After all that this back specialist told me, confirming area of problem, confirming it AGAIN after looking at X-Ray and then confirming previous NHS MRI was on only area of my back that did not have a problem, also repeated by radiologist, I now get told the MRI is normal?!
That is NOT what she says on my audio recording repeatedly that is already up on here!!!
Mind you I did find it odd that my MRI took place lying down as there is NO WEIGHT baing placed on your back when you do this and seems a trifle odd to me. Backed up by the fact that my problems were also PICKED UP in the X-RAYS I had performed by a chiropractor which WAS PERFORMED WHILE STANDING!!
So if someone can please explain how an experts opinion can swing one way and then the other while scans and x-rays are performed in odd ways I would be happy to hear.
The letter makes no mention of being contacted by that Mark chap of Biomechanics and I am now really furious and I can tell you that when I see my GP I am going to pull absolutely no punches in my accusations towards the NHS senior staff.
I will also absolutely insist that I am seen or referred to Professor Mary Reilly of the National Hospital of Neurology in Queen's Square in London.
I have an appointment on 2nd January 2013 with my GP and I am going to tell him straight about both the appointments, god I wish I had actually gone back home to get the phone for the Biomechanics appointment now but thought that THIS TIME I would be sorted out properly, and accuse them of fucking up my life and that they are not going to get away with it.
Depending on what he says I am also prepared to give him this blog address as I have kept this hidden from him and NHS staff are going to need to decide whether they truly are Doctors or not! Well that is if what I was told about being sent for neurology tests also gets booted into touch too?!
At the end of the day that Mark of Biomechanics said that I must have a Neurological Disorder and that caused me to say I already suffered from one and when he realised I had Restless Leg Syndrome his face was a picture. I believe it was a combination of "FUCK ME HOW DID EVERYONE MISS THAT LINK?!" along with "OH SHIT MAYBE HE IS NOT MAKING IT UP?!" LMAO.
But I am getting used to these about faces by the NHS and seems to happen with every turn so two in a matter of weeks will spell COFRIMATION FOR ME and I am afraid DOOM for the NHS senior management. Tsk-Tsk.
To say I am utterly blown away and angry is an understatement but you can probably tell that from this post?!
The only other people recommended to my by Karen Butcher of www.cmt.org.uk are ...
Well here is the whole email copy and pasted!!
"
Dear Martin
Many thanks for explaining to me all the problems that you’ve had over the years. I’m sorry that the NHS appears to have let you down in finding a solution to all these issues, which may or may not be CMT – I can’t say, obviously!
You do need to see a neurologist and see if this can get sorted out, once and for all.
I don’t know whereabouts you are in the country, obviously – but there are a number of “CMT-friendly” neurologists around the country, and depending on where you are, I do recommend getting a referral from your GP to one of these:
In Wales, (Cardiff) – Dr Gareth Llewellyn at University Hospital Wales
In Birmingham – Dr John Winer at QE Hospital
In Manchester – Dr Mark Roberts, Salford Royal Hospital, or Withington Community Hospital
In Liverpool – Dr Bryan Lecky at the Walton Centre
In Oxford – Dr David Hilton-Jones, at the John Radcliffe Infirmary
In Bristol – Dr Ormerod at Southmead Hospital
In Southampton – Dr Haider Katifi, at Southampton General Hospital
Dear Martin
Many thanks for explaining to me all the problems that you’ve had over the years. I’m sorry that the NHS appears to have let you down in finding a solution to all these issues, which may or may not be CMT – I can’t say, obviously!
You do need to see a neurologist and see if this can get sorted out, once and for all.
I don’t know whereabouts you are in the country, obviously – but there are a number of “CMT-friendly” neurologists around the country, and depending on where you are, I do recommend getting a referral from your GP to one of these:
In Wales, (Cardiff) – Dr Gareth Llewellyn at University Hospital Wales
In Birmingham – Dr John Winer at QE Hospital
In Manchester – Dr Mark Roberts, Salford Royal Hospital, or Withington Community Hospital
In Liverpool – Dr Bryan Lecky at the Walton Centre
In Oxford – Dr David Hilton-Jones, at the John Radcliffe Infirmary
In Bristol – Dr Ormerod at Southmead Hospital
In Southampton – Dr Haider Katifi, at Southampton General Hospital
And the best of the best, Professor Mary Reilly at the National Hospital for Neurology, Queen Square, London – she is probably the UK’s leading expert on CMT, and even if you can’t get to see her in person, any of her team would be excellent – but her waiting list is incredibly long.
You could see any neurologist at your local hospital, but they may not be so clued up on CMT, and at this point, you really don’t need messing around any more, do you?
Hope this helps – I’ve also attached a couple of leaflets about CMT.
Regards
Karen
PS – the office will be closed from lunchtime today until Monday 7th January, so if there is anything else, I will answer when I get back in January. Hope you have a great Christmas and New Year.
"
Hi there
ReplyDeleteThe NHS is corrupt having worked in it for 33yrs and then betrayed by them wish I tried to claim for an injury to my back L/4/5S1 which has now caused me CRPS II HEAVY UNPROTECTED LIFTING AND A FALL DOWN A FLIGHT OF WET STAIRS in1984. I claimed the NHS INJURY Benefit.. they have said that my injury was attributed to my past job but not the extent..It was wholly as a result of my job I provided evidence they ignored it ! I took it as far as the Ombudsman she lied too... after 4 years of fighting...disgraceful. They betrayed me so they wont worry about betraying the patients.. I should have sued them back in 1984. But being the good person I am I did not and kept working PART-TIME.. UNTIL 2009 THEN WAS FORCED TO RETIRE OUT NOW i HAVE TO FIGHT THE DWP for A Benefit.
I have been referred to Dr Katifi at SGH.. I have asked for Nerve conduction studies..Have had an MRI but they culled that FILM as it was evidence of my past injuries..also documentary evidence back in 1984 and the Social Security as it was then.I ask for the copy and they said it had been culled as well so all corrupt..Any injuries you sustain always keep copies of evidence of medical notes ..and photos.
ReplyDeleteHey there, sorry only just now noticed your comment. My word, these blogs are run by the biggest names and they only have to deal with text, you think they would get it right wouldn't you?! Lol!
ReplyDeleteI have issues with both Android and Blogger, both Google, when it comes to posting and formatting. When I use their own App to post from an Android device the Android English dictionary, Christ alone knows where they get their English words from, thinks all vowels are stand alone words. It ignores the very first letter I touch in a word and then changes it for something that often does not make sense in the sentence and sometimes not in the english dictionary! Well not the OXFORD Enfglish dictionary, lol.
The there is the Blogger App itself which does not put in proper formatting, thought it look OK when I post it, it then subsequently removes the formatting, like spaces between paragraphs for instance. It then loses all my labels, well TAGS really but Google think they own ther Internet now so want to change it to their wording, lol.
Yes I am afraid they are corrupt but then I knew this for a very long time...
Unlike many other people, but then I am somewhat...different from most others, I decided to just lead them on and bide my time. Acted like a mere digruntled average public member, with the theiry that they have the qattitude that the public are all thick. I led them on collecting together everything I could along the way which eventually, arguably inevitibly, included audio and video.
Then once I knew I had enough audio and video together, believe me when I doubt that what I have posted, which is a lot I am sure most would agree, I doubt it is 25% of everything I have. In fact I started estimating when it got around 50GB and then I stopped estimating around 100GB. I really and truly lost track.
But yes that it why I kept everything. In fact after going missing for about a year my records have turned up at my new GP, compare that for failing to turn up at my last GP at ALL! Lol. Was registered there about 7 months in all and they never even gopt to see them. Yeah that parts not quite over as there is no way they have been missing that long without some....tomfooolery, lol.
My own records do actually go back to at least 2003 and I am certain there are some earlier than this. That is just the NHS and my records actually go back to around...hmm need to think a moment, damned Fibrofog which reminds me I did diagnose myself in the end and correctly so. I then had to just place Doctors in a corner to send me to the specilaists, at Guy's Hospital. Of course I knew damn well that this had been going on for so long that they would attempt a cover up to prevent them look incompetent or obviously knowing about my condition for sometime and lying about it under orders from a higher authority? Of course they would suspect that I knew this and after the appointment there as a pregnant pause. If you read the posts after this Guy's Hospital appointment you wikll see I mention it a great deal but I fail to make any references to recording the appointment. In fact I insinuate quite the opposite! This was to lead them into a false sense of security and...intercept or get Dr Kirkham at Guy's Hospital to alter what I was told would be put in the letter.
They could not delay forever as regards sending out the letter so I simply had to wait. It helped by going into my GP and statiung what they told me. This would help lead them into a comfortable zone so that when the cards were on the table I could wipe the floor with them.
Of course when they realised this was going to happen, probably should have held off posting it on here, the GP got a phone-call to say I was recording our appoitnments. Lol, this was the really incompetent side of it, especially when you point it out to the GP your nailing to the wall and he sighs like your an idiot and mistaken and tries to tell me that it was I that told him what I was doing?!
That was....hilarious!