Hi guys,
I’m afraid I’m feeling very sorry for myself today. I think since September Ive been suffering from a relapse, symptoms being my feet feel more numb than before and at times I’m feeling a bit wobbly on my feet. My calves feel stiffer then before, generally once I got going they were ok, but not so much now. My thighs seem really achey and stiff, especially when walking, and the middle of my lower back is so tight it feels light I am fighting to walk upright. Last week I managed to twinge my back , as I was sitting down just from a twisting motion and thats been really uncomfortable but does seem to be improving. At one point I could hardly stand up straight. It’s been 18 months since my diagnosis and I’ve been on Tecfidera for 8 months, I have to say I feel so down and despondent, I cant bear to imagine how this is going to feel in the future.
Any words of advise would be massively welcome,.
Thanks you lovely people…x
First relapse since dx is not fun. It’s that realisation that (removed by moderator)shit’s just got real, isn’t it? If your meds aren’t keeping a lid on your MS, you might need something stronger. Keep your MS team in the loop even if you think there’s not much they can do for you right now. They need an up to date picture of how your MS is behaving. I am sorry you’re having a rotten time.
Hello Olliekins
You do sound very down and low spirited. As Alison said, if your relapses are coming in spite of being on Tecfidera, maybe you should discuss DMD options and see if you can get a more effective drug?
I always found that relapses took a very long time to recover from. So a couple of months isn’t that long (it feels like it at the time I know …).
Do you have access to steroids when starting a relapse? The aim is to shorten the time it takes for a relapse to remit. They will only work when taken right at the start of a relapse, so if your new symptoms are heralding a brand new relapse, it might be worth considering. But if the September relapse is just loitering and creating new problems, then best not.
Maybe have a chat to your MS nurse if possible. See if you can get hold of him/her very soon. You can then talk about relapses, different DMDs, possible steroids, even your dark and depressed mood. It’s also a good idea to have a urine sample tested at your GP surgery. An infection can often masquerade as a relapse (you need a wee sample tested before taking high dose steroids anyway - steroids could make an existing infection go utterly bananas).
Sometimes just talking over what’s going on for you helps.
Sue
Sorry to hear you’re having a tough time of it. I would say try not to jump to conclusions about it being a relapse until you’ve seen your neuro or spoken with your nurse. I’ve had a couple of patches of bad symptoms and have been reassured they have not been a relapse. I’m not honestly sure how they decide, but I think my team err on the side of unless it definitely is, then it isn’t if you see what I mean?
Not sure if that’s helpful or not but just wanted to say please don’t think the worst before speaking with your team, it could be the colder weather or something simple like that aggravating things x x x
I came off Tecfidera for similar reasons, although everyone is different. Since day one I’ve had pins and needles in my feet, body is stiff, every other day it was either a burning sensation in my thighs or around knees…
My MS nurse at the time told me that Tecfidera was only a trial drug as was originally used to fight psoriasis…
It didn’t suit me at all, my skin and breathing got worse (as suffer from eczema and asthma),
I’ve not been on any meds for around 18 months, although with specialist consultation coming up the end of the month I’ve researched into what I’d like to try going forward…
Sorry to ramble
Hello sweetheart.
No fun is it when all this is going on? You’ve not mentioned baclofen…it is a pretty good med for stiffness in MS.
But just be careful, as higher doses can cause falls as they weaken the muscles. Speak to your MS nurse about this…to see if they think it may help you.
Thinking about the future can be very unsettling, I know.
Hang in there chick.
Boudsxx
Thanks guys for your advice, it’s really appreciated.
Since my post Ive coincidentally been for my MRI scan, I saw a Chiropractor about my back and it felt a lot better yesterday, but I had another twinge overnight and it’s gone back a step. I’m due to go back to the Chiro on Wednesday and hopefully that will help. I spoke with my MS nurse and she said as my symptoms are all sensory they wouldn’t give me any steroids. I will get the results next week for the MRI and hopefully she’d a bit of light as to whether it is a relapse to not!! Thanks for talking the time to respond. Xx