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Post by portiabuzz on May 2, 2015 20:31:35 GMT 1
Oh wills that's horrendous.. They need to help you not fob off with pills. . Am so sorry.. xx
Sent from my SM-G800F using proboards
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Post by mollichop on May 4, 2015 17:17:50 GMT 1
Omg! How awful for you Wills, I pray 'they' see some sense very soon and get you sorted
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wills
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Post by wills on May 5, 2015 8:46:56 GMT 1
Me to.
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Post by antares on May 5, 2015 21:42:58 GMT 1
Oh gawd wills, that doesn't sound good at all, how annoying for you
Keep at it, pester them!! This is your life and your health, take as much control as you possibly can!!
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wills
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Post by wills on May 5, 2015 21:58:04 GMT 1
I am thinking about making an official complaint? I know it's a touchy subject as the NHS is stretched as it is and I do appreciate all they do, but I really feel like I have been let down and fobbed off.
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Post by antares on May 6, 2015 7:27:05 GMT 1
Not sure I would complain just yet, I might send a letter or call the original consultant who asked for the scan and see if they can give an extra push or even put a request through. Can you afford to go back for another private consultation? Or go private to your current consultant, air your views and see if they will push you up the waiting list?
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wills
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Post by wills on May 6, 2015 9:07:22 GMT 1
I can't really afford to go private as I have been of work and surviving on stat sick pay (£72) a week since January private consultation cost £200 with a follow up of £140 plus I don't really see why I should have to go private? There is something wrong with me, that much we can all agree on, I don't mind waiting for scans etc but I'm not even on the list and I don't know why I am being expected to suffer for another 8 weeks before being reconsidered when I have suffered the same symptoms for months with no relief and no answers.
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Post by antares on May 6, 2015 9:26:13 GMT 1
Then I would call, email or send letter to your current consultant and explain, you've thought about the risks, listened to their reasons etc but you would really like to be given an appointment as soon as possible for the scan. If they still don't listen then complain
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wills
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Post by wills on May 6, 2015 10:52:46 GMT 1
Thanks I will do that, it's just so nerve wracking not knowing what it is.
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Post by antares on May 6, 2015 11:40:59 GMT 1
Oh I'm sure it must be pretty scary wills. A friend of mine went through something similar a couple of years ago - she has a very rare condition but one of those things that is diagnosed by ruling other illnesses out rather than a straight forward diagnosis You do the right thing to keep pushing I wish you good luck!
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Post by HolsBols on May 7, 2015 13:49:58 GMT 1
I'm so sorry you're going through this Wills. I had similar symptoms for 5 months, but due to my age making me low risk I had to try various drugs cycles and jump through hoops before I could even be referred to have an endoscopy. Like you, I spent every day imagining the worst.... Various tests came back fine or inconclusive. If I ate, I was sick, if I didn't eat I got horrendous heart burn and vid reflux that made me sick. I could sleep because of the reflux and heartburn... It's a miserable existence and I'm not surprised you are really struggling!
I don't know how mine disappeared... I was on a 30 day course of dissolvable ranitidine that I had to have 3 times a day (utterly disgusting but anything to feel better) and after that I would be referred for an endoscopy. There had been no improvement and I was on my last couple of days when I was going to a local festival for the weekend. As I'm sure you know, alcohol was painful but I wasn't prepared to let it takeover my life so I had a few drinks. It literally disappeared overnight despite those few drinks being excruciating! Realistically I think it was the ranitidine but very very odd! Don't give up hope that one day it'll just switch itself off!
The best advice I was ever given for it though, was you can't overdose on gaviscon (told by my drug scientist brother in law who specialised in gastric illnesses) and I literally swigged it from the bottle! He thought it was gastritis which would make sense with the ranitidine...
I hope things start to improve for you soon. No one really understands the misery and the exhaustion associated with constant pain and inability to eat. Be kind to yourself xx
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wills
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Post by wills on May 8, 2015 21:53:01 GMT 1
Using your age is infuriating isn't it, I feel like a year of my life has been wasted and no end in sight and I am only in my early 20s!
Your symptoms sound similar to mine so at least there is hope for me yet! I have had two endoscopes and both have shown a couple of things that have been treated but not resolved the issue. Hence why I am pushing for the ct scan -I just want to know now that it is definitely not something more sinister, tbh so long as they can assure me it's not life threatening then I will be able to get on with it, even if they can't get to the bottom of it I will learn to deal with it.
Gaviscon has been my best friend for a wee while now, swigging from bottle is a regular occurrence the these days! I am surprised you managed alcohol the thought of it is enough to keep me away as most days I feel like I do when I have a hangover. I am glad your symptoms cleared up.
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Post by HolsBols on May 9, 2015 14:10:48 GMT 1
I didn't manage much in the way of alcohol lol it was far too painful but part of me has always wondered if it helped because that was the first time I had touched it...! Although thinking about it I had 2 days without any drugs because it was bank holiday and ranitidine stopped on the Saturday, I was still bad on the Saturday and Sunday but then cleared on the Monday-not a bloody clue!! I really hope they get to the bottom of it for you... It's an utterly miserable existence and you've definitely got it worse than I ever did! Hugs to you xx
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Post by jennyb on May 9, 2015 21:33:24 GMT 1
Write things down and ask for time with your consultant to discuss your case. Say you have considered your last meeting with him and have some questions and would like to discuss the plan with a view to amending it. Sounds like he's safeguarding you re radiation, without really realising how bad you are feeling. Complaints are fine, but from experience, they will take much longer to resolve than a chat with your doc. Try that first. I did similar once, consultant had advised leaving me to see if symptoms resolved, I phoned a week later to say I was feeling worse and would they operate. Was private, but glad they saw me - was not ovarian cyst as they thought, but chronic undiagnosed ectopic pregnancy with ruptured tube and everything. How I didn't get septicaemia, I'll never know!!
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wills
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Post by wills on May 10, 2015 20:07:15 GMT 1
Write things down and ask for time with your consultant to discuss your case. Say you have considered your last meeting with him and have some questions and would like to discuss the plan with a view to amending it. Sounds like he's safeguarding you re radiation, without really realising how bad you are feeling. Complaints are fine, but from experience, they will take much longer to resolve than a chat with your doc. Try that first. I did similar once, consultant had advised leaving me to see if symptoms resolved, I phoned a week later to say I was feeling worse and would they operate. Was private, but glad they saw me - was not ovarian cyst as they thought, but chronic undiagnosed ectopic pregnancy with ruptured tube and everything. How I didn't get septicaemia, I'll never know!! Jesus that's really lucky Jenny, could have ended up very different for you. I have an appointment with him in 8 weeks (well about 6 now) it was a struggle to get one for the 8 weeks even though he had written that on my referral for me as they original letter sent to me was 4 months then when I called I got the usual "the clinic is very busy" blah blah blah. I have to go back to my gp next week for bloods, so I will say to him again although I get the feeling it will be the same as before with them telling me I just have to be patient - I have no patience left. There is very little left I am sick of being sick. I am tired of not being taken seriously and being fobbed off left right and center. I just want an answer. I don't think a complaint would help me now but was kind of hoping it might help someone else in the future.
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