In the area we live we even lost our hospital and maternity services. Ladies in labour have to travel 3-4 hours to give birth now and our road gets closed on a regular basis so then they are on their own. It was taken to the government and they was told it is acceptable to drive that far even in bad weather while in labour. Funny however that the health secretary was due to visit to discuss it and cancelled due to it being unsafe to drive in the bad weather that day!
i really do feel that up here it is a case of they don’t matter but then I read others stories and I see really it is a nationwide issue that for us something terrifying to them is an every day appointment and we are brushed off. I will try not to lay down and give up and hope to get listened to!
Well on a return from the GP I now feel even worst about it all! She says that the neurologist says lesion on the cervical but the radiologist he consulted says its just signal from the mri and nothing causing any symptoms. I said to gp so what do I do now? Can I go back and talk to him again or have further tests to find out why I am like this and she bluntly said no because there is nothing wrong and the scan shows that. She gave me tablets for motion sickness and when I asked if I can have help with any of the toilet issues or tremours or walking or lack of taste and not able to feel hot or cold or the constant squeeze around my ribs keeping me awake she said " those are all purely coincidental" try these for a few weeks for your balance and if they don’t work I can just suggest trying to get on with it and working through it. Now feel utterly miserable and like my whole future had been completely written off
Oh, hugs your way. How can any of it be coincidental? That makes me so angry.
Now I’m typing this reply, I can’t see your other posts, and so can’t see your symptoms. I’m wondering why they are not testing for peripheral neuropathy. I’m just back from the GP too, and even though I failed to get to see the radiology report, I did get to see the last letter they’d had from Raigmore (a month ago!) stating that I’ve been passed on to the neurophysiology department for checking my peripheral nerves (plus that the fact that the neuro is unhappy with some of my spinal incidental findings and is investigating them further, whatever that means). All of my symptoms, ranging from balance and mobility issues, through to swallowing and hearing issues can be caused either by a central problem, or a peripheral problem. They do seem to be relying on the MRI as proof of it not being a central problem though, but at least I’m still in the system.
If your GP says that all your symptoms are coincidental, then surely she should be doing something about them individually. I can understand getting an ‘idiopathic’ diagnosis (my secret dread) or a ‘functional’ diagnosis, but no diagnosis makes no sense.
How many GPs at your practice? Is giving yourself a few weeks to compose yourself and then going back to a different GP and explaining how abandoned and scared you feel, an option? I’m lucky in that we have 5 GPs, and I’ll happily wait a couple of weeks not to get an appointment with ‘Dr Useless’ (my favourite Dr Useless quote is ‘There’s no point being diagnosed for something that can’t be cured.’). I think they sometimes forget that some of their patients are actually ill, and not just trying it on!
Thank you Paula I really appreciate your reply. It’s funny at first I was dreading the Ms diagnosis and so wanted them to tell me I have something simple and curable with a quick pill but not I almost feel worst because I still have the diagnoses that this will be no be cured and this is it for the rest of my life. I may as well be told I have something life long and life limiting because I am still having to give up on what is my life!
I hate being all dramatic and as someone that normally had to be dragged to a dr kicking and screaming like a baby it took a lot for me to go back again. I have questioned myself is this all in my head, am I imagining all of this like a crazy person but so did my sister when she was told the same things years back and she is now at the point of loosing eye sight and more drastic things but due to being tossed away too she won’t go back for help.
we have two GPs one who at my job in the nhs I saw her toss many people aside with no time for any of them and then this one im currently seeing.
i just really thought they would either test further or let me at least come in to talk to them again so I’m so upset.
my symptoms started with a squeezing pain in my ribs and chest area that lasted around 8 months with a tingling tongue and flickering eye and hand tremours. I put up with these thinking it would go away and even making the other half buy two new mattresses blaming them! Then fatigue to the point I couldn’t put a cup to my mouth and then the day it all came in a Big Bang when out walking the dog my legs went to jelly and I couldn’t stand up, called someone to take me home and I had double flicking vision and I kept falling over to the left, I couldn’t walk in a straight line and also kept tipping backwards. Lots of things crept in even slurred speech and going to talk to someone and garble came out. If someone walked past me it would send me into a weeble impression and I would just move and wobble on the spot unable to stand still or balance again.
this is the point I took to the dr and since then I’ve had many issues with all the above but also toilet issues bursting for the toilet every 10 mins or less and sometimes not making it and bowel issues ( horrid to say this out loud but I cannot pass a bowel movement without manually doing it)
i also have spasms in my muscles in that my ankles lock and almost pull against me and won’t hold me up and my body goes into a tense freeze for a few mins at a time.
i am just sick of not being able to wake up, go do my horse, go to my business and go to sleep, if only I could get this normal boring life back again!
Hi Millie, oh the old Arc/fault on the film rubbish lol, been there done that. I had to have a dye inhanced MRI and there was a clear bright lesion showing on it,and the radiologist told the neuro in his opinion it was an arc on the MRI film. Thankfully even though it took 10 years my neuro double checked it himself and spoke to a colleague and they actually disagreed with the radiologist.
The thing is too, it depends on the stength of the MRI they use to the accuracy, and the slice they take to where the lesion is. Its like saying oh yeh there are signals showing on the MRI but its just from the machine itself, so how confident would anyone be of having a proper result.
Its like my first brain MRI, there was a large area of high signal foci in the deep white matter of my brain, and to be told that although it could be demylinating, the radiologist felt it was more likely my age lol… You dont get aged high signal foci i the deep matter of your brain. Thats why i bought my notes.
You have to see another doctor about this, and ask for a second opinion. To say everything is coincidental is mad. The point is too 5% OF people who have MS dont have any lesions on their MRI show up.
So you have something, and now they are fobbing you off. I know they moan about our NHS in England, but i have to say i have never been denined an MRI, and my neuro has never given up on me, and my symptoms to start with were all vague.
The thing is too you are obviously not well, so what it is…you cant just chuck it out. OK take MS off the table for now, what else can it be? Its just not good enough, and i get sick of people being kept in limbo land all the time when its totally not necessary. x
That sounds like horrendous treatment! Is there another GP practice you could register with?
And surely they should be helping you deal with your other symptoms, even if they don’t believe they are connected to your balance! The tablets at least might help that, I take Arlevert when I’m having dizziness or vertigo, and they do help.
I hope you find a way to get some more sympathetic medical intervention.
I think he just didnt want to discuss anything that wasnt his specialism- he kept saying he couldnt discuss the results with me as i really needed to speak to my neurologist- just soooo frustrating! When i did speak to my neurologist he didnt say much either but did arrange for another MRI of my head (tomorrow) so fingers crossed in the coming month there are some answers to be had! My next neuro app is in May so by then at least i know i will see him again!
Exactly! If is not Ms what is it? If the tests for the ms are fine then at least help me sort out what ever it could be, it’s obviously not cured now they’ve told me it isn’t ms it doesn’t just go away. Maybe in ten years I’ll be on here with my diagnosis after living in a shed eating wood by then
Thank you, I id try to register with another practise but as I’m not in the 20 miles of them I’m not allowed, if this carries on I’ll be moving south again just to get another dr!
Hopefully these magic pills they have given me will at least stop me looking like I’m trying to grope everyone in the Supermarket by falling into them!
Oh Missmillie, i really feel for you! You seem to be in the exact same position as me. I have abnormal Mri but consultant said not Ms so i am discharged with no answers but i am still ill and seem to be getting worse. I started a thread asking if it could still possibly be Ms with normal Lp and Vep tests but dont think anybody really knows the answer to this so i just remain a medical mystery.
I actually also work for the nhs and having been off work for so long my work were giving up on me but today in a meeting I told them what’s happened and that are going to stand by me and help me fight too so here is hoping!
I am so sorry you’re also feeling this way and also left to it, far too many of us in this situation when a simple communication and bit of care could go a long way x
At my first appointment the neuro listed that I would have an mri, lumber and Evp but after the first test the Mri of the brain shows clear I have been discharged with no further tests so I’m surprised that’s it!
its fine to know the brain scan is clear but sadly doesn’t cure the symptoms knowing that so had hoped to have further tests to find explanations.
Thank you very much for your advice, I didn’t know until looking it up now I could even access my records so that’s a good start and will certainly be doing all you’ve recommended and hoping!
I have been given physiotherapy, continence advice (including equipment) and recently, and when side effects were making me really annoying to live with, a mental health contact.
I saw a neurologist yesterday. She had looked at my MRI scans, taken in November, together with a neuro-radiologist. My MS Nurse is first class as well.
I’m beginning to think I’m in a minority with so many professionals to fall back on. So many on this forum seem to be struggling to get the help that they need and deserve. I live in Surrey.
You’ve paid your NI contributions. Get anything you can find.
