So I went to GP and she said although she can’t diagnose she said my 2 week diary and reflex tests she done would suggest to her I need an urgent MS referral. As the place I live doesn’t have a neurologist though the wait time for an URGENT referral is FOUR YEARS. What do I do now? Just live with the symptoms? So frustrating so any advice is appreciated
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Hi Gemma,
That wait time is ridiculous!
You could ask your GP to refer you to the neurology department at another hospital trust with a shorter waiting time, under the NHS Right to Choose scheme (google will explain it more).
You might also consider whether you want to / could afford to see a neurologist privately. I would suggest seeing an MS specialist neurologist rather than a general neurologist.
If you ask people in this group they may be able to recommend someone nearish to where you live.
I saw someone privately for my first appointment and it cost £250 for a 40 minute appointment, just to give you an idea of costs.
I hope those couple of options help.
Wishing you well,
Alison
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That is shocking. What does your GP suggest you do?
Hi @gemmacaddell86 as @lnp8acr says, do try to get referred to another hospital.
It would probably mean longer journeys to and back from the hospital but getting a formal diagnosis and , if it is MS , getting treatment is important
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Get a private MRI and see what it says and then go from there but treatment is only offered on NHS
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Unfortunately we don’t have that option in Northern Ireland
Unfortunately Northern Ireland doesn’t have the right to choose scheme over here. I’ve got a referral from my GP, they have suggested going straight for an MRI as a private neurologist would just send me for one anyway. 4 month wait for private MRI so I will try that
I was wondering whether you were from NI because I knew the waiting time for neurologists there were notoriously dreadful but I thought they had got a little bit better in recent years, but evidently not. I’m really sorry - that’s a bad situation.
Is that something you would consider? It’s a scandal that you have to, but it might be progress of a sort.
I’m in Antrim so the northern trust don’t even have their own neurologist, we have to rely on Belfast ones doing a one day a week clinic
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Spoke to Alliance today, £395 for brain MRI and £895 for a full spinal one. Could cry but don’t see what option I have as my GP won’t prescribe anything for my symptoms bar multivitamins lol
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Hi Gemma,
That’s a lot of money. Is it something you could manage financially do you think?
If you do decide to have an MRI privately it would be worth getting them to do contrast dye - this shows up any lesions that are active, ie there is active inflammation, which equals a relapse. It is relevant as it helps determine which drugs you get access to.
Wishing you all the best
Alison
Hey!! I am from NI and thankfully I have private healthcare in work, I had all my MRI’s done through that or god forbid I can only imagine! I was referred in the 28th of dec back into the NHS and only had my 1st appointment with a neurologist on the 27th of may, been off work since sadly! My mental health has took a massive knock due to everything! I really do sympathise with you!
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