Firstly I have a booked telephone consultation with ‘occupational health’ tomorrow. I was diagnosed with RRMS just before Christmas, having had ophthalmic neuritis in 1997 otherwise I have been well and continuing normal life, and despite some symptoms, which I now recognise as MS symptoms in the meantime, I have had my first ‘big’ relapse which started in October 2016. I have had MRI to confirm diagnosis, I have complete my steroid treatment and am making (fortunately) a good recovery. I’m getting better, my walking, hands, fatigue and brain are improving but I don’t think that I am ready for work at present (I want to get back ASAP). Without going into details I’m a Advanced Nurse Practitioner and work in a highly stressful, busy and understaffed department within the NHS trust where I have been diagnosed. Any advice to help me would be great.
Also I have my first appointment with the MS Nurse Specialist next week, I don’t know what to expect. What should I ask? Hat follow up should I have, what referrals to other specialists, What about DMD treatment? What about follow up?
I know this sounds ridiculous but this personal experience is outside of my professional experience. I would be grateful for any advice, guidance, support or questions that I should ask, thank you in advance.
Your job sounds stressful and stress is no good at all for MS. I gave up my management position and took a lower level and less stressful position instead. Best decision I ever made. I’m not saying for one second you should quit your job, I’m just advising you don’t underestimate the impact stress can have on MS. That’s all I can say really, hopefully others will chime in with more advice. X
Hi, sorry to hear of your diagnosis. Barts MS in London think MS should be treated early and aggressively, neurologists in other areas of the UK may not follow this. The DMD’s Barts would generally suggest are the tablets and infusions. The injectable DMD’s are not so effective.
The MS Trust Decisions website is helpful for considering the different DMD’s.
The Barts MS Blog is run by MS neuro Prof G and the team, they blog post daily on MS research, changes to MS treatment guidelines etc. I find it very useful to learn about MS and treatments.
Hi KT201, I understand your concerns. I was head of Neurophysiology when I got transverse myelitis 17 years ago, and entered the magical (!) world of MS. Suddenly changing from staff to patent is quite a shock. At the time I wasn’t referred to Occupational Health - things were a bit different then - but when I finally was, I found them extremely helpful. They should be able to assess your working practices and possibly suggest modifications which may help you. I never felt they were trying to push me out, or get me back to work too early; quite the opposite in fact. I can only speak for my own hospital and position, and yours may be different of course, but I hope not. Tell them how you’re feeling, and don’t let anyone make you feel bad about being on sick leave. I frequently went back to work too and it’s a big mistake which helps no-one, least of all you. Hope things go well for you.
Avoid stress as if it is a monkey with a shotgun - sure it may not impact you, but let’s face it, the odds are not in your favour of getting away unscathed!
Get on a DMD right fekkin now! The sooner the better. Do not allow time to cause the probability of your next relapse being the one that ends your current, preferred lifestyle to increase. You will not be prescribed a cure, but you will gain an investment towards a healthier future, longer into your life!
To help expand on nugget #2, i would recommend this resource:
Thank you all for your helpful advice, I’ve taken it all on board. My contact with occupational health went well yesterday, so far so good. Also I intend to prepare a list of questions and do my homework with regards to DMDs in preparation for next weeks meeting with the MS nurse. I think that good research with regards to the efficacy and side effects will help my drive to start DMDs straight away. Thanks again it’s really great to be able to get information from expert ‘patients’.