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Neuro/ ms nurse appts & MRI scans

I would be interested to know how often people on here are having a review appointment with their neurologist, seeing their MS nurse and how often they are offered an MRI scan.

I still think all of this is a post code lottery.

Hi, at the moment I see my neurologist every six months but have only been diagnosed since August 2015. I live on he Isle of Wight so she comes over from Southampton.

I see my ms nurse once a month as she holds a clinic at my doctors surgery.

Hope this helps

polly x

I see my neurologist every six months, or more frequently if we are trying something new. I have never seen an MS nurse. I mean I have never had a face-to-face interview with one. I know what they look like since they have been around when I have been having Tysabri or my first dose of Gilenya (last week) but we have not spoken on these occasions. I have rung them for advice a few times - I have generally not found their advice very useful.

I think it’s a lot to do with what type of MS you have and if a treatment needs monitoring. I have PPMS and see my Neuro once a year just to keep in the loop, but it’s pretty pointless with no approved treatments available.

Obviously no need for another MRI, as I wouldn’t like to be diagnosed twice.

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But what about Ocrelizumab and Phenytoin? These are drugs for PPMS - don’t you need to see a neurologist pretty regularly to make sure you are on these as soon as they are being prescribed? By the way, seeing a neurologist once a year seems fine - people I know with MS who have gone years without seeing anyone.

Here’s MS Society info about Phenytoin - can’t remember if I already posted this (or maybe someone else did). I know I intended to…

"An epilepsy drug could lead to a new treatment that protects nerve damage in MS patients, according to research published in the Lancet Neurology.

Researchers, led by Dr Raj Kapoor from the UCL Institute of Neurology, found the anti-convulsant drug phenytoin protected neural tissue in patients with optic neuritis. Optic neuritis is a symptom of MS which causes the nerves carrying information between the eye to the brain to become inflamed and damaged."

I think (unusually for me) I’ve been a bit of a postcode lottery winner.

I see my MS specialist neurologist at least once per year, but it’s been a lot more frequent at times because of side effects from DMDs, so when I had a liver problem from Tysabri I saw him about 5 times within about 2 or 3 weeks. And when I had side effects from Tecfidera causing me to stop it (low lymphocytes), I saw him, that was 6 months from my previous appointment. I have another appointment due in March, which will be a 6 month gap again.

I also see a rehabilitation specialist neurologist once per year, he’s absolutely brilliant at drugs, suggested I stop pregabalin that was doing no good, increase Amitriptyline, decrease Baclofen and start clonazepam. All of which has been exactly what I needed, I’m mostly fairly stable re symptoms right now. He also got me referred all over the place, from wheelchair services initially (several years ago), orthotics, physio, etc. A few years ago I was in his rehab unit for about 6 weeks following 2 weeks in hospital for a terrible relapse. That unit is absolutely brilliant.

I have been seeing an excellent MS nurse at least every six months, but who has been available to help in between as needed unfortunately at the present time she has her own health problems so I won’t be seeing her for a while.

But the slack is taken up by the MS nurses who run the Tysabri/Tecfidera clinics. So any problems I can phone them for help.

As I said, a winner with regard to neurologist and MS nurse support.

Sue

I was told I am not suitable for trials due to ldn use and I have no intention of stopping this remarkable drug, which I have been taking since 2004. The truth is I am managing ok with ldn, diet and exercise, so nothing to complain about.

Of course, I understand that each MSers circumstances are different and others may not be so fortunate.

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I have RRMS (although there is a good chance that it is sliding/has slid into SPMS).

I have experience of treatment in 2 different parts of the country as I was diagnosed in 2011 when I as still living in London and we moved to Cardiff in 2012.

In London I had quite speedy diagnosis because of the way I presented (possible stroke so a real emergency). Once I was in the system I was had all my tests (more MRIs, VEP, lumbar puncture etc) done really quickly.

My (eventual) neuro was brilliant and my MS nurse was very, very good - very proactive and always available. I saw her regularly.

The main problem with London was that my DMDs were delayed - to be honest, I think that this was because it was already known that I was moving to Wales (or planning to) so they were reluctant to start me because of resource implications. They clearly wanted me off their balance sheets.

In Wales I am under the main hospital in Cardiff. There is a specialist unit here which combines medic al treatment and academic research in MS (Helen Durham centre). The centre combines specialist neurologists, a team of MS nurses, neuro physios, continence nurses etc etc and they are very good at combining all these skills to address your needs (not that the whole admin system in the hospital doesn’t need a kick up the backside!)

My neuro is VERY hands on. She put me on Tysabri straight away but not only do I have the “mandatory” annual MRI that all Tysabri patients must have but she also has had me scanned more frequently. It is currently running at every 6-9 months.

I see her every 6 months and, when I have had possible relapses and notified the MS nurses, she tends to turn up when I am having my infusion.

I don’t have regular appointments with my MS nurse - but she is very good at returning my calls if I have needed to contact her.

I have PPMS, and like Whammel, only see my neurologist once a year, if lucky. My last appointment, due in October 2015, was summarily cancelled. I am still waiting to hear; writing this has prompted me to ring the hospital tomorrow.

It would be good if I could contact him over Skype or Facetime. It would save me a 50 mile round trip just to exchange pleasantries. As I do not trust myself to drive any more, it is a great inconvenience either to my wife or daughter, although neither would say so, of course.

I have a good relationship with my MS nurse and we can communicate by phone and email. She visits me when required. I live in north Suffolk and I am able to refer myself to services such as OT, Physiotherapy, Continence Nurse and MS nurse through one central number, without a referral from my GP. It works very well and I consider myself fortunate.

Alun

I’m in the south of Ireland and was dx last May with rrms. I consider myself very lucky to be seeing my Neuro every three months then! I don’t know if it’s the norm here or if I’m just being monitored. Dx May, appointment end August, relapse September, into hospital, appt December and mri ordered. Just had appt and results this week. Am changing to Tecfidera now, so she wants to see me again in another three months. I do feel I’m very lucky!

Hi whammel. I started ldn last month. Private script. Spoke with Neuro this week. She won’t prescribe it and despite my best efforts to convince her otherwise, she feels it’s the snake oil treatment. Only time will tell I suppose. At present all I’m getting is a good night’s sleep with it.:slight_smile:

Apparently, there are 100,000 people worldwide taking ldn for a variety of conditions, so not too bad for anecdotal evidence.

Fingers crossed there are more benefits to come.

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I did say to her, thousands of people can’t all be wrong. Thanks for the links and information you gave me to get started!

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Hi I live on the south coast in Southampton. I am on Tysabri medication having infusions every 4 weeks the good thing about the infusions is its a small group, 3 chairs, ran by 2 MS nurses (out of 5) which you can have a general chat with which helps so much not only with the needles, which I didn’t really like, but also with any questions I may have and have a general chat with the nurses and the other MSers.

I see my neurologist once a year to show I am still around and also MRI once a year

Charlie

I’m in Basingstoke. Seen my neuro once, and have another appointment booked for May. I was diagnosed in May, so looks like appointments will be once a year…

I’ve had a brain MRI back in April 2015, and have just had a cervical and thorasic MRI this morning (guess I will have to wait until I see my Neuro at the end of May before I get the results).

Have an MS nurse, who I last saw (for the first time) 7 months ago. I’ve tried to contact her by phone, but it always goes to answerphone (I don’t have a problem with that - I appreciate she must be busy!), and I never leave a message as I’m useless at leaving messages (I get flustered and can’t get my words out). I’ve emailed her a couple of times when I’ve been worried or upset, but never got a reply despite telling her my fears/problems… Just waiting to see if I get another appointment sometime. I will confess, I would have hoped that she would have replied as I’ve obviously been distressed (first time was because I was nearly kept in hospital after my LP as my ‘pressure was dangerously high’ and I was worried there was something very wrong with me! I’d been told I’d get the results in approx 2 weeks, but had really worked myself up when a month later I still hadn’t heard anything, and was asking if she’d heard anything. Second time I thought I was having a relapse - still don’t know if I was or not, as I never got a reply).

I think some neuros and nurses must be oversubscribed. Not a huge help when you’re in panic-mode and need someone to talk to! Thank goodness for this forum though. I’ve been so lucky to have some wonderful people offer help and advice!

I’m in Devon and I see the neuro consultant once a year and the MS nurse once a year - so I see someone once every 6 months. Diagnosed in Nov 2012 and haven’t had an MRI since then, but would quite like one soon as I feel I’ve deteriorated over the last 12 months… might mention it when I see the consultant next week.

H x

I live in Woking and attend St Peters hospital. i see my nurse every 3 months tho she is available anytime so if i leave a message she will get back to me, she is really good. Does home visits too. Neuro is another story tho, he acts like he doesnt really care. I was seeing him every 6 months but he would only ask how I was with the Tecfidera and pretty much that was it.