mistry pain!! any thoughts?

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hi guys!

it started bizarrely, i had throat pain but not where you tonsils are mainly in the larynx area.

also having nerve- Electric shock type little pains in between my shoulder blade's and mid back which would come and go.

after six months of this I then suffered really horrendous at abdominal pain. which lasted a month non-stop it was worse at night when I was laying down and it was a really strong dull ache that would radiate right through to my back. also felt like i was being squeezed in a vice just above belly button area. one day it gradually started to fade out and I've not had it since like that maybe the odd twinge here in there.

but I do have a constant pain around my shoulder blades and when I take a deep breath it feels like my shoulders are being ripped out. i've had nausea and I was sick once and it had traces of blood in it, only tiny amounts though. I was told this could've been a burst blood vessel but I don't think it was because I'm 35 and I've never had blood in my sick before and normally I am a real recher when I'm sick.

i've had chest pain here and there as well now my pain is right-sided under my ribs that sometimes makes my right shoulder ache as well. and when I wake up in the morning is my left side feels like it's all cramped up bruised internally it's horrendous but the more I move throughout the day it gradually wears off. i now have flashes of pain in my elbows and knees, it feels like nerve pains, im asuming its reffered pain, i also used to get flashes of ear pain but not so much now as i used to get it.

i was convinced i had pancreatic tumor, and although i had normal mri and ct i wasnt convinced by them as iv read they can be missed, i told my specialist i wont be convinced untill i have a eus (endoscopic ultrasound) as this rarely misses anything.

so i had that done on Saturday and again was clear, so im now happy to leave the tumor theory... but i do think it may be cronic pancreastitis, as i have read this doesnt always show on scans. most of my symptoms left-sided and right-sided are my main symptoms plus the electric shock type pains in between my shoulder blades and what feels like on my spine. but the not so classic symptoms like the laryngeal pain The flashes of pain I get on my knees and elbows, really are confusing me!

i've been going to the GPs for the first six months when this started for them to treat me for depression telling me it was all in my head I was imagining the pain making the pain worse. eventually I collapsed with the pain I was taken to hospital where I had a CT scan and that was normal. i've also had an MRI scan ultrasound. Fecal test, A blood test for autoimmune pancreatitis. A blood test for tumour markers. all came back normal. (I had to pay for all of these things as the GPs were not interested)

The specialist I am seeing now did go over my scans again and said my pancreas does look on the plump side but has told me because all my blood testsare negative for pancreatitis it can also be plump if there is a lot of healthy tissue. I just don't buy that when I've got this many symptoms and in this much pain.

I also have two children and it does terrify me.

i've lost friends and family over this as everybody thinks I'm going crazy and should see a psychiatrist. but I know there is something wrong your body does not give of symptoms for no reason.

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  • Posted

    Hi babalishous,

    Firstly your not crazy. Everything you have written sounds like it could have been written by me.

    I've had all the tests too and also paid privatley for some of them.

    Have a look at some of my previous posts and you will see what I mean.

    I found my Dr so unhelpful that I've moved to a new one.

    My symptoms are:

    Right sided pain under my ribs that radiates into my shoulder.

    Left sided pain under my ribs that radiates along my ribs at the back.

    (I did have a burning, twinging, itching pain inbetween my shoulder blades but a chiropractor visit seems to have sorted these)

    Loose stools - sometimes undigested food, no oil, smells chemically, normal colour.

    Intigestion, heartburn, flactulance.

    Lower abdominal pains around my belly button.

    I am unable to gain weight very well but can lose it very quickly. I can lose 3-4 lbs after a visit to the toilet!!

    I have bad bone pain due to vitamin d deficiency and fibromilga.

    I have had 2 MRI scan, 1 MRCP, 2 ultrasounds, (going to have colonoscopy and endoscopy soon). Lots of blood tests including Tumor markers, liver function, full blood count, amylase, lipase etc

    All test are Normal!

    Saw the gastro 2 weeks ago he said definitely IBS. And nothing wrong with my pancreas. He agreed to the scopes. But will not be testing for anything else.

    If your like me and done your reading you know that IBS can be used to mid diagnose a lot of things. So at the moment im prepared to accept the diagnosis but am waiting for my scopes to see inside.

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    • Posted

      hiya, is your pain constant or intermitant? does it last ling when pain comes? my pain around my shoulders is constant but goes up and down with serverity. my pains under my ribs both sides are intermitant. my liver fuction test has been a little high twice but went back to normal both times.

      what i dont get is the throat pain iv had for a year constant with it, and the fladhes of ear pain i get at times. did u already have the bone pain and fiomyalgia or did it start when your other symptoms started? have u had vit d blood test? x

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    • Posted

      It has days were its intermitent and days were its constant. When the pain comes it can last 20mins to a few hours to all day. I rarely suffer with my left sided psin at night however my right sided pain has woken me up from sleep.

      I am suffering with chronic outer ear pain, Dr diagnosed it as an outer ear infection. My throat plays up now and again. Have you had your thyroid tested? Diabetes? Have you had your vitamin d checked?

      My vitamin d was checked it was 25. I had raised ALP and was unable to get my calcium levels up. Which pointed to the deficiency. It was just another thing to add to the list.

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    • Posted

      wow we could be twins!

      my ear pain lasts seconds its flashes of pain, that come and go are used to get it almost every day for five times today but I haven't had it for months maybe the odd twinge here and there. my vitamin d was checked and it was borderline foc said tgat wiuldnt cause joint pain, what number is it meant to be? when you say bone pain do you get it in your elbows and knees like in joint areas or do you get it in other places to? this has taken over my life for the past year I am close to spending £4000 for private investigations as my GP refused to even send me for a scan, I have had CT MRI and I've even had a laparoscopy op, as I was convinced I had pancreatic cancer, I really did think that I had it and I was going to die I even wrote a letter to my kids, I think it's disgusting that are so completely alone with this I don't have any help from my GP what so ever.

      finally the private specalist has proved to me that I don't have a tumor with the EUS as this rarely misses tumours. but I still believe that this is something to do with my pancreas as the pain I had was horrendous and I described classic pancreas pain, i'm not ruling out chronic pancreatitis because if you don't have the dilated ducts or the califacations then it's hard to see with the scan. and I have read that chronic pancreatitis can give pain on your right side to. when are you having your scope is it the EUS you are having?

      it's the EUS you want don't just go for a bog standard and endoscopy you want the ultrasound kind x

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    • Posted

      excuse all the spelling mistakes I type so quick I don't realise the mistakes I've made x
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    • Posted

      I'm just having a normal endoscopy and colonoscopy. The gastro kept laughing when I mentioned my pancreas. He said all my tests were normal and something somewhere would be showing if there was something wrong.. Even my faecal elastase. Which would of shown if I had malabsorbtion. I still am worried I have chronic pancreatitis but I can't afford anymore private tests so I'm at the mercy of the drs. I was petrified of having pancreatic cancer. But my scans were clear. I know they can miss tumors but I hope the MRCP would of shown it up.

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    • Posted

      About vitamin d levels im not sure. I know that anything user 25 is classed as deficient 30-40 is insufficenct and above that is normal I think.
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    • Posted

      yes iv been told by my docs it would have shown somthing, but i wasnt convinced untill i had the eus... the normal endoscopy will only see your oesophagus and stomach, the eus can see all the surrounding structures in great detail like the pancreas, galbladder, liver, kidneys... ect. maybe u should ask for that.

      i was also laughed at by the foc when i said i was convinced i had pancreatic cancer.

      but the stories you read are scary! x

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