The 2-3 months may have been ambitious. I’ve chased up PALs (the hospital booking service were rubbish) as I was told I should’ve received a letter by now but they told me it may not be until October. Meanwhile I’m suffering a flare up of symptoms. It’s so difficult and depressing waiting this long to even see someone. I first went to the GP about these problems at the start of 2021 but had suffered symptoms for much longer.
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The waiting times are dire. Psychologically it is very hard. I find myself getting bitter and twisted when I hear of others being seen, tested and diagnosed in a matter of weeks. The NHS is a mess and patients are suffering. Can’t blame the individual doctors - most of them are working flat out and trying to do their best, whilst knowing that the system is failing many.
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Finally, something that feels like progress. Though not all is positive. Symptoms (old and new) have been worse the last few weeks, recent heatwaves have not helped. Spoke to a GP today who has written to Neurology to say I should be seen ASAP as a high priority. He’s also the first doctor to directly tell me they think I have MS, previous doctors had only asked about family history and skirted the issue. Well hopefully I hear from neurology soon as I’ve waited over the average time already and with the GP asking them to expedite it. Maybe I’m being too optimistic though. Fingers crossed.
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Fingers crossed for you.
I cried when I got the call for the appointment but I have finally seen a neurologist! Urgent MRI referral and GP written to in order to get amitriptyline prescribed to help with pain in the meantime. Finally some progress. Does anyone have any experience with consultants writing to GPs for prescriptions? I’m not sure if I wait to be contacted or if I should call the GP tomorrow or Monday. What are the turn around times on these things? Apparently amitriptyline can take 4 weeks to start having an effect so would like to get on it asap.
Sounds like you are making progress. If you feel comfortable to and as your doctor has been proactive you could always ring to give them an update. The doctor may decide to prescribe ahead of receiving a letter.
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Wow and just a day after my neurologist appointment I already have a date for my MRI and it’s only a week away! Honestly after so long of nothing happening it feels weird and almost scary the speed at which things are moving now
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I am glad that things are moving for you. Yes, it can be disconcerting when things go from dead-slow to full speed in an instant - and equally so when that happens the other way round! It’s the having no control over any of it that’s the disorientating thing, I find.
Had an neuro appointment last week and MRI booked in for next week
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Well, this will likely be my last post on these forums. To my surprise the MRI came back normal. So it’s not MS. I guess I should be happy but with no diagnosis, still being in pain and having spasms and other symptoms, I’m not. Neurology said I’d have a follow up regardless of what the MRI showed but they’ve gone back on that and consider my case closed without giving me any diagnosis. I’ve previously seen a rheumatologist who said this is definitely neurological and the GPs have no idea what’s going on and have no plans going forward for any more referrals or tests. Looks like I’m just going to have to suffer.
All the best.
Flippin’ heck Joe, that sounds grim. I would make it as difficult as possible for the neurologist to close your case. There is clearly a problem that needs to be properly diagnosed and if possible treated. Surely they can’t just shrug their shoulders and say “don’t know” .
If they do not know, then they should help to reduce the impact of your symptoms. Wishing you all the best
Mick
I believe the ship has sailed on that. They didn’t even bother with the follow up I was promised. I haven’t had anything from neurology, no discharge letter or anything but the GP definitely said they had closed my case. I have a feeling they’ll give me a hand wavey diagnosis of fibromyalgia despite me seeing a consult rheumatologist relatively early in my care who said it is not a good fit for my symptoms and I have something neurological causing them.
Frankly just feeling extremely depressed and angry about it all.
I am sorry that you have been left in limbo. The story isn’t over yet, and time, as they say, is the best diagnostician. You will get to the bottom of it in the end, but I can completely understand that you feel pretty low about how things stand just now.
I would also be angry. If the neurologist wont help, I suggest you make a BIG fuss with your GP, and when they don’t help, there should be a practice manager you can make your views known to. If that fails, you could try making a fuss with the press or your MP. I know this sounds like pointless waffle, but if you just melt away and suffer because of their lack of commitment they will find it easier to do the same thing over and over again. If you are angry, let them know and share all of your issues.
So sorry to hear how unsupported you feel. There may not be any proper solutions but you should get support even if it is only a sympathetic hearing and a bit of encouragement.
All the best
Mick
It’s possible I spoke to soon on this. Saw my GP about something unrelated in December but I mentioned about me having my case closed unexpectedly by Neurology. GP emailed neurology to double check if there was anything left to be done. Neurology unexpectedly said that none of my symptoms were neurological in nature and that they recommend I see a dentist for my jaw pain. This immediately seemed very odd to both me and my GP as I have never complained of jaw pain and I’ve been seen by a number of GPs and a rheumatologist who all agree that my symptoms appear to be neurological in nature. It seems possible that neurology have mixed up my notes. Anyway, I’m having a face to face appointment with the GP to go through all my symptoms again so they can send an up to date and accurate letter to neurology. My expectations for neurology to do anything are low but we shall see.
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GP confirmed again that only neurological conditions could explain my symptoms and is writing back to neurology urging them to recognise that they have made an error and to see me again. We shall see.
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It does sound as if they’ve mixed you up with another patient - not helpful either for you or for the other patient! I hope that you and your GP get things back on the rails soon.