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A quick question for people with RRMS...Inspired by the post on nurses and neuros being not too helpful.....

Hello all, i read the post on MS nurses and neuros not being very helpful and TOTALLY agreed with it. I get most of the answers i need from blummin’ (for want of a stronger word) Googling things and coming on here. I feel like I’m totally going it alone. I feel like it have to virtually beg to get help with things and i have to get to such a low point before things are taken seriously.

Wanted to know how often people see their Neurologist and how often they see their MS nurse and how long your MS nurse takes to get back to you if you call with a issue you want addressing. Want to see if it is the same answer across the board or whether or not it varies geographically or for any other reason.

Thanks for your help

Kate

Hi Kate

I see the neuro once a year for a Betaferon check up. I don’t have an MS Nurse.

Hth

Val

Hi Kate,

I have only just started to get help from my MS nurse and Neurologist, but I have only just learnt how to complain about all the pain I’m in and the symptoms I have.

My last Neurologist appointment I walked in with a list of all my symptoms (an A4 page, I was horrified when I wrote it) and he and my MS nurse realised that I had been suffering in silence.

I now see my Neurologist every 3 months! My MS nurse usually comes back to me now the same day, but I also now see her every 4 weeks as she does my Tysabri infusions.

Before I presented them with a list I was lucky to get any input yearly…I had also never been told what to do if I had a relapse or what a relapse was! 5 years of not reporting a relapse is not very good (after 10 years of waiting for a diagnosis!)

I based in Scotland, which does have a huge rate of MS, so care is probably slightly better than some places.

Hope this helps

Isobel

I’m sure it varies a lot. You don’t need to spend long on this site to be reminded of how lucky we are here in the GRH catchment area. I’m really sorry you are not getting the support you need.

Alison

x

Hiya

Dont see neuro-a waste of his time and my own.

MS nurse fantastic-I contact her-via email-and she has always resonded the very same day (via email or phones me) Physically, have only seen her twice in 5 years-hasnt been need for more frequency.

I am not a lover of wasting time (again-mine or someone elses!) I am happy with the current set up. (tho I appreciate its not ideal for all)

As for my GP-thats a different story! He is FAB! We trust each other-which I feel is very important. Dont see him that often-only when necessary-sometimes a phonecall is all that is required.

Ellie x

l get on well with my GP - but all she knows about ms is mainly information l have given her - including books on vitd3 -

‘Could it be B12’ [good book] lnfo on LDN and Sativex. She did manage to get me Sativex on prescription. ln 30yrs l have seen a neuro 3 times. l hope never to see him again. l have never seen a ms nurse. Apparently live too far away from one.

Had one mri for my diagnosis. And l have spms

So l am hardly a drain on resources.

F.

Hello Kate,

I was diganosed RRMS approx 13 years ago. My life seems to have been a mess ever since. I appear to go from one disaster too another. Perhaps I’m too blame.! I don’t complain enough. I rarely visit the hospital… I.have too cope. Don’t understand why my life has changed so much:( I’m extremely lucky though. I have a fourteen year old daughter who seems to be making my life so much easier at times. She even fitted a new toilet seat at the weekend. :-).

Interestingly though, I have two younger sisters who have also been diagnosed with RRMS within the past four years. Their personalities are very different to mine. Strong, assertive and confident. They seem to have be listened too so much more. They both have Beta-interferon ( brain won’t help me spell that!! :-!) Constant contact with the MS nurses and seem to be coping so much better.

Occasionally I feel like i’m drowning and can’t doggy paddle fast enough to reach the shore!.

Hey… This is a good place too be though.

Ann x

Hi, I have been diagnosed two years and I have seen my neurologist 3 times and my nurse 3 times (2 home visits to show me the injections) My nurse returns my calls on the same day. I’m very happy with the care I have received since being referred to a specialist centre, I live in Yorkshire x

I see my neuro once a year now, saw him a few times in a few months over the time of my diagnosis.

I see my MS nurse whenever I want to, he usually replies same day. I go in for blood tests every few months so tend to save my questions for then, but have rung with queries before.

I have to say I’m delighted with the support, information and care I receive. I feel really sorry for those of you who are going it alone.

I don’t have an MS nurse. I’m still not sure if this is just an oversight, because I know we do have some in the area, but I’ve never been introduced to one, or offered an appointment. I’m not particularly bothered, otherwise I’d have chased it up, but I expected it to happen automatically.

Since diagnosis in October 2010, I’ve seen my neuro once, for less than two minutes, and he scheduled me a follow-up for a year later (coming soon).

I do have the phone number of the Relapse Clinic, if I needed it in the meantime, but I’ve never rung it. I think I’ve possibly had minor relapses, but not serious enough that I wanted steroids, so I couldn’t really see the point of making an appointment, if I didn’t want them to do anything. I could do without any non-essential trips to the hospital, when I’m not feeling well, and I’m sure they’ve got better things to do than chat to someone who isn’t seeking intervention.

Tina

I’ve had different experiences dependent on where I have been living. My first appt with a neuro in Aberdeen led to me being told that I didn’t need to know if it was MS, and that I was to go away. My next was in Cambridge in 2001, my auntie worked for one of the radiologists and helped push and push for my MRI. I then got told to go away and enjoy life, and was given my consultants number. I managed then until after I had my daughter I was in Swindon at the time. I got seen straight away with symptoms by my then consultant, and had a fantastic rapport with my MS nurse. Got seen yearly by neuro and 4 monthly by MS nurse. Then the team changed. A new neuro first of all, treatment regimes changed, no longer IV steroids, always oral, prescription sent out at home. Then when the MS nurse changed it fell apart completely, I didn’t feel like I was listened too. I then moved again, it took ages to see a new consultant, he was thorough but his reports really don’t take into account how I feel, how debilitating fatigue is, especially with 4 children! I’m waiting to see an MS nurse, my occ health doctor thinks I should push more, but to be honest I ran out of fight about 6 months ago and don’t know when it will come back. My occ health doctor thinks she should prescribe me a couple of weeks at a swanky hotel on my own being waited on hand and foot as it would give me chance to recharge my batteries!

I see neuro once per year, was six monthly up to last year - 11 years in. Now can ring ms nurses whenever I want and they have been helpful. Also got referred to neuro physio for help with core stability exercises as my mobility was dreadful 2 years ago.

See gp or ring him if I suffer nerve pain - anything more and I ring ms nurse and she organises for me to attend relapse clinic. I dont always ring, sometimes go it alone as I feel there isnt much they can do as I cannot take steroids. Am more in touch with gp now as taking supplements and hes interested to see if my bloods are ok and continue to be so.

As for the mental aspects of ms, I get lots from other msers on here. I also attend ms meetings, socials etc. Didnt want to straight away but now feel part of a lovely group of fellow sufferers who always share their experiences - thus I get ideas from them as to who to contact for help. Also medication for which symptom helps most.

I live in Yorkshire and very near two major hospitals.

bren

x

I don’t see neuro often now that I am established on betaferon, see ms nurse once a year. If I am at hospital to see her and neuro is there he always speaks, not about ms but just in a “passing the time of day” kind of way. I think neuro has been good, but then he got me onto betaferon in 1996 when most people were struggling to get on it. The current nurse is ok, better than all the previous ones. There are two nurses, the full time one is fine, the part time nod, well guess she must be a nurse but not sure, er knowledge seems limited, to say the least, however always friendly. I hardly ever phone but the last time I phoned when they delivered extra betaferon, she did ring back and sort it out! Didn’t like the first nurse cos she insisted that I suffered from fatigue even when I said I didn’t and as someone newly diagnosed with ms I found this quite off putting. Nowadays I wouldn’t bother! The second nurse was useless, the third was off long term sick! We have a new young Indian gp and I think he seems pretty clued up, friendly, think he will be ok, I have high hopes for him. When diagnosed I saw neuro privately before being transferred to nhss by him and I often wonder if this helped! I am in Aberdeen. Cheryl:)

mark

I live in Essex. I see my neuro once a year, but this year twice. My MS Nurse about the same. I speak to my MS Nurse whenever I feel the need. I have 2 MS Nurses and there is usually one available at the end of a telephone, or by email. Added to that, my GP is very helpful, usually. I feel sorry for those of you without that kind of backup. It really shouldn’t depend on where you live as to what level of service you get.

I’m in Hillingdon (NW London). I have had years when I didn’t see a neuro and years when I’ve seen my neuro 4 or 5 times. I’m on six monthly appointments at the moment. The number of times I see the neuro varies with how active my MS is.

I sometimes see my MS nurse at my neuro appointment, but I’ve never seen her on her own. I phone her when I have a problem, but almost always get an answerphone. She usually gets back to me, but she obviously prioritises who to call first. When I have a bad problem she gets back to me pretty quickly - same day or next morning. When it’s not urgent, I usually have to call several times before I get a reply. Fair enough really - she just doesn’t have the time to answer everyone straightaway.

There was a study published very recently about demographics and access to DMDs. The conclusion basically was that the people who ask, get. So being assertive is very important!

Karen x

There was a study published very recently about demographics and access to DMDs. The conclusion basically was that the people who ask, get. So being assertive is very important!

Karen x

I know this is slightly off the topic but I’m not sure that I agree with this assertion Karen. Being assertive is not going to help if you are not meeting the requirement of having had two disabling relapses in the last two years. In my case, my relapses were mild, not hugely troublesome and roughly one every two years. When I was diagnosed no medication of any kind was mentioned (I attend a large south west London hospital, so not exactly a backwater), and at that time I didn’t know if any treatments were available.

My MS is now secondary progressive, affects mainly my walking but on the positive side don’t suffer any pain. I’ve been taking LDN for the past year and a half and I think it is helping me.

I understand that trials have started testing efficacy of Tysabri in people with secondary progressive MS. Somehow feel that even if it is shown to be effective many people won’t qualify on the grounds of cost. Don’t think that the assertiveness would make any difference as no doubt there will be stringent qualifying criteria.

Regards

Maryla

Hello Kate,

I see my neurologist once a year (can’t remember if he is a ‘Mr’ or a ‘Dr’) and I very rarely see my MS nurse as she has been very ill too. I may see her soon as I am due to have my annual neurologist appointment any minute now.

Good luck with the survey.

Moira

A bit off topic, but your question reminded me of a grumble I have had in the past.

Here’s what I want (I’m talking my pre-Tysabri days - ignoring its particular requirements):

When I’m relapsing I want to get an appointment with the neurologist or nurse specialist double-quick.

When I’m stable I don’t want to see either of them at all!

The trouble is that it is difficult to get an urgent appointment when you need one, presumably because the diary is clogged up with useless reviews where people who don’t want to be there are told, ‘Well, Mrs H, it looks as though you still have MS.’

I would like to see routine appointments made optional, thus making urgent appointments easier to get when you need one.

Alison

x

Thanks for all your responses. I see my Neuro once a year and these appointments do seem to be very rushed. Get me in, check i’m still breathing and i can walk and get me out. I would like more advice and more coping stratergies but my neuro just seems annoyed that i am out staying my welcome. He nearly had a fit when my Mum came along armed with questions she wanted answering and he basically accused me of lying when i said that Betaferon was making my life hell (think he thought i was after the new oral drug, which i wasn’t. I just thought that maybe i was entitled to a decent standard of living). I felt like i was wasting his precious time when what i really needed is to feel like someone had my best interests at heart. Maybe i need to ask to be referred to someone else. I don’t like making a fuss but i guess my quality of life is at stake here so i guess a fuss is called for. Want to write a comprehensive over-view of my treatment post-diagnosis and it’s shortcomings and send it to my local MP so the infomation you have all responded with is helpful.

Kate