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Never asked before,could really do with some words and hugs.
Hope your all ok and getting through this crappy illness!
I've not been around for 3 or 4 months for many reasons, and if you don't mind listening this is why. In February my best mate took his own life completely out of the blue. He was in his late 50s, retired at 50, loads of money, house in the country etc. I was racked with guilt as the last time I saw him he wasn't himself and I wished I had delved deeper.
My health and no I don't suffer from health anxiety. I started to feel unwell in October16. In January I developed a pain in my right side which I thought I had pulled a muscle. In the first week of march I developed a severe pain in my left shoulder , nausea and cold sweats, so I took myself off to my gp. He prescribed omeprazole and a sickness tablet. I wasn't to impressed as I thought this was treating the symptoms rather than finding the cause. Since then i've probably been to my gp every 2/3 weeks and said I'm really not feeling well at all. At the end of April my gp finally ordered loads of blood tests and an ultrasound of my gallbladder, kidneys and pancreas that all came back normal. In May my gp weighed me and I was about 19 stone and at the time my alarm bells started ringing as I knew I was around 22 stone at Christmas time. In June I started feeling light headed on top of all my other persistent symptoms, so I went back to my gp and was weighed again, and now weighed 18.7 stone, so my gp referred me to see a gastroenterologist. I went back to my gp 3 weeks later and weighed again I'd lost another 1 1/2 stone in 3 weeks!!! The look of panic on my gp's face was scary, he ordered lots of blood tests including 2 tumour markers, that all came back normal. He changed my gastroenterologist referral to the fast track 2 week maximum wait. I had the appointment within a week and waited 17 days for a CT scan with iv contrast, which I had Monday. No results yet:ohmy:
Can anybody help.
How accurate are tumour marker blood tests?
How accurate are contrast CT scans?
I asked my gp why I haven't had a poop or urine sample test and he looked at me like an idiot. Surely you can tell a lot from this?
I've never felt so ill with such persistent symptoms! Can you loose this much weight this fast and it not be CANCER:shrug:
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Re: Never asked before,could really do with some words and hugs.
Hi Matt,
I' really sorry to hear about your best mate. :hugs: I don't think anyone would doubt you would have been all over it if you had any idea of how bad he felt. And these things can spiral quickly too. You mustn't feel guilty about yourself, even experts can miss how patients feel because we tend to be good at hiding things. Sometimes a person can be feeling depressed and then one event or piece of news tips them over into taking action and it's hard for anyone to be able to stop that.
You're a big guy. Is that a muscular 22 stone? I'm guessing not (sorry mate!) and assuming you have some weight to lose anyway and it's always much quicker at the beginning. Bereavement is a known reason to lose weight and you've had an awful event months before you had your first weigh in. Maybe some of it was that? Have you been eating as normal?
The weight loss seems to have slowed down if by 18.7 you don't mean 18 1/2 stone? If you had cancer, and it was causing weight loss, I'm not sure it would slow down like that, and if you still have a fair bit of weight to lose I would have thought it would continue? I know in my GF's mum's case it dropped off her dramatically and she was well underweight within months.
A lot of bodyweight is water. When people diet, it's this they lose dramatically at first. My bodyweight fluctuates across the day and by pounds over the week. Have you had any bloating that has gone? You've lost a fair bit in the latest one and it would seem unusual for a stop start type of loss to me. Depending on when weight is taken, proximity of meals, etc readings can be up or down and a few pounds can be out due to this alone. This is why consistency is key with readings.
This GP has obviously been messing around throwing pills at you rather than trying to find out what the issue is. But weight loss has various possibilities, not just cancer. There could be some gastro reasons for it and you've been referred to one for a reason. It could be a thyroid issue?
CT scans will be accurate. If they spot something and they can't determine what it is, they head for the next test until they know.
I don't know about tumour marker tests but given what they are for, you would expect them to be very accurate or to at least trigger something to say it can't be determined in order to trigger follow up?
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Re: Never asked before,could really do with some words and hugs.
I am very sorry to hear about your friend :hugs:
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Re: Never asked before,could really do with some words and hugs.
Sorry to hear about you friend BikerMatt. Sending you :hugs::hugs::hugs:
I hope you have the test results soon, hopefully get some answers then.
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Re: Never asked before,could really do with some words and hugs.
Matt, some bacterial infections can cause alot of your symptoms including unexplained weight loss. The parasite bacteria known as helicobactor pylori or h-pylori is one such culprit and more common than you might think and is often the cause of duodenal ulcers. Unfortunately if your GP wasn't thinking about something like h-pylori he may not have tested for it...but did the gastroenterologist test for it Do you know? As others have said, there can be loads of reasons without jumping to cancer.
So sad about your friend, but I don't think you could've helped him Matt, people who want this way out very seldom talk about it. Your body could be reacting to your feelings of guilt and your grief. As you know from people here how much our minds can affect how we are physically. Good luck with the results anyway.
Take care
Cath
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Re: Never asked before,could really do with some words and hugs.
Thanks everyone for taking the time to reply, it's really appreciated :hugs: I'm a crap and slow typist, so will give more of a response tomorrow.
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Re: Never asked before,could really do with some words and hugs.
Thanks Terry, Bee, Magic and Catherine :bighug1:
My mate was such a nice fella, just one of those that was easy to talk to. He never knew about my anxiety so I guess I shouldn't feel guilty about the way he must of been feeling and not knowing.
Catherine, I've had so many blood tests, I presume I've been tested for h-pylori. The gastroenterologist certainly didn't he just ordered the CT scan.
Terry, Yes I went from about 22 stone before Christmas. GP weighed me for the first time in May and I was 19 stone then Start of June 18 1/2 stone then three weeks later 17 stone:scared15: that was about six weeks ago and I'm now 16 stone:scared15: Yes I've changed my diet due to my stomach pains and other symptoms but still eating plenty just better.
Oh and no not fat just 6ft 6 with a bit of a gut:D That's disappearing fast:D
Still at least I can treat myself to some nice new and shinny bike leathers when I feel well enough to ride again and stop losing weight, as my current ones will be a bit baggy.
Annoyed at the hospital, had my CT scan 3 weeks ago, phoned the gastroenterologist department 3 days after and they'd had my results back from the radiologist but the secretary isn't allowed to tell me and was told I have to wait for the gastroenterologist to write to me. How pathetic and disgusting when you've got people waiting and worrying if they have anything sinister! It's a joke!
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Re: Never asked before,could really do with some words and hugs.
I know it's really frustrating and very annoying but the fact that you haven't heard anything from your consultant is very good news as he or she wouldn't hang around if there was anything urgent to treat.
You still need to know though and I hope you don't have to wait too long for that letter-it's holiday season though so the bigwigs are probably all off on their luxury yachts somewhere..!!
Losing your good friend like that must have been truly shocking and not something you get over quickly. No way that you could have predicted or stopped it though, sadly.
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Re: Never asked before,could really do with some words and hugs.
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
pulisa
I know it's really frustrating and very annoying but the fact that you haven't heard anything from your consultant is very good news as he or she wouldn't hang around if there was anything urgent to treat.
You still need to know though and I hope you don't have to wait too long for that letter-it's holiday season though so the bigwigs are probably all off on their luxury yachts somewhere..!!
Losing your good friend like that must have been truly shocking and not something you get over quickly. No way that you could have predicted or stopped it though, sadly.
Thanks Pulisa. I've had my results letter yesterday morning and all normal. A little peeved though the letter was dated 27th July and through my letterbox 9th August.
I got carted off to hospital via ambulance in the early hours of 9th before the ct results letter arrived. I was assessed by the stroke team, ecg's, blood tests and I'm now being urgently referred to see a vascular surgeon. Nightmare:doh:
---------- Post added at 23:54 ---------- Previous post was at 21:58 ----------
Quote:
Originally Posted by
Carnation
:hugs:
Thanks :hugs:
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Re: Never asked before,could really do with some words and hugs.
I'm glad they've come back fine but this must be very frustrating for you? Now a vascular surgeon too. Do they have any ideas what's going on? I bet that was all you needed, a panic over being taken in by ambulance?
Are you feeling a bit better now?
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
MyNameIsTerry
I'm glad they've come back fine but this must be very frustrating for you? Now a vascular surgeon too. Do they have any ideas what's going on? I bet that was all you needed, a panic over being taken in by ambulance?
Are you feeling a bit better now?
Cheers Terry, No not feeling any better, I really don't know what's going on it's been a horrid year and I can't believe all this hasn't tipped me over the edge. I've never felt so ill and it's definitely not anxiety related. My partner phoned 999 I was so light headed I couldn't stand up, my feet were cold, my shins went numb, my left arm and neck went numb, my blood pressure went up to 160/100.
The paramedics were absolutely fantastic. They did an ECG and all the other regulars and felt my feet and said they're taking me straight in to hospital. I was seen by a stroke specialist straight away, cannula straight in my hand, ECG and blood tests. Afterwards I was seen by the a&e doctor who spent about an hour with me checking everything. They sent me home at 6.30am with an urgent referral to the vascular surgeon. So all that on top of everything else that's been happening this year it might be heart related :doh:
Luckily I had my partner with me, her sister lives 2mins away so came round to look after the little one. Got to a&e at 12.00am sent home at 6.30am walked in and the little one woke up. My poor partner had no sleep for 44hours.
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Re: Never asked before,could really do with some words and hugs.
Sending some love and hugs your way Matt,and hopefully the VS can find some answers for you,I will think of you when I'm on a bike run tomorrow.
Lola x :bighug1:
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Re: Never asked before,could really do with some words and hugs.
Thanks:)
What bike have you got?
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Re: Never asked before,could really do with some words and hugs.
I have an old Triumph Bonneville 750,it has been reworked on and a new paint job and I love it. I started off riding a dirt bike then a Honda Goldwing but that was so bloody heavy,I came off it going around a sharp corner so I sold it and bought a Trumpy.:yesyes:
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Re: Never asked before,could really do with some words and hugs.
Wow, a Goldwing! They have reverse gear, don't they?
---------- Post added at 04:34 ---------- Previous post was at 04:30 ----------
She must have been knackered. I bet she slept like a rock the next night.
It could be something easily fixable still. If it was something major given the time involved you would think you would have been in the hospital many months ago. Let's hope it's something the surgeon can resolve and then your life returns to as it was before. .
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Re: Never asked before,could really do with some words and hugs.
I'm so sorry to hear this, Matt. One thing after another..I do hope your appointment with the VS comes through asap and hassle them if there is a delay? Very frightening ambulance experience for you and your partner but at least you were thoroughly assessed although it must be so frustrating that you are being passed around the consultants..
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Re: Never asked before,could really do with some words and hugs.
Sorry to hear about your friend. And I hope you get sorted out soon. I'd be beside myself by now so you're doing a fab job of keeping it together x
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Re: Never asked before,could really do with some words and hugs.
I thought i would restart this thread as i just seem to be getting anywhere with this. I've now been severely off balance and lightheaded for 37 weeks 24/7 non stop. This is on top of all my other symptoms that i've had going on for over 12months and some for 18months.
All this landed me in A&E at the start of August. My GP was told to refer me on an urgent basis to see a vascular surgeon, this ended up taking 10weeks and would have been 16weeks if i hadn't pushed. The outcome was everything was normal and the surgeon said i should see a neurologist. My GP has been totally unwilling to help me, my appt for my neurology appt came through today for 9/5/18 27 weeks after being referred and 9months since being taken to A&E when they thought i'd had a stroke FFS and that's as far as i've got.
I'm full of frustration and i'm not me at all. Once again i've read on here today about someone going to their GP and getting tests and seeing a consultant within weeks. How does that happen?
I've just had ENOUGH!!!!!
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
BikerMatt
I thought i would restart this thread as i just seem to be getting anywhere with this. I've now been severely off balance and lightheaded for 37 weeks 24/7 non stop. This is on top of all my other symptoms that i've had going on for over 12months and some for 18months.
All this landed me in A&E at the start of August. My GP was told to refer me on an urgent basis to see a vascular surgeon, this ended up taking 10weeks and would have been 16weeks if i hadn't pushed. The outcome was everything was normal and the surgeon said i should see a neurologist. My GP has been totally unwilling to help me, my appt for my neurology appt came through today for 9/5/18 27 weeks after being referred and 9months since being taken to A&E when they thought i'd had a stroke FFS and that's as far as i've got.
I'm full of frustration and i'm not me at all. Once again i've read on here today about someone going to their GP and getting tests and seeing a consultant within weeks. How does that happen?
I've just had ENOUGH!!!!!
Hey Matt sorry to hear this It's wonder you coped waiting that long think it's time to change your Gp that is shocking to hear unwilling to help you WTF that's what he is there for?? I feel your pain. would going private be a option for you Matt? Heres a friendship hug from me:bighug1:Keep your chin up mate ATB
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
Bigboyuk
Hey Matt sorry to hear this It's wonder you coped waiting that long think it's time to change your Gp that is shocking to hear unwilling to help you WTF that's what he is there for?? I feel your pain. would going private be a option for you Matt? Heres a friendship hug from me:bighug1:Keep your chin up mate ATB
Thanks Dave, I'm sick of my GP and my hospital/NHS trust it's crap:shrug: but i've run out of steam to be honest. I looked at going private and it was £250 to see a consultant and thought why the f#ck should i, i was paying tax from 16 years old.
Lovely hug!
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
BikerMatt
Thanks Dave, I'm sick of my GP and my hospital/NHS trust it's crap:shrug: but i've run out of steam to be honest. I looked at going private and it was £250 to see a consultant and thought why the f#ck should i, i was paying tax from 16 years old.
Lovely hug!
You are welcome Matt you have had run the run around for way too long no you mustn't run out of steam even though you think you have get some more coal in to that boiler (like on my steam train avatar ;) ) Yes can totally understand what you are saying but if going private gets you the help you need so be it. I am having a operation soon if I go to my local hospital its a 36 week wait but have found a nhs hospital and within the grounds is a private hospital and that's nhs funded and that's where my op is taking place waiting time 12 weeks big difference ;) So perhaps see if you have that private option where you don't pay anything I would look in to that Matt:yesyes: ATB
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Re: Never asked before,could really do with some words and hugs.
Thanks Dave, To be honest i've never suffered depression but the whole saga has made me severely depressed. I'm going to bed and hoping i don't wake up. The NHS has done this to me! It's a closed shop when you check the NHS choices website for waiting times for hospitals in my area, it's all the exact same waiting times, funny that eh all the same trust and exact same waiting times. When it comes to op's one of the private places in my town does NHS work so i will try and get in there.
I'm getting past from pillar to post with no sense of urgency. I've got all these problems going on with my stomach on top of it all and thought i was getting to the end of it all, waited 3months to see the surgeon who says maybe not what the gastro says and was shocked at how little testing the gastro had done. The surgeon was fantastic and sorted the MRCP which i had last week but he wen't on about cancer as i've lost over 8 stone in just over a year. He want's to get to the bottom of my weight loss but thats not his job my GP and gastro should've sorted that last year. He will only do surgery for my hernia as it hurts but won't until he gets to the bottom of my weight loss and other symptoms. Again i'm not happy with that because my hernia bloody hurts.
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Re: Never asked before,could really do with some words and hugs.
It's no good for your mental health getting arsed about , the truth is the NHS has no money and the money it does have it wastes on buying things at crap prices and getting in agencies to supply staff at twice the price , so people like you suffer , watched a programme tonight about cancelled opps where you live makes a huge difference when it shouldn't.
Daft question and forgive me for asking but is there any chance at all anxiety could be behind the stomach problems and weight loss ? I lost a few stone in a few months at my worst, I just couldn't touch food , the cousin of mine who is ill also stopped eating through anxiety and depression is wasn't until he stopped drinking that he got seriously ill , hope that doesn't sound like I'm saying it's just in your head because contrary that what people would have you believe anxiety sufferers can actually get ill for real .
I'll send you a man hug for now usually only issued at funerals and if it does turn out your gp is letting you down put him on the hit list with your sil.:hugs::hugs:
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Re: Never asked before,could really do with some words and hugs.
Why are you seeing a neurologist? Have you been checked over by an ENT specialist for ear problems? Who is investigating your weight loss and how are they doing this? Have you had a recent series of blood tests done including thyroid and blood glucose?
It just seems as if they don't know but are passing you around the houses to look as if they are doing something...
I hope your scan helps in your diagnosis but I'd seriously consider shelling out for a private consultation if you feel it would get you somewhere and if you found a consultant yourself who you felt could help you?
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
BikerMatt
Thanks Dave, To be honest i've never suffered depression but the whole saga has made me severely depressed. I'm going to bed and hoping i don't wake up. The NHS has done this to me! It's a closed shop when you check the NHS choices website for waiting times for hospitals in my area, it's all the exact same waiting times, funny that eh all the same trust and exact same waiting times. When it comes to op's one of the private places in my town does NHS work so i will try and get in there.
I'm getting past from pillar to post with no sense of urgency. I've got all these problems going on with my stomach on top of it all and thought i was getting to the end of it all, waited 3months to see the surgeon who says maybe not what the gastro says and was shocked at how little testing the gastro had done. The surgeon was fantastic and sorted the MRCP which i had last week but he wen't on about cancer as i've lost over 8 stone in just over a year. He want's to get to the bottom of my weight loss but thats not his job my GP and gastro should've sorted that last year. He will only do surgery for my hernia as it hurts but won't until he gets to the bottom of my weight loss and other symptoms. Again i'm not happy with that because my hernia bloody hurts.
I have suffered depression for 25 years so know how bad it is for you and tbh it's not just a money issue with the NHS its a lot more besides like in your case theres no urgency about it even your surgeon was shocked how little was done by the gastro person but bet it wasn't followed up and looked in to that's a lot of weight lost over a year which could be caused by stress yeah like I said try and find a hospital (private) which is funded by the nhs often the same consultants will work in the NHS and also the private sector too, Find you choices and options and take it from there :)
ATB
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Re: Never asked before,could really do with some words and hugs.
Matt,
I'm really sorry to hear you've hit another "pass the parcel" job. It must be incredibly frustrating. When you are so ill the last thing you need it to be chasing around the NHS to do their jobs. When I relapsed I had to chase my therapy around between different parties with referrals and it just feels like there is no ownership at times with the NHS. I was lucky to drop on a nurse, who I suspect thought I was being dumped onto them knowing it wasn't the right pathway, who chasing people around and got me a result.
Sadly we do have to push doctors at times or they sit back. My parents have had that a few times and had to keep going to the GP until he/she rang elsewhere to push doctors at the other side as to what is going on. Hospitals just discharge us but the GP has to own the patient the rest of the time and I think they should be pushed to chase things up for us.
Is there any help from the NHS here? I guess it would mean raising a complaint though and I can completely understand how that might be just too much right now.
Given the situation with your weight you can understand the specialist wanting to rule out cancer but I live in hope this is only about ruling out because losing so much weight over a year and this going on so long makes me think you would be very ill. I know you feel like crap a lot but I just feel like you would be very seriously ill after 12 months if it's shedding the weight off you like that. It's just a guess based on the stories of others I've known who were very ill with cancer and without treatment they would have snowballed much more.
I hope that's not upsetting to hear? It just feels like a possibility that points elsewhere.
Don't be daft asking for help on here mate, you give to others and others will give back to you because of that. :hugs::hugs::hugs:
Keep having a laugh with us on the lighter threads if it helps even a little bit.
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Re: Never asked before,could really do with some words and hugs.
:bighug1:
Matt like Terry said come and join us on the humour thread's,it helps me.xx
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Re: Never asked before,could really do with some words and hugs.
Thanks Bigboy, Buster, Pulisa, Terry and Lola. I will reply a little later when little one has gone to bed.
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
Buster70
It's no good for your mental health getting arsed about , the truth is the NHS has no money and the money it does have it wastes on buying things at crap prices and getting in agencies to supply staff at twice the price , so people like you suffer , watched a programme tonight about cancelled opps where you live makes a huge difference when it shouldn't.
Daft question and forgive me for asking but is there any chance at all anxiety could be behind the stomach problems and weight loss ? I lost a few stone in a few months at my worst, I just couldn't touch food , the cousin of mine who is ill also stopped eating through anxiety and depression is wasn't until he stopped drinking that he got seriously ill , hope that doesn't sound like I'm saying it's just in your head because contrary that what people would have you believe anxiety sufferers can actually get ill for real .
I'll send you a man hug for now usually only issued at funerals and if it does turn out your gp is letting you down put him on the hit list with your sil.:hugs::hugs:
Thanks for the man hug Buster!!
It's not anxiety related. I've had a dull constant ache in my right rib cage liver area since Jan2017, that intensifies like someone has stuck a knife in me. The same ache and pain in my mid to upper back since Oct2016. Nausea since March2017. Light coloured poo and dark urine since June2017 and i've now had this severe off balance and dizziness since the end of July2017. And started to loose weight at the start of 2017. Yes i'm eating ok and more healthy but healthy is less high in calories. I'm still getting about 2500 calories a day though.
Cheers Buster
---------- Post added at 17:40 ---------- Previous post was at 16:11 ----------
Quote:
Originally Posted by
pulisa
Why are you seeing a neurologist? Have you been checked over by an ENT specialist for ear problems? Who is investigating your weight loss and how are they doing this? Have you had a recent series of blood tests done including thyroid and blood glucose?
It just seems as if they don't know but are passing you around the houses to look as if they are doing something...
I hope your scan helps in your diagnosis but I'd seriously consider shelling out for a private consultation if you feel it would get you somewhere and if you found a consultant yourself who you felt could help you?
Hi Pulisa, Thanks for taking the time to reply:hugs:
Yes i had blood tests in Oct16, April17, June17, Aug17 and Oct17. They all included thyroid and glucose. The bloods i had in Oct17 was pretty much everything plus it included full bone profile bloods in prep for my vascular appt.
An ENT appt has never been suggested. I saw the vascular consultant as that's what A&E suggested. When that checked out fine the consultant said i should see a neurologist. Now bearing in mind i've had all these other stomach issues going on and was taken to A&E when they thought i'd had a stroke with the, dizziness, off balance, freezing cold feet & hands, numb feet, numbness in my face and my blood pressure hit the roof. All that's happened is i've seen the vascular consultant and by the time i see the neurologist on May 9th it will be 9months since being taken to A&E and that's crap!!
The surgeon i met on the 28th Feb was fantastic and pretty much said that he want's to get to the bottom off my 8 stone weight loss rather than just taking my gallbladder out. Yes after pushing the gastro for nearly 5months after seeing him for the 1st time for further tests and eventually getting another ultrasound at the end of Nov that showed a thickened gallbladder wall and a shadow i thought great i'm getting somewhere. It took 3months for my surgeon appt and that's when he sorted this MRCP and upper abdo MRI as he said the shadow in my gallbladder could be a polyp, stone or tumour. The scan was checking my liver, gallbladder, billiary tree, pancreatuc duct and pancreas. It's frustrating and i had the MRI/MRCP within 4 weeks but the surgeon want's an endoscopy also but i've heard nothing on that. Simply the gastro was dismissive and uninterested and it's not the surgeons job to sort these tests.
As for paying private and what really pi##es me off is i had private medical for 10 years which probably cost me over £50000 and never used it. During this time i was paying vast tax and was an employer at 22. Now i've not worked for a couple of years in an attempt to rid myself of anxiety and work out what career move i won't to make, monies running out and i can't afford to pay to private to see a consultant private. Besides the NHS doesn't seem to know what it's doing so i don't really know what consultant i would need to see.
Bit of a rant at the end sorry!
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Re: Never asked before,could really do with some words and hugs.
The reason I asked about ENT was due to the dizziness etc. The cold feet and hands plus facial numbness could be anxiety-related in view of your A&E emergency trip. Do you still have these symptoms?
I don't want to say I hope the MRCP comes up with something but I hope it gives you some answers because you've got a lot of physical stuff going on and haven't got a diagnosis despite a variety of tests and consultants saying "we don't know" .
I would stick with your surgeon who arranged the MRCP and when you see him for the results push for an urgent endoscopy in view of your weight loss and the amount of time you have been left undiagnosed and with obvious gastro symptoms. You shouldn't have to wait long for an endoscopy especially if you stress how long you have been having symptoms and how you are thinking of taking things further with a formal complaint etc.
Feel free to rant away!
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Re: Never asked before,could really do with some words and hugs.
I still have the off balance and dzziness. I've had it continuos since the end of July non stop. I've not driven since then, it's that bad. When i sit down it's like the seat is bouncing, when i stand up it's like somebody is sitting on shoulders whilst somebody is trying to pull my feet from under me, when i lay down it's like the bed is a swing or it's being tipped up. My hands are warmer but my feet are still stone cold. The vascular consultant fully checked my circulation and my results were slap bang in the middle of the normal range. I still get a little bit of numbness in my face. Don't really know about my blood pressure. I can put up with my gastro issues and pain but the off balance is horrific.
I really hope the MRCP shows something to be honest and i had my letter within 3 days of my surgeon consultation so i know he's on the ball and was glad that he said he is going to see me again after my tests, again this is not his job but he seemed efficient. The gastro tried to discharge me after a CT scan and that was going to be it.
I know that all of my symptoms can be caused by anxiety but i can 100% say i've got some not so good health things going on and i know it's not anxiety related. Yes i'm super anxious at the mo and had my 1st panic attack in years this morning, but no bloody wonder.
Thanks Pulisa
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Re: Never asked before,could really do with some words and hugs.
So it's not vertigo but is related to position changes and has been constant for months? I'm not surprised you aren't prepared to risk driving. That's really weird about your circulation being normal- I have Raynaud's and that is much worse when I'm stressed.
I hope you would have heard by now if there was something really urgent on the scan but I'd start phoning up about your follow up appointment. Make a nuisance of yourself? For your own sanity you need to know what's shown up on the scan and what's the next move.
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
pulisa
So it's not vertigo but is related to position changes and has been constant for months? I'm not surprised you aren't prepared to risk driving. That's really weird about your circulation being normal- I have Raynaud's and that is much worse when I'm stressed.
I hope you would have heard by now if there was something really urgent on the scan but I'd start phoning up about your follow up appointment. Make a nuisance of yourself? For your own sanity you need to know what's shown up on the scan and what's the next move.
Is Raynaud's related to circulation? If so does it make your extremities cold?
Yes the radiologist said my results would be 2 weeks. It will be 2 weeks this Wednesday so i will call tomorrow to get the ball rolling. I suppose i will phone the surgeons secretary. I doubt she is allowed to say anything but it will get the ball rolling.
Yes it's horrific the off balance and dizziness. It also when i'm sitting feels like someone is pushing me in the back or i'm being pushed back into the seat. It's been unrelenting.
I bet your Husbands watching the Masters?
Thanks Pulisa.
---------- Post added at 21:11 ---------- Previous post was at 21:04 ----------
Yes Pulisa it's been constant since the last Friday in July.
---------- Post added 09-04-18 at 00:39 ---------- Previous post was 08-04-18 at 21:11 ----------
Quote:
Originally Posted by
Bigboyuk
I have suffered depression for 25 years so know how bad it is for you and tbh it's not just a money issue with the NHS its a lot more besides like in your case theres no urgency about it even your surgeon was shocked how little was done by the gastro person but bet it wasn't followed up and looked in to that's a lot of weight lost over a year which could be caused by stress yeah like I said try and find a hospital (private) which is funded by the nhs often the same consultants will work in the NHS and also the private sector too, Find you choices and options and take it from there :)
ATB
Thanks Dave, I know plenty of people who work within the NHS and the amount of money that's wasted that they tell me about is a joke.
---------- Post added at 00:50 ---------- Previous post was at 00:39 ----------
Quote:
Originally Posted by
MyNameIsTerry
Matt,
I'm really sorry to hear you've hit another "pass the parcel" job. It must be incredibly frustrating. When you are so ill the last thing you need it to be chasing around the NHS to do their jobs. When I relapsed I had to chase my therapy around between different parties with referrals and it just feels like there is no ownership at times with the NHS. I was lucky to drop on a nurse, who I suspect thought I was being dumped onto them knowing it wasn't the right pathway, who chasing people around and got me a result.
Sadly we do have to push doctors at times or they sit back. My parents have had that a few times and had to keep going to the GP until he/she rang elsewhere to push doctors at the other side as to what is going on. Hospitals just discharge us but the GP has to own the patient the rest of the time and I think they should be pushed to chase things up for us.
Is there any help from the NHS here? I guess it would mean raising a complaint though and I can completely understand how that might be just too much right now.
Given the situation with your weight you can understand the specialist wanting to rule out cancer but I live in hope this is only about ruling out because losing so much weight over a year and this going on so long makes me think you would be very ill. I know you feel like crap a lot but I just feel like you would be very seriously ill after 12 months if it's shedding the weight off you like that. It's just a guess based on the stories of others I've known who were very ill with cancer and without treatment they would have snowballed much more.
I hope that's not upsetting to hear? It just feels like a possibility that points elsewhere.
Don't be daft asking for help on here mate, you give to others and others will give back to you because of that. :hugs::hugs::hugs:
Keep having a laugh with us on the lighter threads if it helps even a little bit.
Terry, Thanks for such a detailed well thought out reply:)
I really don't understand how my weight loss has just been palmed off by GP's and the Gastro. It's worrying but at least i now have the surgeon on my side who was very good, but it really isn't his job to sort out these investigations i've got to get through.
Thanks Mate and for the :hugs:
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
pulisa
That's really weird about your circulation being normal- I have Raynaud's and that is much worse when I'm stressed.
Do you also have tinnitus by any chance, Pulisa?
Raynaud's Syndrome is a nerve disorder causing blood vessels to go into spasm, I believe, thereby restricting blood flow to extremities.
You are a brave chap, Matt. You've certainly got a lot going on right now and I wish you well. Chins up, old boy :shades:
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
KK77
Do you also have tinnitus by any chance, Pulisa?
Raynaud's Syndrome is a nerve disorder causing blood vessels to go into spasm, I believe, thereby restricting blood flow to extremities.
You are a brave chap, Matt. You've certainly got a lot going on right now and I wish you well. Chins up, old boy :shades:
Well I have a low level tinnitus which is more obvious if I think about it but it's no big deal, KK. The Raynaud's is very annoying but only affects my fingers and toes.
Are you seeing a General Surgeon or one with a speciality, Matt?
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
KK77
Do you also have tinnitus by any chance, Pulisa?
Raynaud's Syndrome is a nerve disorder causing blood vessels to go into spasm, I believe, thereby restricting blood flow to extremities.
You are a brave chap, Matt. You've certainly got a lot going on right now and I wish you well. Chins up, old boy :shades:
Thanks KK it means a lot.
I'm not brave i'm bricking everything and it's all set my anxiety off big time:doh:
---------- Post added at 16:00 ---------- Previous post was at 15:58 ----------
Quote:
Originally Posted by
pulisa
Well I have a low level tinnitus which is more obvious if I think about it but it's no big deal, KK. The Raynaud's is very annoying but only affects my fingers and toes.
Are you seeing a General Surgeon or one with a speciality, Matt?
General surgeon, but the guy i saw at the end of Feb was the surgeons registrar. To be honest he was more on the ball than Gastro though.
---------- Post added at 16:10 ---------- Previous post was at 16:00 ----------
I phoned the general surgery secretary today, no results yet. She told me that the 2 week wait for the results that i was told was very optimistic. She also told me she can't tell me the results anyway which i thought would be the case. What a pain in the a#s#!
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Re: Never asked before,could really do with some words and hugs.
Honestly, The NHS is in a terrible state. Had a lift from the bust stop this morning.
The lady told me she was waiting for the results of her brain MRI results.
Takes up to sixteen weeks for results!!!!!!
Good Luck BM x
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Re: Never asked before,could really do with some words and hugs.
Quote:
Originally Posted by
Magic
Honestly, The NHS is in a terrible state. Had a lift from the bust stop this morning.
The lady told me she was waiting for the results of her brain MRI results.
Takes up to sixteen weeks for results!!!!!!
Good Luck BM x
Thanks Magic, Yep it's crap!!
My Mum is 77, she was diagnosed with a heart valve problem through an echo last May but didn't get to see a cardiologist until the Autumn. He referred her for a heart CT scan which she waited about 14 weeks for. She then waited until January to see the cardiologist again who said they could control her problem with meds, but he had to write to her GP for him to prescribe. Guess when she got her prescription................... last f###### week!!!!
Nearly a year from 1st diagnosis to work out and prescribe a course of action!!!!
---------- Post added at 19:20 ---------- Previous post was at 19:18 ----------
Oh and i think she waited about 4 months for the echo in the first place!!!
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Re: Never asked before,could really do with some words and hugs.
Do you have to wait for the surgeon's secretary to contact you to make an appointment with him? If so what a pain. I can't see why things take so long to come back-I suppose the only consolation is that you would be seen quickly if anything really alarming had shown up.