MS Society UK | Forum

The right to see a Neurologist

Hi, hope you all had a good Christmas.

I have been wondering is it normal to have not seen a neurologist since diagnosis. My husband was diagnosed 5 years ago and hasn’t seen a neurologist since. He did have a telephone appointment last year to see if he could have Ocrevus, but he couldn’t. He has yearly appointments with the MS nurse, most recently via telephone. Does he have the right to see a neurologist as he has gone worse. He’s not been given any medication, he now has double vision also which has made his walking even worse, he doesn’t have any physio either. Should I be kicking up more of a fuss on his behalf, I just feel he’s been left to it, he’s 54 years old, no longer works. I understand that he has PPMS and he will get worse, I just want him to have anything that can help him. Any advice? Thanks once again.

Hi Debbie29
My understanding is that everyone with MS ought to be able to see a neurologist once a year. Once the holiday season is over, start on the neurologist’s secretary and see if you can get some joy there.
All the best. Moira

Hi @debbie29
If your husband’s condition has got worse, definitely kick up a fuss and request an appointment with his Neurologist. He can visit an opthalmologist / eye clinic if you have one near you, for the double vision. They will most likely give him a prism to stick on the lens of his glasses. If he doesn’t wear glasses, I recommend getting a non prescription pair for the prism. I’ve had double vision for 5 years and it really does work. If you have access to an MS nurse you could contact them and request the Neuro appt, but don’t be fobbed off and be prepared to either phone his Secretary direct, or write to him.

Put everything down on paper, keep a note of what symptoms and when. It all aids the Neuro when he finally gets his appointment.

Good luck!

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Hello Debbie

I’ve found that my Rehabilitation Specialist Consultant is actually more helpful than a straightforward neurologist. He is a neurologist, but is much more about rehab - he’s great at drugs, referrals to physiotherapy, OT, orthotics, etc, etc.

I used to see an MS specialist neuro, but as his primary interest was in disease modifying drugs (which I no longer qualify for as I’m Progressive Relapsing and am too disabled for any DMDs), I found he was of less use these days. I saw both doctors for a few years, but ended up asking Dr Rehab if I could just see him. (Best decision I made!)

So it might be possible for you/r husband to see someone similar. Have a look through your local hospital consultant list to see whether there’s the equivalent. Otherwise, ask your neurologist (email the secretary?). Or you could get a referral to local neurological physiotherapy? Ask your GP for help? That might be as useful as a neurologist.

I’m not disputing what others have said btw, surely everyone has the right to see a neurologist annually, even if it’s a phone consultation, not only an MS nurse, however good yours is. (In my experience, many nurses are excellent!)

Sue

Hi debbie29,

I think you should make a fuss, telephone appointments with the nurses sound ok, especially if there are limited changes. It would be good to have proper contact with a neurologist to ensure you are all doing as best as can be expected. Become a bit of a nuisance and it becomes easier to get an appointment.
Wishing you both all the best.
Mick

Thanks, I will ring the MS nurse and take it from there. I just want him to be s good as he can be.

Thanks Sue, it’s good to know as all of you have experience of this. I’m going to chase the MS Nurse and he needs to go for a blood test in the new year to check vit D and B12 levels, so I’ll speak to the GP also.

Debbie