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Advice to either go see neurologist or not please

I have spent the last three months trying to arrange to see different specialist. As well as having MS, I also have endometriosis, throat issues, bloating etc. So have been trying to get some answers and deal with the stuff that I can't stop i.e. MS progression, and hopefully alleviate the stuff that can be fixed so to help with my MS symptoms’.

I eventually got an appointment with a neurologist I had been advised to go and see a particular lady as her experience with MS was well known. However when i got the letter it was for a different lady, went to see her to be told MS wasn't her speciality and I should have seen the first lady as especially since the first set of medication for MS made things worse. During this time I also asked for an appointment with the MS Nurse, it was not the most successful meeting due to me not sleeping very well, she asked if I had spoken to a councillor, I told her it was due to lack of sleep, and if been truthful the amount of mucking about I had received from the NHS do they not say sorry when they much up appointments or leave you sitting waiting well beyond your appointment time.

Anyway I called the complaints department of the hospital involved. Had to call again on Monday and I said if I don't hear from you by 2/12/11 I will be logging a formal complaint. The woman duly called today to say she has an appointment, now when I saw the MS nurse she said I can deal with everything and you do not need to see a neurologist, but wasn't too happy with her client care so now in a Dilemma, any thoughts ,

 

trishletdown

 

Hi Trish,

I'm sorry if it should have been obvious to me, but what specific problem were you hoping to see the neurologist about?

If it was about DMDs: starting them/stopping them/changing them, then yes, you'd definitely need to go to a neuro for that.  But if it's about symptom relief, then your MS nurse, or even your GP should be equipped to deal with that, without having to send you back to a neuro.

I realise it must be rather offputting if you didn't actually get on with the MS nurse.  I can't really comment, as I don't even have one.  That's why I rely on my GP for most day-to-day matters, such as control of pain and spasticity.

I only see my neuro once a year now.  I wouldn't expect to see him in-between times, unless there was a drastic change in the way my MS was behaving, and I needed to review my treatment options.  I don't think a neuro is necessarily the best person for day-to-day management of symptoms, anyway, as they seem to consider that stuff a bit beneath them.  Mine has been involved for diagnosis only, and for strategic decisions about whether to go for DMDs (we decided not), but he doesn't discuss day-to-day care and management with me.

Tina

Hi Trish.

I agree with Tina,and hope you and the MS nurse manage to sort out any further problems,if not is there another MS nurse you could see.

If not then i am at a loss in how to help you,hope someone else has a better insight in to your problem.

Take Care.

Chris.

Hi,I agree with above posts and the MS nurse is probably the best person for you to see.They can al least get the ball rolling and refer you to the Neuro or other professionals if needed. My MS nurse referred me to the neuro physio at the hospital,probably much quicker than if my GP had. MS nurse can also prescribe steroids(if needed) and fax/phone GP if any other medications(other than DMDs) are required.

Its worth seeing her again and hopefully next time it won't be such an ordeal.

thanks for the reply, already having to reduce medication , but when i was starting on this MS nurse said it was the lowest dose, confused or what confused