Relapse?
Diagnosed in May after weakness in my left leg (history of going blind in one eye and similar resolving issues with the same leg over a few years).
Weakness mostly resolved, even able to run again a bit for a few months until Monday of last week when my leg suddenly started being weak again. Not lifting high enough to get up stairs reliably, walking speed now about half what it was, it basically got worse over the week, gone from being an issue when walking outside to being an issue walking across the room.
Emailed MS nurses over the week, no reply until a phonecall today.
I asked if this is a relapse, told well no because you haven’t been on treatment long enough, everyone has exacerbations you probably have an infection, get your urine checked. It’s not a relapse unless it’s a new symptom, since I originally had leg weakness if it come back or gets worse that’s not a relapse, and we don’t call them that anyway 🙄 long as you’re managing to go to work…we’ll I’m not… oh well get your urine checked there’s nothing else.
Ok just checking incase the fact I’m struggling with stairs when I never have is something that need steroids…oh no we wouldn’t give steroid to anyone because Covid is on the rise and people will get sick with it.
Have had no advice on when I should or shouldn’t seek advice (I’m now thinking never) and my take away is basically don’t call unless I go blind? But maybe not then since I previously did and it wouldn’t be a new symptom?
I’m probably being unfair but after waiting a week for a response that wasn’t helpful this morning and I’m basically left with the impression there’s no help no matter what so just get on with it.
That isn't helpful. I had similar last year in November. I couldn't walk, struggled up the stairs, etc. Was told it was an exacerbation. This went on three months and left me very depressed. When I had my MRI in May, hey presto! New lesions! I think its so difficult for them, as well as us, to know the difference. Bless you. If you feel strongly it is, make the call and explain how you're feeling. Don't let them push you aside. I certainly won't anymore. We have to advocate for ourselves. I hope you feel better soon x
I also agree with the comment about being assertive and explaining your concern about how you are being treated. I've had to do it in the past and so have my parents who have both been cancer patients and also had to stand their ground and remind the staff that they were human beings as well as just another patient on the list. I believe the staff are busy and in some cases overworked etc. A somewhat assertive but human push helps get things moving I find. Sorry to hear about your leg. Im not in the diagnosed camp but I have been seeing some major changes in my mobility too involving my leg. Not being able to lift high enough or bend to put socks on is a new one. Weak when walking and just feeling disconnected. I suppose it's a nerve issue. Some days I have to walk around the house with a stick but as my fantastic GP always says to me "it's just you're anxiety.....don't worry". My GP would say it was my anxiety if I walked in with an RPG hanging out of my butt and two arms missing. Try and stay as mobile as you can but also rest it. Glad you got that run in though. Must have felt great! Good on ya for getting out there.