[
](https://Hello all . I had a diagnosis back in January but I’ve been on a
waiting list since to see the
neurologist again . I’m scared anyway and now I’m getting more scared of getting worse and not having any medication . I’ve chased for an appointment and I have been told I’d have one soon and that was 3 months ago . Is this normal? Is what I’m feeling normal ? I am at rock bottom
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It is absolutely normal to be scared. I’m so sorry you are going through this. I’d be crawling up the wall in your shoes.
It’s really bad enough to get a diagnosis, without having to face this kind of delay.
Unfortunately, it’s not that unusual, but I do think going on 6 months is far too long to wait. Neurology departments are overloaded - you can look up the average wait for your area on the NHS website.
I know you’ve already tried to chase this and it takes a lot of energy… If your GP is helpful you could try and see if they are able to intervene in any way. You could complain to PALS, the patient liaison service: at least that will show you are going to be a pain if they don’t get on and see you.
If you complain, you could explain in your letter that you know there is medical evidence that early treatment improves outcomes. Add some references to research if you can. So it’s not just you being impatient. Make it clear you are documenting all your correspondence with them.
The only other thing you could do, if you could afford it, would be to go private. If you do decide to do this, do your research and check online reviews on the person before you commit! You’ll still need to return to the NHS for treatment itself, but at least you could have the appointment where you agree what you need. If you have had time to look at treatment (called “DMTs”) yourself, this might save time. If you google “MS Infocards” you should get a set of cards produced by people connected to Barts hospital in London - they are quite detailed.
One small thing you can do for yourself is to look at the NHS website and see what the maximum dose of vitamin D is that they recommend. There is some evidence that vitamin D can help - look at the MS Society website on this. And you can buy it over the counter or ask your GP to prescribe it - your GP could also advise on the maximum safe level for you.
But this is absolutely no substitute for getting on proper treatment. I know you are at rock bottom. But if you can summon up the energy to complain, perhaps worth a go.
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I remember when I was diagnosed ( many years ago) I did make a nuisance of myself by phoning repeatedly to ask when my appointment was so don’t feel unsure about doing the same.
I take it you didn’t get any information about treatment at your diagnosis meeting?
No I haven’t had any info on any medication .i had my MRI , then I had an initial consultation after that I had a L.P which I waited 8 weeks for the results mind you !
I’m scared of infection , scared of the unknown , scared of what kind of ms I have - so basically everything . It’s turned my world upside down
Thank you . I have chased my appointment today unfortunately there is no direct line apparently so I had to go through to the help desk to rely on them giving a message . I will give it a week and they again !
Thank you for all the other info it is so appreciated! X
It’s a long time , as in 19 years , since I was diagnosed but I do remember having to wait what seemed like an agonisingly long time between MRI and seeing a neurologist. I know that the wait times have increased since then but yes, I made a real nuisance of myself with repeated calls to the neurology dept. Managed o speak to MS nurses and just made a nuisance of myself until I got some answers.
I didn’t have a lumbar probably because the MRI revealed ‘quite a few’ lesions in my brain and to be honest I’ve never been sure why LPs are required .
Best thing to do is keep phoning and in the meantime ther are things you can do. The general advice for people with MS is: take Vit D supplements, you could also take Vit B 12 ( low Vitamin B12 can lead to MS like symptoms) , follow a healthy diet - in general the guide of ‘what’s good for the heart is good for the brain , and what’s bad for the heart is bad for the brain ‘ is a useful starting point ( personally I follow the general recommendations put forward in Overcoming MS - living well with MS) , and finally - exercise!
I also do ‘mindfulness/ meditation’ to calm my mind and body ( stress and anxiety is generally bad for MS).