Hi there - Hope you don't mind me whinging on the first day
donboon
Member Posts: 20
Just been advised to copy this over from the other posting:
Hi, I’m Dave
I’m a few days off being 61 and I’ve been suffering with pain since I was 40.
The experts, all of them, say it’s in my head; then contradict themselves, expertly.
When I was 19, I was serving in the RAF and told by their specialist I had severe arthritis in my neck. The pain continues and you get on with it but as other complications developed matters only got worse. Recently [TEXT DELETED] x-rayed my neck and said there was nothing wrong.
In 1992 I was diagnosed with Ankylosing Spondylitis. Given all the usual meds and suffered all the side effects including stomach bleeding and IBS. Since then, my eldest daughter has been diagnosed with severe Fibromyalgia and my sister and my mother. [TEXT DELETED] say I don’t have that either.
The specialist can’t give me anything else due to adverse reactions so I’m limited to a cocktail of painkillers.
Added to that, in 1992 I began complaining of severe chest pains after a 140 mph head on collision. I was told, after full examination there was nothing wrong, it must be muscoskeletal pain from my back problem, they said. Wasn’t I told I don’t get pain, it’s all in my head?
The pains became excruciating, in and out of A&E, still nothing wrong they said. In December last year, 22nd to be precise, the cardiology consultant finally gave up and said there was test that would prove he was right. I had an angiogram and he came to us with great sadness, I owe you an apology; you should have been dead by now but by some miracle you’ve hung on. Yes the pain was real and it was telling me that two of my arteries were 90% and one was 75% blocked. Fortunately I hadn’t had a heart attack. Having realised his mistake he got me into the London Heart hospital three weeks later for an urgent triple by-pass. Again [TEXT DELETED].
After 12 years of complaining about chronic back pain and legs collapsing I managed to persuade my GP to get me a second opinion at the [TEXT DELETED]. Immediately they noticed a problem and put me in for an MRI on the lower back. It revealed severe osteoarthritis at the L5/S1 with root canal narrowing and OA in the left hip and pelvis. Could this be the cause of all my pain and legs collapsing?
NO, the neurologist said, without so much as a single test. He has ruled the problem still lies with my brain and in addition to reading on the subject further he now suggests I take an anti epileptic drug that’s being trialled. Ever get the feeling you’re part of a wider experiment?
To make matters worse, I received DLA for over twelve years on higher rate mobility and middle rate care until June this year. It was not renewed because according to the DWP I have been cured and my medical records do not support my claim.
Despite the triple by-pass which has left me with further severe heart complications such as a damaged thyroid and severely complicated atrial fibrillation I don’t recall being cured of anything.
I’m on a cocktail of drugs that can damage my liver and destroy my thyroid, turns my body ice cold and makes me pass out if I try to exert and now they want me to take an epilepsy drug to cloud my mind even further.
I would have thought my condition was proven and beyond doubt so am I missing the point somewhere or is this the normal way to treat people? Has anyone else been subjected to continual maltreatment and then had their DLA stopped?
Incidentally, thanks’ for giving me the space and place to complain. I’m hoping someone can tell me where I’m going wrong.
[Hi Donboon,
I've had to removed references to a specific hospital. I appreciate that you've had a bad experience, but Arthritis Care could be liable for such opinions expressed on the forum.
All the best,
Moderator(T)]
Hi, I’m Dave
I’m a few days off being 61 and I’ve been suffering with pain since I was 40.
The experts, all of them, say it’s in my head; then contradict themselves, expertly.
When I was 19, I was serving in the RAF and told by their specialist I had severe arthritis in my neck. The pain continues and you get on with it but as other complications developed matters only got worse. Recently [TEXT DELETED] x-rayed my neck and said there was nothing wrong.
In 1992 I was diagnosed with Ankylosing Spondylitis. Given all the usual meds and suffered all the side effects including stomach bleeding and IBS. Since then, my eldest daughter has been diagnosed with severe Fibromyalgia and my sister and my mother. [TEXT DELETED] say I don’t have that either.
The specialist can’t give me anything else due to adverse reactions so I’m limited to a cocktail of painkillers.
Added to that, in 1992 I began complaining of severe chest pains after a 140 mph head on collision. I was told, after full examination there was nothing wrong, it must be muscoskeletal pain from my back problem, they said. Wasn’t I told I don’t get pain, it’s all in my head?
The pains became excruciating, in and out of A&E, still nothing wrong they said. In December last year, 22nd to be precise, the cardiology consultant finally gave up and said there was test that would prove he was right. I had an angiogram and he came to us with great sadness, I owe you an apology; you should have been dead by now but by some miracle you’ve hung on. Yes the pain was real and it was telling me that two of my arteries were 90% and one was 75% blocked. Fortunately I hadn’t had a heart attack. Having realised his mistake he got me into the London Heart hospital three weeks later for an urgent triple by-pass. Again [TEXT DELETED].
After 12 years of complaining about chronic back pain and legs collapsing I managed to persuade my GP to get me a second opinion at the [TEXT DELETED]. Immediately they noticed a problem and put me in for an MRI on the lower back. It revealed severe osteoarthritis at the L5/S1 with root canal narrowing and OA in the left hip and pelvis. Could this be the cause of all my pain and legs collapsing?
NO, the neurologist said, without so much as a single test. He has ruled the problem still lies with my brain and in addition to reading on the subject further he now suggests I take an anti epileptic drug that’s being trialled. Ever get the feeling you’re part of a wider experiment?
To make matters worse, I received DLA for over twelve years on higher rate mobility and middle rate care until June this year. It was not renewed because according to the DWP I have been cured and my medical records do not support my claim.
Despite the triple by-pass which has left me with further severe heart complications such as a damaged thyroid and severely complicated atrial fibrillation I don’t recall being cured of anything.
I’m on a cocktail of drugs that can damage my liver and destroy my thyroid, turns my body ice cold and makes me pass out if I try to exert and now they want me to take an epilepsy drug to cloud my mind even further.
I would have thought my condition was proven and beyond doubt so am I missing the point somewhere or is this the normal way to treat people? Has anyone else been subjected to continual maltreatment and then had their DLA stopped?
Incidentally, thanks’ for giving me the space and place to complain. I’m hoping someone can tell me where I’m going wrong.
[Hi Donboon,
I've had to removed references to a specific hospital. I appreciate that you've had a bad experience, but Arthritis Care could be liable for such opinions expressed on the forum.
All the best,
Moderator(T)]
0
Comments
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Hi again, Dave!
I cannot see where you are going wrong - it appears to be everyone else. :roll: We do put our trust in the medical profession because that is all we have to go on. You can only do so much ranting and raving to the medics that it is not in your mind and that you are in pain etc. You really have had an incredibly rough deal, along the way. Also with the DLA being stopped too. It just doesn't make sense.
Why is a neurologist involved after the second opinion when the MRI showed up severe OA etc. This is very more than likely why you are in such pain and your leg collapses on you.
You take up as much space as you wish, Dave, on this forum. That is what it is here for.
I wish I had some answers for you.
Look after yourself,
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
elnafinn wrote:Hi again, Dave!
Why is a neurologist involved after the second opinion when the MRI showed up severe OA etc. This is very more than likely why you are in such pain and your leg collapses on you.
Elna x
The [TEXT DELETED] Nuerologist just sat me on the bed, tapped knees and foot then said everything is fine despite my left lower leg and foot being totally numb and showing no reaction to his tests.
I asked if he had x-ray vision or a crystal ball but he made it very clear he was a friend of the nuerologist at [TEXT DELETED] so was agreeing with her opinion.
In a grin he said I should be grateful I've had the benefit of two specialist confirm the same. Closing ranks is the name of the game.
[Hi Donboon,
I've had to removed references to a specific hospital. See post above.
All the best,
Moderator(T)]0 -
hI Dave
My goodness you have been through the mill!
I am so glad they found the heart problems in time - though only just I reckon :shock:
As Elna says you take up as much time on here as you want . We are here to listen to each othere and share the benefit of our won experiences.
I don't think you have been treated at all well and really don't know what to suggest to get to the bottom of it all.
The anti epileptice drug...is it gabapentoin or pregablin? If so do give it a try as a few of us are on those as it also blocks nerve signals to the brain so can help. It is worth a try?
I hope one of the gang are able to make some suggestions to help you with your issues.
In the meantime keep posting
Take care
Toni x0 -
My god Dave the old boy's network is more powerful than I had imagined,how bad have you got to be?, moan away mate vent your spleen it's the least I would expect you to do, I hope you get things sorted soon. :shock:0
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Hi Dave............
You from my neck of the woods eh???
Hell, going 'TO' L&D for a second opinion.......
I've spent a lot of my life going 'FROM' L&D for a second opinion....
Sounds like you've been run up a lot of garden paths....
Beggars belief how the 'system' works.............or rather how it doesn't work....
Well, Now you here joint in with us lot..............We got the lot here........
Rob xRob0 -
Hi there Dave.
As I read your post I could actually feel shivers up and down my spine. I so sympathize with you, the hardest (one of the hardest ) part is getting a diagnoses and you havent really had one properly.
I always say "they " use me to practise on - even an op to straighten my toe they couldn't get right !
I suffered the pains of Fibromyalgia for years before I found all the symptoms on the net, my GP almost grudgingly then agreed thats what it was. I have OA & RA also then found I had Angina last year. Try keep your spirits up & have a rant on here, we all understand. Its hard to crack the old boy network, keep at them :roll: :roll:
luv
Dolly :shock:0 -
Seems to me you've been through the Mill, I'm sorry that its proving so hard to get a diagnosis. I don't know what else to suggest, apart from keep on telling them and hoping someone will come up with an answer for you. The only good thing is that they found the heart problem before you had a heart attack.
Don't worry about moaning and ranting on here, we all do! Its a safety valve for some of us!
Love Sue0 -
Hi Dave,Im from [TEXT DELETED] origanally & have had yrs of trying to prove to them i had back problems.I got sent from 1 department to the other for many yrs to no avail.Appartently there was nothing wrong with my back even thought Id had a serious motorcycle accident where my bruising was from my neck to my backside.I was in [TEXT DELETED] for a fair while,under going operations to repair my lacerations to my foot,tendons,ligaments & skin graft .
At this time i was17yrs old & found the treatment i got aferwards was terrible,but i wont go into that here.
I even sent offor my medical records & the main consultant report that i wanted to check was missing :?
23yrs later the new hospital im attending diagnosed me with Osteoarthritis,spondylosis & later a prolapsed disc at L4/L5.Then in oct this yr a got Fibromyalgia dx.
If youve not given the Gabapentin or Pregabalin a try i would say please give it a try as its knocking out most of my nerve pain giving me some of my life back.
I hope that is some help.
if you need to ask anything else please do.
debs
[Hi minky67,
I've had to removed references to a specific hospital. I appreciate that you've had a bad experience, but Arthritis Care could be liable for such opinions expressed on the forum.
All the best,
Moderator(T)]0 -
hi mods,sorry didnt realise.
debs0 -
Hi Dave, I've just read your post. What an awful time of it you've had. Unfortunately I've found out recently that it's honestly not uncommon. I'm saddened and shocked at the treatment you and others have had, in particular regarding your diagnosis. I hope things improve for you and that you can get some measure of support and relief at being on here and being able to let off steam too.
rita0 -
How arrogant and condescending can you get?
Here are the polite terms given to my GP regarding my recent visit to the neurologist.
“I have explained that all pain, regardless of cause, is a brain phenomenon, where the brain ‘decides’ that an incoming sensation is unpleasant rather than neutral or pleasant.” (Get away!)
“The neurological examination was dominated by functional overlay of a non-organic kind.”
In other words: after tapping his lifeless foot and knee to which there was no response I decided there was nothing wrong with the person other than having illusions of pain due to a mental condition.
He finishes by saying “I will not, however, be at all offended if he would prefer to continue with psychological strategies.”
Perhaps I should sue my mother for not teaching me that pain is something to laugh & joke about. Can you imagine the response and treatment I’d get if I laughed and joked about my angina? Probably locked up for life, that is until I conveniently passed away.
He’s suggested I try Gabapentin as a pain blocker. Any advice?0 -
Hi Dave,
Have just read you posts and am horrified at the way you have been treated!! neurologist is condescending and arrogant..definitely....but dangerous too as you are left to feel that the pain is 'all in your head' and could be put off seeking the treatment you need.
'...will not be offended if you look for 'psychological' resources..' eh? I'm surprised that having gone that far they haven't suggested that you go to see the tooth fairy!!
What does your GP say? s/he knows you best so is in a position surely to give you support and advice and to challenge the so called specialists?
Really hope that things get better for you.... we are here for you. Dorcas x0 -
Hi there!
I am no good with advice but just want to say I am so glad you have found this forum & I'm sure you will get so much help & support from it. It has become a real lifeline to me, I know. Don't worry about moaning, that's what it is for!
I am shocked that these medics have tried to pull the wool over your eyes ( more to the point - cover themselves) when you are obviously a highly intelligent guy. Hopefully you will soon get loads more practical advice on here.
love Pennie x0 -
Well, having suffered the same for so long it just makes you wonder why you bother seeing them.
I've booked in to see my GP Monday to have a go at the report. If necessary I'll take it all the way to the BMA as a malpractice.
The report from this consultant is just backing up his collegue at their sister hospital which was based on an earlier report from a consultant in Warwick nearly twenty years ago. His original report alleges all sorts of untruths about my character in the RAF and childhood history. This apparently justifies the need to suggest I won't accept authority and have an imaginative mind. I agree to both but not in the context they refer too.My solicitor gained this "hidden" information when we had an earlier accident and I was so outraged I wrote a twenty nine page history of my life during those two periods to set the record straight.
Apparently the medical records don't refer to or reflect that letter so the saga goes on.
Is there a section on this forum that refers to taking action against their GP's and consultants I wonder?0 -
There is a guy called Joseph-the living legend-he knows everything!And lots of people on this forum have suffered simililar probs(most not as bad as you have).Joseph will hopefully see your thread and comment.I cant helpas I have always had good care.
ElizabethNever be bullied into silence.
Never allow yourself to be made a victim.
Accept no ones definition of your life
Define yourself........
Harvey Fierstein0 -
Thanks Elizabeth, I'll look out0
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