@TJLooney 

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TJLooney

Recently Diagnosed - RRMS

Hi there, Just looking for some other peoples experiences but I know everyone's is different. I was diagnosed in April 2020 with RRMS - they thought I suffered a stroke but after an MRI they suspected MS. I was waiting for the neuro appointment and could not cope with the fatigue in my legs and a loss of balance when walking. I was admitted to hospital, lumbar puncture done and started a course of steroids for 3 days and then went home (Late April 2020) In October, I will be having my 6th infusion of Tysabri but I feel like it is not working. I am doing a self build and continued working on it from late May. The fatigue has never left, I get terrible nerve pain in the soles of my feet, struggle with my fingers and arms after a days work. I am not one to sit around - never have been. In August I was advised to step back from everything from my GP. All I did for 14 days was go to work (office work) but the fatigue has still not left!!! I feel like the Tysabri is not working and I am getting progressively worse. Neuro will not bring my appointment forward either - I am extremely frustrated at the moment - limiting myself to a days work on a Saturday at the house. Going out of my mind! Has anyone on here, that was diagnosed with RRMS progressed quickly to SPMS or PPMS that quickly! Genuinely living in fear and half thinking of making the house more accessible while I can. So unsure of everything at the moment :( TIA T.J
@jj5sim

Hi @jtlooney Sorry to hear you are struggling. I’m on tysabri have been for 5 years. As a a treatment it’s meant to stop more damage to your brain essentially. It won’t stop any neurotic pain in your feet Or help with fatigue. Maybe speak to your dr about neurotic pain relief of which there are numerous medications for. Somebody else might recommend something for the fatigue but sadly I haven’t found anything that gets rid of it completely. If I’m really struggling with fatigue a couple of squares of dark chocolate perks me up to get me through another couple hours. I am still RRMS so I can’t comment on people’s progression time but if you are concerned you should maybe speak to your ms nurses at your next infusion for some clarification. They will also be able to speak to your neuro for you. I am not one to stop either so I feel your pain but sometimes I have to just take it easy for a couple days to recover and then I’m good to go again. Good luck

@Highlander

@tjlooney Hi welcome to the club... Don't use Tysabri but if you use the magnifying glass top left and search for it you'll find loads of other posts made about it. Hopefully you'll get an appointment soon with your neuro. But don't run yourself into the deck, listen to your body and rest when you need it, or believe me, it'll come back and knock you on your arse for twice as long. Welcome to your new normal I'm afraid.