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Diagnosis nightmare, need help and advice

Posted , 8 users are following.

mandy20434
mandy20434

Hello!

I wonder if anyone could help me. I'm here because my Drs are not taking my symptoms seriously.

I've been very unwell for about six months now. My symptoms are:

Dull and biting upper abdomen pain that began in the centre and left and now affects the right side too. Also pain behind right breast bone and in right shoulder.

Dizziness / near fainting

Feeling nauseas a lot

Unquenchable thirst

Sore throat, runny nose and sore chest.

Joint pain and flu like aches

Rapid weight loss despite no change in my diet and having a good appetite (over a stone since mid Dec)

Fuzzy brain, pressure in head

Neck pain.

Loose stools

I think thats about it. I've had most of these symptoms for six months apart from the thirst and weight loss which came on the last two months.

Drs have done tons if bloods but just keep repeating the same ones (liver and kidney function, pancreas, full blood count, clotting rate, etc) - all normal apart from slightly raised white cells. Sometimes I have a bit of a temperature. Endoscopy only showed small hiatus hernia. Chest X Ray & ultrasound of liver, pancreas, spleen etc all normal.

Drs are starting to treat me like its all in my head. This, along with trying to cope with my scary, debilitating symptoms makes me very depressed which isn't helping as just convinces them even more that I'm mental :-D I'm so frustrated as think my symptoms warrent further investigations but my Drs are starting to get tired if me going up there every week. I even paid to see a specialist this week and he wasn't much help either. Said all my test results are clear so not much he can do. He is doing a fivriscan but doesn't think my liver is damaged. He said my weight loss must be my diet but I told him my diet is the same as its always been. The pain is in the area if my pancreas and liver and came on after I'd had a few cocktails at a party. I'm so seeing if my pancreas is protesting but Drs keep saying its fine because I'm not yellow and my bloods and ultrasound are normal. I know my body tho and know something is wrong but am becoming too I'll to fight with them. I can't even go out to the shop for long without feeling very weak, achey and foggy in my head.

I read that chronic pancreatitis doesn't show on blood tests and the ultrasound doesn't always see the pancreas well? Although the girl who scanned me said she had a clear view as I'm so skinny now.

I really don't know what to do next but I need to know what's wrong so I can sort it out and get better.

1 like, 17 replies

17 Replies

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  • simon3164
    simon3164 mandy20434

    Posted

    Hi mandy, bear in mind I am no qualified doctor but I believe I can offer some explanation through personal experience.  Looking at the symptoms the dizziness, unquenchable thirst the weight loss and part of others seem to indicate a pancreas problem.  Have you been tested for diabetes?  As some of your symptoms are indicative especially weight loss too.  The reason I ask this was I had my first bout of pancreatitis I was in chronic pain, and after being admitted to hospital similar tests were performed on myself, the treatment I recieved was very below par all they did was put me on painkillers and after a week without sleep I started to hallucinate and they tried to section me under the mental health act 23.

    Has your eyesight changed like more blurry than normal either close or distant, and are you urinating much more than normal?  These are other symptoms that may indicate diabetes, several weeks after my attack I noticed these and went to my GP and the result was that I had insulin dependant diabetes.  Pancreatitis seems to be one of the most misunderstood things and just because you were told everything seemed ok that may not be the case.  I have regular attacks and it is getting more frequent and more painful.  Going back to yourself these symptoms can all be related to the pancreas, and I suspect you may have diabetes, it is important that you see your GP and and have the tests for diabetes, and if you are not satisfied with what you are told or how you are being treated you have the right to get a second opinion from another doctor.  My thoughts and prayers are with you.  Please if you can keep us informed on how you are getting on.  All my best to you.

    • mandy20434
      mandy20434 simon3164

      Posted

      Simon thanks for your reply. I suspected diabetes too but had my blood sugar checked many times (via urine specimins ) and always normal. After a meal its usually around 5.7. My mum is diabetic so I also use her kit to test myself. She said they would only do bloods for diabetes if my sugar was high.

      It sounds awful but I wish it was diabetes as I could manage that compared to chronic pancreatitis.

      I did actually have severe pains at first but didn't go to Dr. After that the pain became dulled and I constantly felt full in the upper centre and some pressure . Bloating too but thought it was gastritis. Then all the fainting spells began and the rest followed. I'm now a shell of the strong spunky woman I used to be. This while experience has broken me. The worry doesn't help but its hard not to when you feel something is very wrong and you're not being taken seriously. The weight loss scares ms the most as at the rate I'm losing I will be down to a size 6 in a few weeks (I was s curvy size 12 prior to December).

      I hope you're doing OK :-)

  • janet69451
    janet69451 mandy20434

    Posted

    Mandy

    Im not a doctor but can tell you by experience I started with acute Pancreaitis in October but after three months of complaining that I wasn't feeling any better the my local doctor didn't know what to do. You see after a week my blood work was normal CT scan was normal MRI was Normal gallbladder test were normal and gastric empting was normal. But I was still having lots of pain lots of nausea and vomiting with weight loss finally almost four months and thinking I was going crazy I was sent to a pancreas specialist whom said I had chronic pancreaitis and place me on pancreatic enzymes to take for the next three months. After taking the pills for a week I am finally feeling better maybe you could suggest to your doctors to place you on enzymes to see if it will help. When I had pain my pain was the same as you. Had a hard time to get doctors to listen also so you aren't crazy just keep a squeaky wheel. Depression yes I seem to feel like I was in a dark place and couldn't get out cause I felt like no one was helping just blowing me off but even that you have to be persistent about your body and how you feel.

    • mandy20434
      mandy20434 janet69451

      Posted

      Thanks for sharing your experiences Janet. I'm glad you're feeling better!

      I am taking digestive enzymes I got at a herbal shop with every meal. Still losing weight though and feel very sick. I haven't vomitted just very nauseous.

      I've been gettingvsome neurological symptoms with it so worried I'm not absorbing essential vitamins. Im glad you got your scans. I even had to beg for an ultrasound and will have to beg for an mri too. It'd nuts.

  • janet69451
    janet69451 mandy20434

    Posted

    The enyzmes I have is prescription only so you may need them instead of over the counter also I agreed with Simon you need to be checked for diabetes I was told I will probable develop diabetes due to my pancreas isn't working well since I have chronic pancreaitis I wish you well and hope you get answers soon please keep us informed 
  • Gem1384
    Gem1384 mandy20434

    Posted

    Hi Mandy,

    Firstly I was glad to read your post. My symptoms are identical to yours! I have normal scans (MRI, ultrasound and MRCP), normal bloods.

    My symptoms are right and and left sided pain under my ribs, dizzy, feeling sick, losing weight without trying (normal appetite) chronic loose stools, very gassy, fast heart rate, slight hand tremor. Some of my symptoms are new as of last week, I passed out. Which led my dr to check for diabetes. Bone pain and aches in chest, back, knees, and wrists.

    I saw a surgeon as I has been led to believe that it was my gallbladder but he said it wasn't and its probably chronic pancreatitis! He said it fits all my symptoms and wouldn't show on scan and blood. I am waiting for the results of a stool sample for elastase. That will tell me if I have pancreatic insufficency which basically means I'll have chronic pancreatitis.

    I keep reading to see if I can find anything else it could be but so far no luck sad

    I am vitamin d deficienct, but my Dr is refusing to test any other fat soluble vitamins.

    I am taking my VIT d tablets, multi vitamin and a whole food supplement. I also drink oral replacement salts as I was worried about my electrolyte balance with my chronic loose stools.

    It gives me hope that ur specialist doesn't think you have chronic pancreatitis. Have you had any stools samples done yet?

    I have also been through a load of tests for my liver too and they thought I had gastris and/or stomach ulcer.

    Please keep us up to date on here, doesn't make me feel as alone!

    I hope its something simple and you don't have anything wrong with your pancreas x

    • mandy20434
      mandy20434 Gem1384

      Posted

      Thanks for yr reply Gem x

      I had a stool sample once but not testing for pancreas stuff. The prob is I'm having to do the GPs work for them and ask for tests when it should be them suggesting what to do.

      I'm thinking of getting a home test kit for the chronic pancreatitis stool test as pretty sure my doc won't do it. I also wish they would test me for vitamin deficiencies as in clearly not absorbing stuff very well or my weight wouldn't keep calling off. I've also started getting weird neurological symptoms like numb face and neck, muffled hearing and fuzzy head. I've read that can be vit B12 deficiency. The prob with that is it is affecting me emotionally & because I'm so drained from 6 months of illness I tend to be very enotiobsl when I see Drs which just seems to convince them I'm just mental. I really dunno how they are allowed to make such conclusions without first fully filling out the physical symptoms.

    • Gem1384
      Gem1384 mandy20434

      Posted

      My dr was very sarcastic to me and told me that I wasn't suffering from malabsorption and to stop worrying. The surgeon was a bit more sympathetic and got the tests for me straight away. I've had to wait 4 months for an MRI on the nhs so I ended up paying £675 to have one done privately. They are still refusing a chest/bone X-ray or dexa scan to check my bones (due to the pain) my referral to a gastro is end of April sad but at least by fri/Monday I should know about the malabsorption/ pancreatic insufficency and then I will hopefully start on enzymes if that is the problem.

      I have been asking my dr the whole time about testing. I had to beg for a referral to gastro. He refused to refer me but luckily after my first ultrasound scan last year I was refered then. I also have an appointment to see the pain clinic in March. Again not my dr who refered me but someone else along my long journey. I am trying to get a camera down my throat and up my bottom to check my stomach and intestines as u do have some lower abdominal pain too. (I also have ahesions, endometroisis and PID).

      I would get a CT scan or MRI scan or an MRCP. If your dr won't do that then you need a referral to a gastro. A gastro should do lots of tests to rule out anything else before they confirm in chronic pancreatitis. If it's obvious that you have it then it doesn't need as much testing.

      My dr thinks im mental too. Always saying you need counselling but he isn't the one losing 3-4lbs every week! I'm practically a skeleton. I've lost all fat on my body! I weigh 8 stone 9 lbs now. I am suffering with depression and mood swings. Can't take antidepressants as I'm breastfeeding my baby. I did try and I got high very quick and it affected me badly (my baby too)

      I do understand how you feel. It's the not knowing and waiting that's bothering me. I've had a few more tests than you so I guess I'm a little closer to getting my answers.

      Please keep me updated with how you get on xx

    • mandy20434
      mandy20434 Gem1384

      Posted

      Thanks so much Gem. While I'm sorry you're going through all of this its reassuring to hear I'm not alone xx

      Do you get itching too? I've been worried about cancer but my doc seems to think not as my ultrasound is fine and my blood clotting tests are normal.

      Its definitely pancreas related tho.

      I actually paid to see a gastro specialist thus week and he was useless. Treated me like it was all in my head and didn't seem concerned about my rapid weight loss. All he is doing is repeating the same bloods I've had before. I was certain he would at least send me for an MRI and check for vitamin defficiencies. Its all so odd. They seem to think I would have to be yellow for it to be pancreas.

      I've no idea how you are managing as a mum, I can't even manage my cat right now as feel so sick and weak all the time.

      The weight loss is very worrying, I've spent a fortune on clothes since Dec as have dropped two sizes since then and nke those clothes are getting loose.

    • Gem1384
      Gem1384 mandy20434

      Posted

      My weight loss is very similar. Clothes I bought myself for xmas no longer fit. A size 8 is getting a bit big now. I've always had curves and never had a problem putting on weight. I hate weighing myself now. I cry if I've lost a pound sad

      It's good ur having more bloods done, it's important to treat vitamin deficiences as quickly as you can. No I don't have any itching as yet, finger crossed! You don't necessarily have to be yellow for your pancreas to have a problem. You turn tellow when you get blocked ducks from the pancreas and liver. This causes a build up of billirubin in the blood which causes jaundice (I think).

      Have you researched any of your symptoms on Google (I know it's not the best thing) does anything else pop up that you could ask ur dr to test for? At my best visit im requesting my calcium, tyroid and kidneys be checked. It's been nearly a year since they were last checked and I know an tyroid problem could also be causing some of my symptoms (not sure about my left and right pains thou)

      It is reassuring that I'm not going through this alone, my husband supportive as he is, he doesn't understand how I feel every day worrying.

      I have a cat too smile and I have 3 young children! So pretty hectic house! All these problems started after the birth of my 3rd child. I don't know if it's a coincidence or not! xx

    • cathy31644
      cathy31644 Gem1384

      Posted

      Hi Gemma,

      really interested to read about your bone ,back,knee and wrist pain. I get these as well. Sometimes i get so mad as the C.P pain isnt to bad but the wrist or knee pain will be just horrid.Pain sems to be the uninvited guest.

       

    • Gem1384
      Gem1384 cathy31644

      Posted

      Hi Cathy,

      I'm glad I'm not going mad with the pains! Lol! Dr is still insistant that it's down to my vitamin D deficency. I would love to know if bone pain is related to CP. I still have not yet had my stool sample results, hopefully today then I will know more.

      My pains seem to come in a 4-5 weeks rotation? They are never always around like my right and left sided pains.

      do your pains have any patterns?

      Gem x

    • cathy31644
      cathy31644 Gem1384

      Posted

      hi Gemma,

      my last CP attack caused cyst to rupture and that then inflammed liver and caused hepatitis.Dr says pains from hepatitis,but im not sure if thats true.seems no rhymn or reason in when pain comes etc. i am extrememly careful on diet,never more than 5% fat in any 100gr of food.

      no alcohol, small meals little and often.lots fluids.

      Today is a pretty good day,have manged food and no pain and fatigue not to bad.joints a little achey but ok.keep in touch its good to talk.

    • melanie35725
      melanie35725 mandy20434

      Posted

      Hi mandy.

      Know how you feel with doctors. I have had trouble with my pancrease for four years now. I know thre is something wrong. I have had a few tests and scans. But not the ones I need. I have been referred to mental helath because they thinck it is in my mind.. They are not much good.either. Hope you sort things out with them and you get want you need. 

      All the best 

      Melanie

       

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