (I was still able to talk with him and watch it all on screen) and asked if this pain was the same as what I'd been experiencing. I told him it was nothing like this, as the pain I was having was sharp, burning, localised and acute, rather than the generic bloating discomfort of the air he blew into me. I think he didn't want to hear my answer and really wanted to put it down to bloating or wind!

Ruby, there's no diabetes in the family or coeliac's and I was tested for coeliac's 2 yrs ago and not found to have a problem, although I've virtually cut out all bread and all pasta since then and so have virtually no gluten now anyway.

Thanks Kiera. I do want a second opinion but not sure if the GP will let me be referred to anyone else and this time I paid to see the consultant privately and I've run out of money to see anyone else privately. So the NHS wait time could be several months at least and the original consultant is supposed to be one of the best locally.

Lala, I've not seen a rheumatologist and no one has considered ankylosing spondylitis. I did mention this 2 years ago and the family history to the consultant but when he found no signs of inflammation except the high faecal calprotectin level - he ruled this out and consigned me to the IBS pile. However, I know tons of people with IBS and they have nothing like what I have.

I'm one of those people who is able to put up with considerable amounts of pain or illness and just get on with it. I went through 12 hours labour without any pain killers or gas and air when I gave birth. I had a colonoscopy, gastroscopy and flexible sigmoidoscopy without sedation or pain killer and drove home afterwards and was able to put up with the pain and talk throughout to the consultant.

I'm usually very strong and very fit and well.

That's why I know something is really badly wrong as I can't push through this one and for about 5 or 6 weeks, at it's worst, the localised pain was so so bad I was only getting 3 hours sleep and waking with agonising pain.

I've always been till now healthy, happy, eaten a wholefood vegetarian diet until I was told to go on low fibre and to eat fish and meat again. So I followed that diet for the last 2 years and increased my physical exercise. I can't understand why I can go from being and feeling so well and healthy to needing to lie down on my office floor on and off throughout my working days and barely move at all when I'm not working.

BusterGonad Mon 13-Feb-17 16:30:16

Op my Crohn's hurts like a cutting pain on my left side kind of at the top of my leg just below my belly and when I'm having a flare it's like a gnawing pain behind my belly button. I know that if I was to eat a big bowl of salad for lunch I'll be suffering from about 3pm until the next morning when the salad has finally come out the other end!
If you had a high reading on the faecal calprotectin test then the doesn't indicate IBS it indicates the complete opposite. That's how I was referred for a colonoscopy which showed Crohn's and then a MRI which confirmed it. I've had symptoms for years. Erythema nodosum, swollen eyes, sores in the corner of my mouth, waking up in the night with terrible stomach pains, cramps after eating salad-a key one for me, sore knees and elbow joints, a hot poker pain up my bottom, gall bladder pain. It's a joyous disease. Full of lovely surprises. I don't get diarrhea but I get blocked up completely most of the time. My blood tests showed inflammation 6/10 times so not all ways!

BusterGonad Mon 13-Feb-17 16:47:36

Oh and I've had mouth ulcers on and off when I'm run down and I had the most hideous dry lips too. The December before it hit me like a ton of bricks I was so tired I felt like work was torturous!

endofthelinefinally Mon 13-Feb-17 16:55:45

OP - I hate to say this as someone who is a supporter of the NHS and very grateful for the care I have had up till now, BUT, I have an autoimmune condition and have periods of being very unwell.
I went through three months of terrible pain with something that turned out not to be related to my condition, and after getting nowhere with my GP and the hopeless choose and book system, I went privately and was diagnosed and treated within 48 hours.
It cost me upwards of £500 but it was worth it because I was absolutely on the edge of a breakdown.
It is miserable being ill and not being taken seriously.

BusterGonad Mon 13-Feb-17 17:02:20

I've suffered with the 'flares' on and off and then I had 2 big flares in about 2 years, this was the red light warning for me, then another exactly one month later, so I kept on at the doctor, going every week or so. The doctor at first thought I had a grumbling appendix, from my first appointment when it hit the crescendo so to be speak I was diagnosed on paper about 6 months later so I can't really knock my doctors but I also persevered and just knew I had Crohn's by other people's story's on www.cronhsforum.com.

redannie118 Mon 13-Feb-17 17:02:33

Your symptoms are so diverse you could have a auto immune cluster. Most people with auto immune disease have more than one sometimes as many as 4-5 separate diseases. Your mouth sores and dry eyes , temperature fluctuations and joint pains sound like classic auto immune disease and lots of them do effect your digestive tract. It may be worth your while to ask to be referred to a Rheumatologist,they will look at you in a totally different way and can do very specialist blood tests. You usually find its a domino effect, if they can diagnose one all the others will slip into place

BusterGonad Mon 13-Feb-17 17:03:33

Sorry www.crohnsforum.com

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