MS Nurse, Kathy Franklin joins us live on Thursday 26th January for an exclusive webinar.
Whether you’re newly diagnosed and worried about treatment side effects, or you’ve have been living with MS for years and need support to manage your condition, this is your chance to ask an expert about MS.
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How long should we expect an answer when we leave a message to speak to our MS nurse? I rang neuro secretary as I am in so much pain i cant bear it anymore well i spoke to my GP first, she told me to ring my neuro secretary and ask to speak to my MS nurse who i havent met yet anyway. Nearly a week on and nothing and I am pulling my hair out in pain. Burning legs and body from waist down, spasms, cramp, vibrating, buzzing head, and when i move my neck now i get like an electric click. The pain is worse after 2pm and nights are horrible. I was diagnosed a year ago with PPMS. I have always had pain but this is on level 12. I dont know whether to ring again, my GP is off this week. So should I have heard something by now?
Whilst I have been experiencing some symptoms and seeing neuro on and off for over 10’yrs I have just been formally diagnosed. I am relatively symptom free but aware my ms has been leaving scars without my having or maybe it’s my recognising the symptoms … when is it a relapse and when is it just the existing scarring causing problems ? E.g. I frequently have continence issues , fatigue , buzzy legs and scalp etc which can last for days . I don’t tell anyone outside of my appts as they aren’t new symptoms and I count myself lucky they are the worst of it
I’ve had the same problem as my MS Nurse is part-time - it took 7 days to get a reply after I left a message on her answer phone.
For burning - like someone has poured boiling water on your brain or body - that pain - call your GP on the phone say I need either Amitriptyline or Carbamazepine - both of these meds have worked well for me.
Just get your GP to write a prescription and send someone to pick it up.
Don’t suffer!
Get better soon.
Pj.
My questions:
1). I’ve heard there are going to be changes to Wheelchair Services - the patients are going to get their own
wheelchair budget - could you tell us more about how this will work?
2). Faster access to medication: Could a set list of most common meds for MS symptoms be emailed to all GPs? Or perhaps and old styled poster to hang on the GPs wall.
This would greatly reduce suffering and anxiety.
3). VirginCare: http://www.virgincare.co.uk/
Many people are unhappy with the privatisation of the NHS. The MS service has been taken over by Virgin, can we opt out and access MS services in an alternative way, or should we just see our GPs?
Thanks you!
Pj
Those sound like very good ideas to me, especially making GPs more aware of MS meds. Ive been having worsening symptoms in the last week and thought about going to the GP. But, based on recent experience, I expect that he will have no idea and just treat it as if non-MS related. I would probably end up with painkillers but Im not sure they would work. As to privatisation, I shudder to think what the NHS will be like in ten years time.
What exactly do ms nurses do? (I don’t mean that cheeky it’s just never been explained) I’ve only met mine once and emailed over a month ago to let her know I was having a relapse and still haven’t had a reply. Also can’t be reached by phone and doesn’t accept messages. I ended up just contacting my neurologist directly as I had no response. I don’t know if nurses are overworked but surely and acknowledgement would only take a minute to email back.
I’ve rang my Specialist (lol) MS nurse 3 times so far this week and he is yet to even give a courtesy call back.
Total waste of time.
Last week I rang the MS clinic and the MS physio just happened to answer the phone, after a brief description of what has recently been going on with my symptoms she immediately made arrangements for me to visit the clinic, next morning I’m sitting in front of my neuro.
What a difference in attitudes towards this illness.
I’ve just had an appointment with my GP and she freely admitted that as far as medication goes it’s pretty much over her head.
Two other GP’s from my surgery have basically said the same thing to me over the past few months.
2). Faster access to medication: Could a set list of most common meds for MS symptoms be emailed to all GPs? Or perhaps and old styled poster to hang on the GPs wall.
A very good idea
They are there to offer support and information as well as having detailed knowledge of the DMDs. They are specially trained in matters of MS and are (supposed to) keep up to date with the latest info by attending conferences etc. (At least that is how it is here in Ireland).
Personally, I think they believe they’re “elite”. Yes they are overworked and under resourced like all the NHS/HSE (Ireland), but they still have a job to fulfil and a duty of care to their patients.
Mine is very elusive. In your case, I would forward that email to her again and inform her that, this time you are sending a copy to your Neuro’s secretary, “just so he/she is aware of your circumstances”… Bet you’ll get a reply soon enough then!
Dear GP,
MEDICATIONS for managing my MS symptoms
A wide variety of medications are used to help manage the symptoms of MS. Below are common symptoms of MS and the medications used to treat those symptoms.
Just scroll down the long…long list:
http://www.nationalmssociety.org/Treating-MS/Medications
Pj
Do not like what I’m reading here .how was your nurse not explained to you.?.maybe it’s different here in Scotland.she phoned me 1day and o got appointment 2days later.went to see her and was able to speak to her by phone next day just to clarify some points.she is going on hols for 3weeks but I now have a full supporting nurse till then. Why do you put up with all this at all
.
I live in Scotland too and only diagnosed a few months ago. After trying to phone several times and waiting on a reply from email for over a month regarding relapse I just contacted my neurologist who is now doing something about it. I’ve not got a lot of patience as it is but a facility to leave a message on nurses phone would be a start.
It is same old same old. Lots of people with MS and not enough MS nurses. I feel that we do not get the time or attention that we deserve due to the workload of the nurses. Most of the threads refer to the delay in response by MS nurses to telephone calls from patients. I agree with this and the one time I called I to had to wait several days for a response. For someone with MS several days seems like several weeks. The delay in response I feel results in sufferers symptoms worsening when a quick response could alleviate this. I also feel that MS nurses do not offer advice as they would not like to suggest something that might not work. I feel that it is me researching and looking for what is available for MS sufferers and that I do not receive any guidance. MS nurses do have a very difficult role and are understaffed but an MS sufferer should not miss out on guidance/treatment due to this. I would like to think that if MS nurses have a more manageable workload patients will receive a better service. Can MS nurses tell us what they think are the problems and make suggestions on how to solve them?
Bit of a rant, but thanks,
Jon
Gosh I really feel for those of you who have had problems with your Ms nurse. I didn’t realise how lucky I’ve been with mine
I have two and if I leave a message it’s always returned same day, and my problem discussed and medication authorised by either my doctor or Nuro . If they think I need a appointment with my Nuro they arrange it usually within a couple of weeks.
My last urgent call was about extra symptoms although minor, tingling and nerve pain I was seen by my Nuro
within days and it was decided that I could start A DMD and was give a choice and took info home to decide which one I preferred well Tecfidera looked the best so I phoned my nurse and told her my decision and she booked me in to discuss and start the following month, but I actually got another phone call from her to say there was a cancellation and could I go in the following day. She chatted to me about it all side effects etc and told me she’d arrange a prescription for me to start and I picked it up the following week.
I can only say my Ms Nurses are great! I guess the area you live in is relevant. I’m in Swindon in Wiltshire.
Ann x
Question for the ms nurse,
i have recently started Amantadine 100mg once daily for 2 weeks for fatigue, then go to 100mg twice daily. So far I have felt no improvement, it’s only been 5 days, I know that dose can be increased to 400mg, what are your thoughts on this?
I have another question with regards to return to work. I was diagnosed in December 2016 following a massive ‘relapse’ which started in October. I have been told that i have had RRMS since at least 1997, unbeknown to me. The latest event has left me with limb weakness and dreadful all day fatigue. I have not yet seen a specialist in MS or started DMD, but have had a course of steroids via a consultant neurologist. I have seen the MS nurse and my GP has now referred me to a MS consultant, I have started vit d and Amantadine. I’m due to have a meeting with occupational health doctor in less than 2 weeks with a view to ‘phased return to work’, I work in a very stressful, physically demanding job an a NP in a walk in centre. I do not feel anywhere near ready for work, but don’t want to give in my job. What’s your advice please?
Hi KT
It might be worth asking for other reasonable adjustments in addition to te phased return to work, such as changes to your role so you don’t need to be standing up for so long or flexible hours so can avoid the rush hour if there is one where u live. Or could ask for more breaks during the working day. As long as the adjustment is reasonable then there will be a legal duty on the employer to make it. You could even ask for some time in a non-face-face role. Though Im not sure what an NP is: nurse practictioner?
best wishes
Ruipert
Hi KT201,
My thoughts on:
Should the demand for a “phased return to work” and “reasonable adjustments” really apply to patients with a neurological disease like MS?
Because, it is like repeatedly having a stroke in many respects - it’s not like you had a minor opporation or a broken leg.
I really think this should be challenged by the MS Society - I don’t think these ESA concepts should be applied to MS patients.
You know you will change over time - it’s so hard to judge how you will be in 6 months time or next week.
But it is worth considering all your symptoms at the moment - not just physical - but cognitive.
How is your short-term memory?
How are you at processing information you have to respond to?
Consider your response times - are they normal??
Are you likely to make errors which may affect the safety of yourself or others??
Do you deal with a series of numbers and data??
I remember being given a memory test by my GP - I was stunned when failed such a simple tests.
Worth having all this assessed if you operate machines etc.,.including driving.
I worked about 17 years full time - but following a bad relapse at 37yrs, I gave up working altogether.
Looking back, it was a wise move as I have declined each year since then - not just physically - but mentally.
You have to be realistic and not pressured into conforming to DWP government propaganda memes designed to drive the
feckless back to work following - minor illnesses - this is a major life changing disease.
It may be time for a rethink.
All the best - get better soon.
Fay
Hi Rupert and Fay
Thank you both for your advice, very helpful pointers for me. Fay your quiet right, I have described myself as feeling like I have had a stroke because most of my symptoms are on one side. I will use your comments and questions as a vehicle when I meet the occupational health doctor. Yes Rupert NP is a nurse practitioner, sorry I should have made that plain. As you say Fay you can gradually improve and I’m doing that week on week, which keeps me optimistic. I’ll let you all know how I get on. Good luck to you both. Finally Rupert you sound a lot more upbeat, I’m pleased to see that. Take care. X
Thank you so much for your questions and comments.
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