Thanks for the reply Poppy. Up to now I have spoken to the secretary 3 times,the appointments department at the hospital twice and been to see my gp who has emailed the neurology Dept to try to speed things up. I don’t know if my gp has seen the scans or just received an email saying the results were normal. The secretary just keeps telling me I’m on the waiting list and they are way behind with appointments as my consultant works solo and not part of a team. This is why I’m thinking the only way to move things on is to go private. It seems there aren’t enough neurologists to go round on the NHS.
It’s the same in my neck of the woods where I am in the Irish Republic. One neuro to cover two counties! I’ve been very lucky and get to see her as scheduled, every 3/4 months. In your position in think I’d question the Secretary on how soon you could expect to see the neuro by going private. Presumably the same consultant? Ask for a copy of the report to be sent to you and take it with you to your private appointment. Best of luck!
Yes I would probably see the same consultant within a week if I paid to see him privately.it’s annoying how cash can get you to the front of the queue. When I saw him initially he was leaning more towards parkinsons than ms which is maybe more likely because I understand with ms there are periods of remission? Whereas my symptoms have just been getting steadily worse. I keep thinking I must be near the top of the appointment list now after all this time so maybe wait a little longer before paying.
Hi AW1, I agree and think neurologists. at least the ones that specialise in ms are very thin on the ground. You would think his secretary would be able to give you an idea when your appointment will be.
Patience is definitely a virtue in this limbo land.
Marjie x
You would think so but all I get is that they’re running way behind with appointments. I’ll probably have another 3 month wait after I get the appointment letter. It seems that we’re all in the same situation when it comes to getting a diagnosis. Frustrating for us all!
Are you in an area where there’s more than one hospital you could get to that offer Neuro services and specifically MS specialists? If so, check their waiting times too and if shorter, ask to transfer to them.
E.g. I attend the QE in Birmingham, but could also get to Coventry if required. (I should say I’m very happy with QE team and have no reason to move!)
Also, you said above you understood MS offers periods of remission - not always. RRMS is Relapsing Remitting MS, but Progressive MS = a steady decline without remission.
Hi AngC, unfortunately I live near Hull and as far as I know that’s the only option around here. Thanks for the tip about progressive ms, I didn’t know about that.
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Hi everybody, I’m now 7 months overdue for my follow up appointment. Still haven’t heard a thing. Is this because the scan results were normal so they don’t want to see me again? The neuro seemed to think Parkinson’s but I think ms is more likely if anything. Could I see mygp about a private appointment with a ms specialist or do I have to wait to see the same guy? Beginning to suspect ppms due to symptoms.
Andy, if you have not yet investigated the excellent factual information on MS on the main part of this MS Society website, may I suggest that you do? The orange ‘What is MS?’ tab at the top of the page is a good place to start. You will find good information on there - if I recall correctly, there is a good section on symptoms and this includes pain, what causes it and how to manage it.
I know how unappealing can be a load of information about an ailment you hope that you haven’t got. But you can navigate your way to the ‘pain’ section easily without having to wade through other stuff. I hope it helps.
Alison
Andy.
If i was you id go back to your GP and explain it all again . Ask your GP to please get in touch with the neuro department , as Alison has suggested read up on the orange bars on this ms website it has all the information you need .
Only 15% of people diagnosed with ms are ppms . You havent been diagnosed with ms yet let alone ppms , there are plenty of folk on this forum with ppms and im sure they can explain to you what symptoms they have and the everyday lives they lead .
As i said see your GP if no joy bite the bullet and go private , but Dr Google is only going to make you paranoid .
Iain .
Thanks for all your replies, its good to talk to people In similar situations. I’ll see my gp one more time and then go private if I have to. Thank again Andy
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Hi again, hope everyone is doing OK. Time to bite the bullet and go private. Can anyone recommend a good neurologist in the hull area? I don’t want to pay to see the guy who’s been keeping me waiting since April for my follow up appointment. Thanks Andy
Oh Andy, you are so impatient. It’s only been a year since you started this thread. And a wait of what, 7 months since your follow up appointment sounds like it’s gone by so fast …
… and in reality, I honestly don’t know how you’ve been able to be so reasonable about all this waiting.
I hope someone can come up with a good private neuro in your area.
Sue
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Worth a look under the ‘near me’ orange tab on the main site - you can do a search on specialists in your area. Bear in mind that it might not be your NHS neurologist’s fault that you have been left dangling - he/she might be super-competent but trying to do the work of four. His/her private list might be a very different experience. Does your GP know the local scene? Also, there are sites on the web (including your NHS hospital’s site, quite possibly, that will tell you which neurologists specialise in MS, and (in some cases) where they practice privately. Your local private hospital sites are worth a look too.
Alison
[quote=“Ssssue”]
Oh Andy, you are so impatient. It’s only been a year since you started this thread. And a wait of what, 7 months since your follow up appointment sounds like it’s gone by so fast …
… and in reality, I honestly don’t know how you’ve been able to be so reasonable about all this waiting.
I hope someone can come up with a good private neuro in your area.
Sue
[/quote] You are right on this. There are no reasons for fast answers in this situation. I`ve got symptoms since may this year - Lhermittes, eye pain (suspect opticus neuritis because loss of color vision i my rihgt eye), back pain, frequent urination and the list goes on. I spent approx 1000£ in private doctors - brain Mri, spinal mri and LP. Everything was normal. But symptoms persists. Everything is pointing to ppms for me - slow decline and no remisssions. But I dont have a hurry to get a diagnosis - time will give the answer. There is a terrible lack of cures for ppms so why should i pay extra for “not so funny news”?
Thank you for your replies. Sue, that was great! Yes I am patient but the patience is now running out. I agree with you jamesbex about not rushing into something unwanted but things are getting steadily worse so I need to take action. I’ve found the local neurologists on the the websites but was hoping somebody could recommend a good one. The one I saw originally said not MS but more likely Parkinson’s. I disagree, what I’m experiencing doesn’t seem to fit with Parkinson’s disease at all. When I rang the appointments department at the hospital I was told that the neurologist works alone without a team so that’s probably why the wait but I don’t want to wait any longer. It’s terrible that there are so many of us in the same situation and I’m bewildered by that. Thanks. Andy.
Hello again everybody and happy new year, well I finally have my follow up appointment. Not bad considering it was supposed to be in April last year. I can only say I’m pleased I didn’t pay to see him privately. I’m not expecting to get any further towards a diagnosis as the scans we’re negative so what happens next I wonder. Hope you’re all doing OK. Best wishes. Andy
Hi all, finally saw the neuro a few days ago after a 9 month wait. He told me the scans and blood tests were normal and asked me how I was. I had a list of symptoms ready but when I told him about the leg pains keeping me awake at night and the walking difficulties he said anyone can get leg pain. When I told him about the fatigue he said everyone gets tired and when my wife told him about the mood swings and lack of facial expressions he said everyone gets moody sometimes. After that I didn’t see the point of telling him the rest. I had more blood taken and an ECG done and he’s arranged for me to have a ct scan on my chest. I’m concerned that he doesn’t think I have a neurological problem based on the brain mri and datscan results. It feels neurological to me so I don’t know what to do next. Any comments and advice would be greatly appreciated. Thanks. Andy
He sounds a right waste of space. I would be changing to a new neurologist immediately. I know its time factor but waiting 9 months to be confronted by that prat says it all. Dont deal with him. Report him as well. It is so stressful dealing with muppets.
Aw Andy
What a flaming anticlimax. He sounds like he’s got the interpersonal skills of a gnat. One that you’d like to slap.
But if you don’t have any MS type lesions on the MRI, then it does sound like it’s not MS.
Then again, he’s dismissed everything you’ve said about ongoing symptoms.
I’m so sorry, I don’t have any brilliant suggestions as to where you go from here. See your GP and ask for their advice?
Sue