Abandoned!

New diagnosis and before diagnosis
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Don’t they make it difficult and stressful when testing and diagnosing for MS! Sorry for the long post but it’s has been a long year!

Two years ago I started to become unwell loosing my balance, falling left all the time and many other symptoms. I went to the dr and was told it will pass and to come back if it doesn’t. It never did pass but more and more symptoms appeared such as bladder and bowel issues, terrible crushing around my rib cage and front that I didn’t sleep in my bed for 3 months then numbness in my finger ends and well many other things I am sure you all know well!

I returned back to be told I had stress, my other half laughed at this because I am so laid back but I trusted the drs and carried on in my non stressed world.

then in July of last year I was out walking my dog and my legs just went so heavy I had to call someone to take me home and since that day it’s all been downhill. I can’t drive my car as I drive into the ditch, if someone walks past me I wobble and fall over and have lost my taste, have electric shocks down my neck and a numb tongue! So again I returned to the dr and finally referred to a neurologist. I can’t even drink a coffee without throwing it at myself!

I waited from July to November to travel the 3 hours to see him after I had been forgotten on the system and had to call to chase, he was lovely told me my reflexes were off on one side, I had muscle tremors and twitches by then which he confirmed and positive Hoffmann, rombergs and the babinski. He told me that he suspected Ms with it being in my siblings too and sent me for a scan.

I waited until the December for the scan then was told in two weeks I would be called back for my results. Nothing came so my gp chased and was told that the brain scan was fine but the spine has lesions on and the neurologist was asking advice from a further specialist.

march came and nothing so I went to the go again who told me to call the neurology department. I called and spoke to the secretary who rudely told me that the gp had the results and I have heard them, which I pointed out that I was waiting for him to speak to the specialist. I asked her when would I go back to the neurologist for my next appointment and she plainly told me that I have been discharged and there are no intentions to bring me back.

and that’s that! I’ve been off work for a year waiting results and I have sat for the last 3 months waiting for that appointment letter to come through the door which I now find out was never coming! When was they going to tell me this? I’m 34 and try to run a business which isn’t working like this And I have not sat on my horse in a year and pay someone to walk my dog so I’m pretty devastated just to be written off into a filing cabinet and abandoned! I used to be very active and sporty and now it’s a big task to go to the end of the road or put my own socks on!

has this happened to anyone else and did you then chase to go back and see them or just accept that this is life now and get on with it. I’m scared to go back as I guess I’m wasting his time and feel stupid!

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Hi, oh I get so damned cross when folk are discharged from their neuro, when they obviously need follow up appointments. So, your neuro said he suspected MS…and then what ??? for chuff sake!

You need to know which type of MS you have, as there are meds to slow attacks/disability and to help manage symptoms.

I`m afraid you will have to see your GP about this again. I think he/she will agree that you need another appointment with the neuro…or better still, a different neuro.

pollxx

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This is what has just floored me, I can completely understand how hard it is to diagnose and they wouldn’t just diagnose without the correct criteria or anything else for that matter but I have been sat waiting for months for an appointment that didn’t even exist!

i just feel like they have crossed my paper work, put me in a filing cabinet and that’s me cured.

the neurologist suspected MS but when he found I only have lesions in the spine not brain he wrote to the gp that he was asking advice to another neurologist before bringing me back. He made it fairly clear to the Dr he didn’t suspect MS without the brain lesions so I was expecting to go back and talk to him again to find out his thoughts and if and what to do next.

so yes very shocked just to be told by the secretary that I’ve been discharged and I was sat waiting for nothing like an idiot! On asking my gp what next as I’m still not bouncing around and back at work or running my business she said well I would wait a year or so and if things carry on come back and I can refer you again but it will be a long wait like before.

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These incidents of being discharged and poor treatment by secretaries really winds me up. Politeness costs nothing and they must understand that short term inconvenience could save significant anguish and tangible NHS resources in the longer term. There seems to be a shortage of Neurology resources and limited understanding of MS and how to consider the PEOPLE who are unwell.

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It’s very true, you would think a bit of understanding would be a job requirement! I live in the far north of Scotland and already travel a 7 hour round trip to the hospital and sadly the neurologist is the only neurologist that covers all hospitals up here for another 5-6 hours so I’m guessing a second opinion isn’t going to happen, although I do trust in what he is saying and don’t doubt they cannot diagnose anything as yet but it is more the discharge without even seeing me back so I’ve met him once in the two years and the latest last November!

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did you see an ms specialist neuro?

if not, see your gp and ask to be referred to one.

if you are fairly close to a city, there should be one there.

as for that rude secretary, karma will get her in the end.

good luck

carole x

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Hi

I was going to ask if you are NHS Highland, but I can see you are. I’m going through similar with them, although thankfully I only have a 30 min trip to Inverness. My symptoms are no way near as bad as yours, and have mostly eased off again. I normally have around 6 weeks of symptoms a year, last year was worse though, with 4 months of nastiness and some new symptoms too. MS is only a vague possibility for me. I’m on this site because it’s friendly enough to hold out its had to anyone one with undiagnosed neurological symptoms.

In my case my GP, the neurologist and his secretary (who I’ve only spoken to once) have been lovely, but the service/culture surrounding them is unbelievably crap. The only communication I’ve had from the hospital have been the appointment letter for the neuro (November) and the appointment letter from the radiology department (urgent MRI, which I had to wait until January for). No results, no updates.

I have to keep hassling my GP to see if they’ve heard anything. It was my GP who gave me the neuro secretaries phone number. I rang in February. The secretary initially told me that I’d been discharged as I wasn’t on the waiting list, but I expressed surprise at this, so she went to get my records and discovered that the neuro wanted to take my MRI to a meeting for discussion with colleagues, and that I’d been referred for nerve conduction tests. I’ve still had no official word about the referral, and nothing back about the MRI, which I’m taking as a good sign.

There’s definitely more than one neurologist there. I had my appointment on a Sunday, and I can’t believe he’d be working on a Sunday, if there wasn’t someone else doing week days.

I’ve also been abandoned by the physio service. Referral was in November, but still no appointment. GP has also sent them a stinking letter about their service. I can walk again now, and no longer need a walking stick from them, but would love some input from them as how to access one when I need one (weak arm muscles made a walking pole really painful and difficult to use).

They really know how to make you feel utterly alone in Highland region! I really feel like my life is regarded as being less important than those who live elsewhere. The message from the neurology department is very much that the patient isn’t important, and can’t be considered intelligent enough to included in the decision making process. It is utterly different to my experiences of the paediatrics department, who I regularly have contact with for my daughter. They have a completely inclusive policy, and I get included in all the communications between themselves and the GP.

Oops, that turned into a much longer winge than I’d intended, but it feels good to have let it out!

Take care

Paula

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This must be an NHS Scotland thing- I live in the central belt and this is also happening to me!

had lumbar puncture in January- said results would be 3 weeks. Waited 6, herd nothing. Phoned secretary,she said she didn’t have them, but gave me the number for the hospital that I had them done at. Phoned them. They said they had them and they would send them immediately to my neuro. Phoned her back a few hours later, she had them, couldn’t give them to me, but had sent them to gp who could. Phoned GP, ‘no action, but discuss with GP if you want’, app made for 10 days later. Attend appointment, no action was NOT what the results were- they were positive for O bands. GP refuses to discuss with me. Phone neuro secretary, she gets neuro to phone me the next day, so we have a brief discussion, says he will send me for another MRI. STILL have had none of this in writing or any written confirmation of what my lumbar puncture results are!

its like they don’t realise we’re real people and this might affect our lives!!

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Hey Paula,

One potential solution might be to try and get a national mobile unit / team. If there could be a truck with rooms and staffed by experts or specialists. It could bring support to those who can not travel easily.

Mick

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Sometimes I feel we are considered “cases” or boxes to be ticked. I guess this is a result of meagre resources and focus on paperwork and box ticking. I would feel better if I did not feel rushed in my appointments.

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Apparently we don’t have an MS specialist up here just an MS nurse who you can see once diagnosed but my gp says because the brain scan is clean it certainly isn’t MS so she doesn’t know what the next step would be other than wait and see if it gets worst and start the process again. That’s fine but when you’re on the edge of loosing all income you have and wondering who will feed you it’s not that simple! Just very frustrating when you’re already feeling horrific and wondering why you’re life has changed so much to have to put up a fight to get answers.

i might try phoning the rude lady again and make sure!

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Oh no! Not you too, I’m so sorry you’re in the same situation! I put all my trust in them to at least communicate even if they couldn’t help in any way so feel so abandoned by them. They told me when I first went that after the scan regardless i would have the lumber puncture at least so I’ve just sat waiting thinking this was normal to sit and wait so I’m glad I did phone or I’d have been here waiting until I’m 93

raigmore were amazing when I had an accident years ago and hurt my leg, I was in within days and saw a great man who got me in for the operation in days too, he would see me monthly after this no fail until he knew I was recovered and then put me to my gp and physio without any bother, just nice and smooth and stress free!

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That’s awful, it’s just shocking when you’re at your lowest you trust to be counted and remembered!

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I do feel like a tick box, almost like now I’ve had the tick and discharged that I will in a great miracle be ok tomorrow and go away!

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It’s madness isn’t it? How can you discuss it with the GP, when they are not a specialist in neurology? I have friends who are consultants in our hospital, and none of them would treat a patient like this. The patient is everything for them. I’m wondering if neurologists hold themselves above everyone else!

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Know what you mean about tick boxes.

Funding is also a huge problem, but I’ve had dealings with paediatrics, the maternity unit, and A&E all at the same unit, and I’ve never come across this attitude before, and I’m sure funding is difficult for all of them.

There is a patient’s charter of rights, and one of them is the right to be informed, and involved in decisions, about health care and services. Think I’m going to have a chat with my GP about this next week.

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OMG what a load of trollop your GP and neuro are talking. So if you dont have lesions in your brain but only in your spine you cant have MS…WRONG…thats garbage, and your specialists need to get back to school.

The lesions caused by multiple sclerosis can occur anywhere within the central nervous system which includes the brain, the spinal cord, and the optic nerves. Approximately 55-75 percent of patients with MS will have spinal cord lesions at some time during the course of their disease. If a patient does have lesions in the spinal cord, he/she may be said to have Spinal MS. A smaller number of MS patients, approximately 20%, may have only spinal lesions and not brain lesions.

I have spinal lesions.

One of my first symptoms was walking towards the right when i was at work, and banging myself on a row of filing cabinets lol, my PA said to me one day are you drunk lol…Bang, bang, bang, like the floor was off tilter.

Anyway you need to get proactive this is ridiculous. You can have silent brain lesions.

I am sending you a link via private message as I am not sure i can put it on here. Its from a lady who has spinal MS and explains it very well.

My neuro told me the other day. A lot of people young present with brain lesion MS, and it affects the way they speak, and upper motor nurone issues. But as you get older some people like myself present it mainly in the spine. HOWEVER, when i had my very first paid for MRI of the head it clearly said there where lots of high signal foci in the deep matter of my brain, which could have been demylinating, but the radiologist put it down to my age. Since that MRI in 2006, i havent had another brain MRI only spinal.

So I would move lol, as your neurologist is frankly talking a load of rubbish. xxxx

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“GP refuses to discuss with me.” That is crazy, if they won’t talk to a patient it sounds to me like grounds to complain. Jump up and down (figuratively) hint at talking to the press, GMC, social media or your MP. If you make it less of an inconvenience to speak with you the just might.

Good luck

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I’m with North-West England and, there is a massive deficit in the services available and what is actually needed. It appears to me that there are (huge) specific failings within certain areas of the NHS. I’m guessing for Scotland / the Highlands it’s a geographical thing - not good enough. Some people will hate me for saying this but I was told, off-the-record, our local problem was partly due to the influx of… how do I say this?.. immigrants needing medical help. Before I get any wild accusations - I’m half Welsh, half English and (thanks to my Army parents), I was born in Dusseldorf, Germany. As my last name is originally Scottish - it’s impossible for me to be a xenophobe with my genetics!

Just saying!

Amanda.x

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Is anyone looking into these national failings?

A.x