I’ve been declining for 9 years. Went from fatigue and joint pain and eye problems to going numb down one side, hardly able to walk, barely out of bed ever. Every time I get a new symptom it matches MS, and they keep piling up. I used to be bad then better and now I only get worse.
I’ve been begging and begging doctors to listen but I’ve just had neurology move me back to the end of a 3 year wait and they refuse to tell me why. I’ve never seen a doctor because nobody will accept my referrals. I’ve managed to have enough blood tests done by a cancer clinic who wanted to help to rule out lupus etc. The cancer nurse even wrote a long letter blasting neurology for refusing my referrals and telling them they had to take this seriously…
Anyway long story short, they won’t see me, so I’m taking out a loan and going private. Can anyone recommend private neurologists who are good at listening?
Bonus points if they’re not hideous to fat people because in the last 10 years I’ve gone from an actual athlete to housebound and have put on weight as a result.
Hi Elisabeth,
I feel your pain. I’ve had an MRI since April, it came back clear and after that I’ve been pushed back on the referral list.
The GP tries her best, but every time I chase up the neurologist they tell me that at the moment it looks like another six months waiting list.
So I’ve looked into BUPA, which I can use through my work. I didn’t want to, cause there’s an excess, but I’m going to have to. I can’t wait any longer.
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If funds are tight, the lowest cost option is probably getting a private consultation with the consultant neurologist who also works at NHS hospital and who specialises in the thing you think you’ve got. That should cost you less than £200 and at least shave some time off that stage. if the doctor wants further tests like an MRI scan, you can decide for yourself whether to fund that privately or to be referred straight back to his her NHS list for further investigation.
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Elizabeth, honestly if you have BUPA cover, use it if you can possibly manage it. No use your employer throwing money up the wall for a benefit that you aren’t getting the good of despite really needing it.
It’s 25 years since my dx, but even back then I was very glad of BUPA cover provided by my employer, and it’s worth even more in these days of longer waiting lists.
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Sadly in my area there’s no actual health board neurologist, and no private one either. There’s only a visiting neurologist from a neighbor health board and he hasn’t got any private appointments left this year and no waiting list for next year. Plus he doesn’t want to see me anyway which puts me off bothering with him…
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I am sorry that things are being so difficult.
Hi Elisabeth,
Are you willing to travel? I live in the Highlands of Scotland and I have to travel 176 miles to the closest private neurologist.
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