Hi guys,
I’m a year in to my diagnosis and still have much to learn. I’m due my second (first full) dose of Ocrevus in April. I work full time and study part time, and in (relatively) good health. My issue is, maybe once a week or once every 2 weeks, I get symptoms that knock me off my feet for 24 hours. I Know I should be grateful that its only occasionally and for a short period, but it looks bad at work - having the odd day off. From what I’ve read it sounds like pseudo relapse/exacerbation, but my nurse says its not normal to have so many and what I’m having is just worsening of my MS symptoms, and I need to find out what my triggers are.
The symptoms I have are things like full body pain (aches and/or shooting), fatigue, terrible pins and needles (I have constant ‘buzzing’ in my feet everyday), headaches and tinnitus. I’m usually back on my feet within 24 hours.
Does anyone else have experience of these episodes? I’m worried its all in my head.
Many thanks,
Donna
I must say, that does not chime with my experience. My RRMS was active from the start, and relapses always meant business, but I do not recognise use the pattern you describe. I wonder whether you are just chronically over-extending your resources by trying to work f/t and study as well as studying p/t? Is it possible that your body just keeps pulling the emergency cord because you are constantly going overdrawn on your energy budget? When you think about what your nurse said about triggers, what comes up? I really hope you figure something out.
Alison
1 Like
Hi hun
What I can relate to here is the constant pins and needles and buzzing in legs and feet. Pseudo exacerbation is possible due to various factors including viruses and temperatures etc. However I’ve been told many times by my MS team that it is most likely down to my first major relapse that I’ve never fully recovered from. Once the nerves are damaged it is very likely they won’t fully repair themselves, even with medication. It’s something I have learned to live with. Stay positive, look after yourself and know that you have a huge amount of support on here xxx
1 Like
Also don’t worry about time off at work, you can’t be penalised because of time off due to MS, it’s illegal. If you haven’t already done so I would recommend telling your employer as you will be protected legally. I told mine at the very beginning, I’ve had a lot of sick days because of MS and I’m still there full time 10 years later xx
1 Like
I agree with Alison.
I think your over doing it. you have a full on life. I have PPMS so its different to some extent as i never have relapses but i do have periods of buzzing and more pain, tinnitus and stuff and i call it MS fatigue. I know i have pushed myself too much.
Its like your body saying, “ok your going to rest BLAM”! and the ms takes over its own care.
xx
2 Likes
Thank you all for your sharing your experiences and for your kind support. I thought of symptoms in terms of relapses and recovery, I think I should get used to my MS symptoms.
Thank you again!
xxx
1 Like
That’s not strictly true I’m afraid. There can come a time when an employer can ill health retire you on the grounds that you are no longer capable of fulfilling your job contract.
1 Like