31 years and now a major relapse so be told I have to wait 12 months to see a neurologist
I am 54. "When I was 23 I had my first symptoms. Back then the tests were not as good as nowadays. I had MRIs/and one lumbar puncture with no positive results…
after 8 years of being treated like it was in my head for my mental well being I disengaged with the NHS re my neurological condition and managed it myself. I researched best ways to eat sleep exercise rest and did them.
This year however (31 years on) 2 months ago my symptoms change radically and I am now only able to walk with spasticity ( even after having baclofen) in the house and have to use an electric chair outside.
There are quite a few people I have spoken with who have not been diagnosed til years later and as such have missed their opportunity to have DMDs.
Waiting a year is nothing compared to waiting 20 plus and many people I know because of the lack of tech and attitude of neurologists/GPs were treated badly.
So I struggle to read when people have private MRIs which I can’t afford and I am struggling to swallow at night, wet myself, can’t walk without spasticity etc… and have been told I have to wait a year just to see a neurologist.
In fact 2 months ago when I relapsed I was taken to A and E with a suspected heart attack ( but was intercostal spasms) the consultant there - when I said but what is the pain in my back said he didn’t know and he was sending me straight back home ( even though I could only walk with two people holding me up - I had left my electric wheelchair at home ) because and I quote his words " you are not dying" .
So I just wanted to reach out to other people who like me, have been unwell for years and years, and now still are having to wait behind other people who pay to jump the NHS queue.
You are not alone. I believe it is not right or fair that some people can afford to get private MRIs and then jump ahead of you but it is what it is. And if you are someone who is doing it that is up to you, I mean no offence, but this post is not for your benefit but for mine and others like me to not feel so alone.
Yes it’s not a fair system and I would never have bought Private Health Insurance , however , it was part of my employee benefits.
After not being listened to by my GP for over a year and being dismissed as having anxiety and depression my GP said he wouldn’t refer me for an MRI on the NHS.
I suspected I may have MS , a brain tumour , and/or early onset dementia. I was going out of my mind and heading for a breakdown.
At this stage knowing something was definitely seriously wrong with me I felt I had no choice other than to get an MRI privately.
Low and behold I’ve been diagnosed with MS.
I didn’t jump the NHS queue as I was never on it in the first place.
Everyones circumstances are different and the road to diagnosis is rarely straightforward.
I hope you get the help and the answers you need as soon as possible .
I’m sorry to read your story and I’m sorry you can’t afford private no one should face that alternative and it happens too often.
I’ve waited patiently and gone through the system and after two years been offered no reasonable explanation to my results or symptoms in-fact from reading other people’s stories I have a good case to have been diagnosed by now. So am I going to see a private dr for a second opinion/desperate plea for help? Yes I am! Can I afford it? Hell no but I’ll sell my left kidney to find the money.
Not every situation is as plain as you put it. If I had a decent job and could afford private care then I probably would. The question we should all be asking is why is the state or the NHS so bad that people feel like they can’t trust it anymore.
I think it’s way past time that the UK came up with a clear plan for health care in the UK. We muddle along with an under resourced national health service along with private care for those who can afford it. The bonkers thing is that in the main the private service uses staff who also work for the NHS! Without a lot more staff and money in the system there will be an increasing number of problems and it’s the patients who suffer. Someone needs the strength and intelligence to come up with arrangements that meet the needs of the UK
Sorry to hear NHS waits getting you down; I’m in the same boat awaiting elective surgery for sumat not directly linked to multiple sclerosis, but almost.
You had your first MS episode 31 years ago, again a bit like me 24 years ago; fortunately for me it got better on its own and went away --Neurologist back then simply put in his letter, probable multiple sclerosis.
Tbh b4 MRI, how were MSers even diagnosed?
Yes the LP is a reliable indicator, MSers have high T-cells in their spinal fluid so that’s one way to dx I suppose.
I think you eventually get the knack of knowing it’s a heavy relapse and from past experience, when I feel the need to visit A&E, I always stress I’m having a really bad MS relapse and please can you prescribe me prednisolone steroid as I cannot cope any longer --I find it helps us all tbf, then they give the neuro evaluation once over, cutting thru all the questioning and boom I’m sorted.
Wishing you all the best health wise,
JP
So just for quick coverage of my particular circumstances, I’m Danish but live in Japan, and there is essentially only private care here as far as I have been able to find. My job then has insurance which we have to pay into, and that puts a max on medical fees of a little more than a quarter of my monthly wages after tax etc. Which is essentially one month’s stock of Gilenya.
I have been nagged and pushed by my Danish family to get the hell back to Denmark and let a “proper” healthcare system take “proper” care of me. From my impression in the news and reading around a bit though, it is essentially as what you describe. Long waits, the right care/treatment/diagnosis not happening or happening very late, etc. From your story as well, it’s quite frankly terrifying. But somehow those with only very little or no experience in the system can get horrifyingly defensive when presented with potential criticism to what they might perceive as a wonderful welfare system. I find it is rather hard to talk about at all in fact. So it is very refreshing to see you write like this!
I am I suppose in the [paying for the private treatment] since Japan has no alternative, but I hear and read many many similar stories from individuals who are similarly struggling all by themselves. So as you say indeed, to anyone else, you are not alone. We can only hope that eventually the combined voices of those suffering will be loud enough for the care balance to flip a bit more in our favour I guess.
Having personally only had the Japanese experience where everything went extremely fast due to well the power of money I imagine, I now find myself anxious and unable to cope very well from a mere 3 weeks wait on my next MRI during what feels like an attack or relapse. Oh how spoiled I have become indeed. My heart goes out to you.
I do not vote Tory x In my mind they are ruining the NHS on purpose to make people go private. This government has violated human rights and when they were told they had their response was - no we haven’t. so very sad.
Hi Driath. Thank you so much for your kindness. Honestly in the last 2 weeks I have suffered because the meds I have been put on by the GPs were not explained properly to me. I went into two different crisis. I will be complaining in the new year. One where I was told to come off baclofen ( an anti spasmodic) resulting in horrendous intercostal spasms ( pain level 9/10) and one even more severe where I took baclofen and diazepam as directed by a GP interfering with my breathing. I was too scared to contact anyone because I have been treated so poorly in the past it wasn’t worth the stress for me. I looked it up afterwards and my nervous system had been supressed so badly it had affected my breathing. So I am not talking just fed up waiting … I am now talking being treated dangerously by GPs who mean well but they are not neurologists. Like I said I will bring it up in the new year. My spasms are so bad they take me off my feet. My swallowing is bad and I choke at night sometimes waking me up. It is poor. And I am going to start kicking up in the new year. However I also live 100 mile round trip from a hospital. They closed the local hospital that did satalite consultations. So that will be interesting as I am too unwell to travel anywhere. What should have happened is when I went into hospital last they did the tests then. But as …and I quote again ‘I was not dying’ I was sent home… it is unbelievable
All the best … I don’t really agree with some people getting better treatment than others. I think most people who are unwell understand the stress of waiting for help. So I don’t feel anti anyone. I just feel miffed people are paying private for an MRI and then, with lesser symptoms, jump the NHS queue for a consultation.
All the best in your M S journey
oh yes…meant to say also… there are plenty of the ‘defenders of the NHS’ or who believe the Tory government really believe in the phrase they coined ‘we are all in this together’… lol … but usually they have not suffered at the hands of it . I am sad people within the NHS are not kicking up more when they see people in their care are not being cared for well enough.
I am sorry you have gone through the system and after two years been offered no reasonable explanation. There is a diagnostic tool they have to use in order to diagnose. I don’t obviously know your history but M S takes time often to diagnose because certain criteria have to be fulfilled. Diagnosing Multiple Sclerosis | National MS Society. It may be they have been unable to find the evidence to meet the criteria. I think it is a real shame the neurologists do not explain this more clearly. I listened to a professor explaining the need for having the history/having symptoms that correspond with findings on examination/having lesions on an MRI that line up with these findings/then using a lumbar puncture as a back up … but the bottom line is if a neurologist can not meet the criteria then they can not diagnose you as having M S regardless of if we think we have the same symptoms as others. They have to rule out other conditions but also they have to find the criteria for MS.
Everyone’s experience if they are having unexplained neurological symptoms is scary. For me it is plain. Paying for an MRI to jump an NHS queue when others are waiting is not fair. That is my opinion. My experience. You are talking about getting a second opinion and paying for it. That’s up to you. This post, as I said, is for those like me. I think you are saying you are not like me. I hope you get the help you need. Emma
MRIs were only just starting when I was first ill. I won’t go into my history but I already feel seriously let down by the system prior to the lengthy waiting lists. I am sorry you are waiting for elective surgery. I am in a position where I am being treated by GPs for something that a neurologist should be dealing with. I feel on 2 occasions this has resulted in damaging my wellbeing. I will be complaining in the new year ( although I am not sure yet simply because I still need to be treated by someone and the GP is all I have at the moment ) I am unable to stress anything when I go into hospital because I have no diagnosis. May I wish you all the best. The sad thing is if I have MS. It is likely to be secondary. And if it is active at the moment so could be treated by the DMD it won’t be seen to possibly too late. My ability to walk is being affected. This last episode has been 3 months. So it is a relapse. But I am in the position of not being able to say that because I have no diagnosis…aghhhhhh… lol and breath…
All the Best
Emma
totally agree. I understand people just want to get the help they need. I feel the responsibility is on the government/NHS to sort out an NHS that is safe. I am currently on meds given to me by GPs … one GP said to me really a neurologist should be doing this. I have had two major crisis because of lack of ‘communication’ of how to take meds. I am still deciding if I should make a formal complaint… But when you don’t feel well you do not need to be falling out with your health care provider
Hi there,
I am talking about people who pay for a private MRI and then are referred back to the NHS for consultation and then treatment. In my mind this is unfair when you are very unwell and others jump the queue in this manner. I don’t really have an opinion worth sharing on private v NHS. I am glad for you a diagnosis was made quickly and you are presumably on DMDs already. That will be of help for final outcome. For me I took the view although I am very unwell the NHS must have a way they order intake for consultation and I need to trust that.
thank you for responding to my post. I hope you are responding well to treatment.
Kindest Regards
Emma
Honestly feeling a little bad reading so many horrible experiences and troubles here, and then myself being so spoiled in this Japanese system at the moment. I fill my monthly payment quota just by paying for my medicine so my treatment is essentially free and that with now my 3rd mri in a month coming up this week.
I never thought I would feel grateful I left my welfare country and came to pay for everything land.
I feel so sorry to you all for your troubles. This illness is bad enough without such stuff. Thank god I got my diagnosis and treatment in less than 2 weeks.
Really hoping there’ll be little lights around you to brighten a day it all feels a bit much.
And don’t hold it in or anything. Even if it’s just here, come tell us the rubbish is rubbish and punch the waste paper basket around a bit. You’re not alone. Even at its worst, there are people here who’ll listen.
I desperately needed someone to talk to since I started MS and even more after I became a father, so I know keenly how immensely supportive even a little pat and a welcoming gesture can feel. Reach out.
