Last reply 2 months ago
Lemtrada, covid and MRI

So at the moment I am about 16 months post r2 of lemtrada, and my MRI was due in April, but it has now been postponed until … further notice…

This gave me immense anxiety and I’ve been having panic attacks for over a month now. I don’t know how to deal with this because even though I appear stable, I feel like I really really need and mri soon to confirm whether I need further treatment or not..

I seriously don’t know how to deal with the fear of anxiety anymore. I am already taking antidepressants and having therapy but ever since this pandemic started it’s not helping much anymore…

Anyone here has some encouraging stories or advice?

Thank you!

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2 months ago

@vivy0511 , check out the recent posts on the virus from @dominics and the Dr Boster videos on his Youtube channel.

This should provide some reassurance regarding any virus vulnerability.

2 months ago

@vivy0511 – The guidance from the experts is that concern exists between 6-12 months after las5t dose. prof G gives a cogent explanation of why the most important thing for the medic is to see your lymphocyte levels at 800 or above.

2 months ago

Hi @vivy0511
There is lots of good news:
1. You have received one of the most effective treatments for MS and have completed both rounds.
2. Your MS appears to be stable, which suggests treatment has done its job.
3. Your doctors are going to double check that and can then advise you as appropriate.
4. Although the use of lemtrada has now been further restricted, as you have had it before then you are allowed more if it is required.
5. You have realised that your mental health is also super important and are taking steps to care for that too.
6. You are taking control by actively looking for encouraging news and advice.

If they did the MRI and found there was activity (which seems unlikely given you are stable), they wouldn’t give you more lemtrada at the moment due to corona virus, unless your MS is making you really poorly (which fortunately it’s not). That would be super stressful. So it is better to wait for the world to calm down, then get the MRI and then there will be an up to date picture to inform any treatment decision. It is not that you will never get the MRI, it’s just you have to pick the time when you will get the most out of it. It’s hard because it is not happening when you had expected it, but try and let it go, just for now. Listen to your body, if things seem stable then chances are they are and that is fabulous.

I’m not sporty at all but have found yoga is good, more for the mental than the physical side. In particular there are some helpful parts about focusing on your breath and using that to anchor your mind when it is trying to race away. If life is getting a bit much I sometimes just go and hide somewhere and do the alternate nostril breathing for a bit. It helps me to calm down and feel more in control.

It’s normal to feel overwhelmed with everything that is going on. But remember, you have all the tools you need to get through this and it will pass. Sending you lots of calm and positive energy x

2 months ago

@clare80 oh my god, thank you so much for your kind words! I’m not really into a great mental state at the moment, but I keep reading and re-reading your comment and it makes me feel better! thank you, keep well x

2 months ago

@vivy0511, no worries, take care and keep breathing!

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