crystal-2017 28/01/18
Last reply 2 months ago
MS Nurse

Hi everyone
Since my diagnosis in Oct 2017 I have finally been referred to a nurse which is in a month’s time. I wondered what to expect and what support they offer? Who can refer you to a physio?

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cameron
2 months ago

I don’t think there’s one answer to this. It will depend on the services available in your area. My hospital in London has its own neuro-physio department, so the nurses can refer directly. In my local hospital, however, where I choose NOT to be seen, the physio department is a general one and is very overstretched. Also, because of funding cuts, the GPs are no longer able to refer physio requests to local physio practices, because all neuro referrals must be channelled through the hospital. So – locally, people’s choices are to get in the queue for the NHS physio or go privately. Not good, I hope your area is better.


cameron
2 months ago

PS In answer to your query about MS nurses – they are a wonderful source of support and information. A good idea is to formulate all your questions before your meeting so that you don’t forget anything! x


stumbler
2 months ago

@crystal-2017 , MS Nurses may be able to refer you directly for physio.

In my area, my MS Nurse is able to get a physio referral for me in a couple of weeks. Although, I’m sure this will vary by area.

Otherwise, your MS Nurse should become a very useful resource for you. They tend to sit between your Neuro and your GP and can liaise in either direction. They only work with MS patients, so have a decent level of knowledge.

Being Primary Progressive (PPMS), there is no specific MS treatment available (although KIV the impending introduction of Ocrevus), but your MS Nurse will be able to advise on symptom management.


stephz
2 months ago

Hi @crystal-2017 Have a look if there is a MS therapy centre in your area – mine is 1 hour away and I referred myself to a physio there – was seen within 3 days of phoning and got a great routine made to suit me. I pay £20.00 a visit and decided for now to go once a month to keep me in check with my exercises. The centre also offers massages, pilates, oxygen chamber etc.
Other than that I think your MS nurse or GP can transfer you but you might have to wait longer.


crystal-2017
2 months ago

Thank you everyone. Sounds like the ms nurse is a good place to start for now.

@cameron. The plan is to make a list this time as last week seeing the neuro I forgot until afterwards. Thought I would start early preparing.

@stumbler. Sounds good and you have given me more hope. In a strange way I am now looking forward to it and any help.

@stephz. Not sure about a centre around here but it is worth me looking into as a back up plan, thank you.


stumbler
2 months ago

@crystal-2017 , your local MS Treatment Centre is in Leeds :-

http://mstherapy.org.uk/mstherapy/


crystal-2017
2 months ago

thank you @stumbler, this is very helpful and kind of you.


snowyowl
2 months ago

I see you are from Wakefield- me too! Are you seeing a neurologist at Pinderfields?

I’ve seen the MS nurses there and they were excellent- having a list of the questions/assistance you require is key

Here if you wanna chat 🙂


crystal-2017
2 months ago

Nice to see someone local.
Yes just seen Dr Al-Din finally so thats why can now have a nurse!
That’s good to know. Yes I will do a list this time

Thank you ☺


snowyowl
2 months ago

I’m with Mr Al Din too, small world! sorry it took so long for you to get to see the nurse .

Hope your appt goes well, they seem to be a good team there once you get in the system 🙂


crystal-2017
2 months ago

He is the top one so fingers crossed! They would not let me see a nurse until I saw him last week. Seems to be long wait for things but doesn’t help he is part time.

That is good to know as with being messed around since October last year I don’t have high hopes at the moment. He was really nice though so good to be finally in the system. You seem to have done well with your appointment which is good.


snowyowl
2 months ago

I was diagnosed in October 2017 so were similar there too. Was a shock and a lot to get my head around. Yeah I like Mr Al Din, as soon as I saw him things started happening and I wouldn’t want to be under anyone else.

You should hear more from them now but anything you’re unsure of ring the MS nurses 😊


crystal-2017
2 months ago

I know how spooky is that?!! Yes it was for me too and I am still trying to get my head around it, although I had been on Google and my symptom matched it so was hoping it was not going to be that. Yes he seems nice. Was very friendly which I was not expecting, so I am glad as I saw Dr Henderson first who told me my news and he was awful so blunt and negative, then referred me to Dr Al Din.

I go on 23rd February to see a nurse so I am getting closer at least. I will do once they give me a contact number. Glad they are helping you. Its a big help when trying to deal with this. I felt very alone as given the news then left until end of Jan


snowyowl
2 months ago

I’m sorry that you have been waiting a while. I suppose I’ve been lucky in that respect (although I’d rather not have ms at all) . I was diagnosed in six weeks and saw Mr Al Din pretty quickly after that and have also had a follow up with him recently. I got shingles pretty quickly after my diagnosis which left me with constant pain and he is helping my GP with my treatment for that.

The MS nurse number is *********** if you want to try them to see if they can help you

** Phone number removed to protect privacy. Please pass personal information by Personal Message ** Admin (Stumbler)

 


crystal-2017
2 months ago

Its just the NHS I guess. I was also diagnosed very quickly as my GP pushed me through as an urgent. just since the diagnosis that it came to a standstill. Glad you have had lots of support with them. Sorry to hear of your shingles and the pain. There is nothing worse than dealing with pain everyday. I hope they can sort it out soon and you get some relief.

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