Aa
I've complained to Pals
I haven't been around too much, I've had so much going on. I've been in limbo now for twelve years. I was with an MS Specialist for four of those years. I showed optic atrophy on MRI, but not lesions. However after four years and progressive leg problems due to spasticity he discharged me in 2005 and said they knew something was wrong, but they couldn't identify it.
I gave up with the NHS for three years. I'd had to leave work in 98, I can't drive due to vision and I need a wheelchair outdoors. In 2008 I plucked up courage to get a thid opinion.
Neuro and her colleague examined me. She felt it was my thoracic spinal cord due to high level of spasticity. Her opinion was progressive MS, or a rarer progressive form of NMO. She was shocked that in ten years of tests I'd never had my spinal cord mri'd below my neck.
A neurophysiologist became interested in my case and wanted to try a test called transmag. I had the cortical area of my brain tested last march. He decided he wanted to trans mag my spine with motor evoked potentials. After this I was suppose to being referred back to the teaching hospital where I was with an ms specialist.
A year has gone by and I still haven't had this test. I saw my neuro and she was very evasive, but I do know that it is used for a lot of research. My Dad had bilateral optic neuritis and mild gait difficulties. She was referring me back to teaching hospital to look for ms like disorders, especially leber's hereditary optic neuropathy.
At my first appointment two years ago her colleague noticed sustained clonus and ataxia. She tld him it wasn't ataxia it was the clonus making me walk that way. The last two letters she has written to my GP she has called it ataxia.
Anyway she decided she wanted more mri's before I was being referred back to teaching hospital. I received a copy of the letter she sent to my GP. She has referred me to a colleague at her hospital and they will both decide if I need referring on. This wasn't even disscussed with me at my appointment. She then went on about ataxia and said it looked functional.
I wrote to her explaining I've been taking 80mgs of baclofen for ten years and I know when I have clonus. I also explained I thought mri's would be a waste of time . I haven't received a reply to my letter.
My family talked me into going for the mri's in a portable truck. They were running 35 minutes late and the stress with all the limbo I pressed the emergency button and had to be pulled out. I've had six mri's before and got through it.
Family said no other patients in another medical field would put up with this. Having to wait a year for a test and then given no explanation and still not getting it. Contradicitions in notes and referrals to another Dr not being disscussed with me.
I've made a complaint to PALS. This could be detrimental to me, but enough is enough. I'm being investigated for swallowing problems as I've lost two stones and at times having to manually evacuate my bowels. I'm not getting physio .
I felt if I didn't start to make a stand and complain nothing will get done and nothing will change. I know people are afraid to complain about neurology, but after twelve years of it and seeing and hearing some dreadful stories I'd had enough.
I gave up with the NHS for three years. I'd had to leave work in 98, I can't drive due to vision and I need a wheelchair outdoors. In 2008 I plucked up courage to get a thid opinion.
Neuro and her colleague examined me. She felt it was my thoracic spinal cord due to high level of spasticity. Her opinion was progressive MS, or a rarer progressive form of NMO. She was shocked that in ten years of tests I'd never had my spinal cord mri'd below my neck.
A neurophysiologist became interested in my case and wanted to try a test called transmag. I had the cortical area of my brain tested last march. He decided he wanted to trans mag my spine with motor evoked potentials. After this I was suppose to being referred back to the teaching hospital where I was with an ms specialist.
A year has gone by and I still haven't had this test. I saw my neuro and she was very evasive, but I do know that it is used for a lot of research. My Dad had bilateral optic neuritis and mild gait difficulties. She was referring me back to teaching hospital to look for ms like disorders, especially leber's hereditary optic neuropathy.
At my first appointment two years ago her colleague noticed sustained clonus and ataxia. She tld him it wasn't ataxia it was the clonus making me walk that way. The last two letters she has written to my GP she has called it ataxia.
Anyway she decided she wanted more mri's before I was being referred back to teaching hospital. I received a copy of the letter she sent to my GP. She has referred me to a colleague at her hospital and they will both decide if I need referring on. This wasn't even disscussed with me at my appointment. She then went on about ataxia and said it looked functional.
I wrote to her explaining I've been taking 80mgs of baclofen for ten years and I know when I have clonus. I also explained I thought mri's would be a waste of time . I haven't received a reply to my letter.
My family talked me into going for the mri's in a portable truck. They were running 35 minutes late and the stress with all the limbo I pressed the emergency button and had to be pulled out. I've had six mri's before and got through it.
Family said no other patients in another medical field would put up with this. Having to wait a year for a test and then given no explanation and still not getting it. Contradicitions in notes and referrals to another Dr not being disscussed with me.
I've made a complaint to PALS. This could be detrimental to me, but enough is enough. I'm being investigated for swallowing problems as I've lost two stones and at times having to manually evacuate my bowels. I'm not getting physio .
I felt if I didn't start to make a stand and complain nothing will get done and nothing will change. I know people are afraid to complain about neurology, but after twelve years of it and seeing and hearing some dreadful stories I'd had enough.
Hi lulu I am glad you came and read that post.
I think it is a gender problem in the NHS.
For example my husband is a smoker and drinker and has chronic bronchitis and he gets treated with lots of love and kisses when he goes to the surgery I kid you not. I look after myself dont smoke or drink and I see that look in the GP eye when I go to see her.
I got an even better insight in to it as well when I was quite poorly about 4 months ago and had a home visit the first thing the GP said was HOW WAS MY HUSBAND LOL. I KID YOU NOT.
Another lost soul on here SILKCUT well her story with the NHS reads like a Freddy Kruger plot.
I am convinced it is gender and age related in the NHS. Perhaps it is time we rallied and joined together and got the banners out LOL.
Its DISGUSTING the way we are treated.......we treat dogs better in this country.
I think it is a gender problem in the NHS.
For example my husband is a smoker and drinker and has chronic bronchitis and he gets treated with lots of love and kisses when he goes to the surgery I kid you not. I look after myself dont smoke or drink and I see that look in the GP eye when I go to see her.
I got an even better insight in to it as well when I was quite poorly about 4 months ago and had a home visit the first thing the GP said was HOW WAS MY HUSBAND LOL. I KID YOU NOT.
Another lost soul on here SILKCUT well her story with the NHS reads like a Freddy Kruger plot.
I am convinced it is gender and age related in the NHS. Perhaps it is time we rallied and joined together and got the banners out LOL.
Its DISGUSTING the way we are treated.......we treat dogs better in this country.
Greetings. Mrs. Aristotle invited me to stop over from the MS forum and read your horror tale with the NHS. Let me say how sorry I am that anyone has to go through this type of treatment. The condition of the NHS, its treatment of neurology patients and especially female ones is the stuff horror movies are made of. I wish you could slip across the water and go to France and be checked out or even come across the pond to use our MRI machines.
I am dumbfounded at how often I hear these tales out of UK. It disgusts me and everyone else here.
Obviously there comes a time when you have to say enough - being compliant with their plans and treatments (or non-treatment) isn't working. Good luck with trying to get some attention. Don't give up trying for answers, ok?
my best to all of you in Limbo,
Lulu
I am dumbfounded at how often I hear these tales out of UK. It disgusts me and everyone else here.
Obviously there comes a time when you have to say enough - being compliant with their plans and treatments (or non-treatment) isn't working. Good luck with trying to get some attention. Don't give up trying for answers, ok?
my best to all of you in Limbo,
Lulu
Hi you know my thoughts on all this they are unprintable we have been through this journey together for 3 years and I have worried about your worsening condition..........its ridiculous the way you have been treated. Big hugs Mariaxxxx
Hi AA
Good grief. 12 years is utterly intolerable and , to my mind, despicable.
It's absolutely no help or consolation, but a close family member of mine was in this sort of limboland for 15yrs. And now, I've been caught up in this circle of hell that is called the NHS. Then there's Maria of course whose trials have been ongoing for years too.
I'm so disappointed to say that this is actually common, and there is nothing you can do but complain or wait and wait and wait and wait...
This is partly because there's been a very minimal neurology service throughout the UK for years. I've been for an MRI in a truck in some car park too - and that's at one of the 'top' neuro and stroke hospitals in the country. Unbelieveable isn't it?
I made the mistake of complaining about rudeness of doctors and their wallying about...because I just wanted to get well and back to work asap. That's normal and healthy, right?
But not in NHS-world. They are profoundly sexist to my mind. They seem to think that any woman would jump at the chance of giving up work and being a kept woman.
Sorry - a rant in progress there.
My experience of PALS is that the women there are very good at empathising and being supportive, they understand what's going on, and they know more than they let on. They can be very helpful with tweaking and finding out small bits of information.
I'm a bit confused though, because PALS isn't the complaints process. Are they helping you to make a formal complaint? Either way, my experience is that the complaints process does nothing positive at all. The Patients' Association did some research on this system and Claire Rayner wrote in the report that 'The NHS complaints system is a cumbersome failure'. You're right, people are afraid to complain.
But I want to say well done for taking a stand...really. We need to stop being so afraid and cowed by dictatorial doctors and a health system (to which your screen name no doubt refers?!! ;-) that doesn't really care about people's health.
What do the PALS people advise?
hugs
samxx
Good grief. 12 years is utterly intolerable and , to my mind, despicable.
It's absolutely no help or consolation, but a close family member of mine was in this sort of limboland for 15yrs. And now, I've been caught up in this circle of hell that is called the NHS. Then there's Maria of course whose trials have been ongoing for years too.
I'm so disappointed to say that this is actually common, and there is nothing you can do but complain or wait and wait and wait and wait...
This is partly because there's been a very minimal neurology service throughout the UK for years. I've been for an MRI in a truck in some car park too - and that's at one of the 'top' neuro and stroke hospitals in the country. Unbelieveable isn't it?
I made the mistake of complaining about rudeness of doctors and their wallying about...because I just wanted to get well and back to work asap. That's normal and healthy, right?
But not in NHS-world. They are profoundly sexist to my mind. They seem to think that any woman would jump at the chance of giving up work and being a kept woman.
Sorry - a rant in progress there.
My experience of PALS is that the women there are very good at empathising and being supportive, they understand what's going on, and they know more than they let on. They can be very helpful with tweaking and finding out small bits of information.
I'm a bit confused though, because PALS isn't the complaints process. Are they helping you to make a formal complaint? Either way, my experience is that the complaints process does nothing positive at all. The Patients' Association did some research on this system and Claire Rayner wrote in the report that 'The NHS complaints system is a cumbersome failure'. You're right, people are afraid to complain.
But I want to say well done for taking a stand...really. We need to stop being so afraid and cowed by dictatorial doctors and a health system (to which your screen name no doubt refers?!! ;-) that doesn't really care about people's health.
What do the PALS people advise?
hugs
samxx
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