Last reply 1 year ago
Wrong treatment??

I’ve been on tysabri for several months now. At first it helped so much. I was getting a new symptom every few weeks and that changed to having one new symptom in about 5-6 months. However, the past couple of months have been such a struggle! I’m in so much pain and so dizzy and tired all I do all day is sleep or lay around in bed or on the sofa. I’m weak, my hand is numb. Idk things are just getting bad. I’m trying to beg for a course of steroids but what else can I do? I do yoga and light exercises at the gym already.
Any reply would be amazing. Giving advice, finding similarities, a rant, anything.
Thank you.

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1 year ago

Hi @megmeg and welcome.

This does beg the question what started two months ago, which preceded this scenario?

I’d be tempted to have a word with your GP to try and rule out general infections, which might cause a “pseudo-exacerbation”, i.e. blood and urine tests.

Hmmm, “trying to bed for a course of Steroids” suggests you have a very demanding health service up there in Essex. But, seriously, I assume that you’re talking to your MS Nurse about this deterioration?

Otherwise, rest up. This isn’t a sign of weakness, just a strategy to get over this type of situation. If you can, continue with the Yoga and light gym exercises, with the emphasis on moderation.

And, I do hope you managed to get to sleep last night………..

1 year ago

@ megmeg hi and welcome. We are all so different and have different drugs but we’re always here, have a rant, a cry, a celebration, a moan, that’s one of the things we’re here for. You aren’t saying or doing anything we haven’t already said or done ourselves. Some things us old codgers have been doing for years! We, as a rule, after many years have got our fatigue and drug situations sorted, but the nature of the beast being what it is things can change in an instant and is the not knowing that gets most of us. We have learnt to still make plans be it daily, weekly, monthly but to tweak if necessary based on our condition at the time. Keep fighting🥊🤞😜

1 year ago

@stumbler that was a really great reply, thank you. That helped a lot 🙂 xoxo

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