DMD’s for new diagnosis & mental health
Hello, I am newly diagnosed with MS & would like some perspective on treatments & mental health resources.
Some background:
I’ve been incredibly fortunate that from contacting my GP about symptoms and being admitted to hospital for tests (incl MRI & lumbar) then discharged from hospital with steroids was super fast (a week). The symptoms I have had are optic neuritis in the left eye (improving) & numbness in the entire lower half of my body (improved vastly in last few days - now just in my feet).
2/3 months prior I had blurred vision which I had put down to eye strain but I’m told was a previous attack. And about a year ago I had numbness in my right arm for a couple of days which I put down to my panic attacks, but there is an old lesion on my spine where they would expect numbness like that to show. I have multiple lesions in different layers of the brain & a couple on my spine so it seems I’ve had it for a while.
Because of these events, my consultant is proposing to put me on either of the following: Lemtrada, Ocrevus, Tysabri or Gilenya. Does anyone have experience with any of these? I feel like it’s pretty intense since I’m newly diagnosed & I’ve read some people don’t start treatment for years!
I am incredibly grateful that I was diagnosed so quickly but it was super unexpected and has thrown me. Does anyone have any good resources to help with the mental health side of things?
Hi Stephanie :) So sorry to hear of you diagnosis! Ive just been diagnosed last month but really interesting reading your post as I have just recovered from a similar ms episode (left eye and bottom half of the body still got it in feet as well l) I faced a similar decision to you and was told that because I'm 20 and got diagnosed quickly (within a month) I should take advantage of the infusion treatments as well to try and prevent future attacks as soon as possible! I've chosen to start tysabri but it has not been a decision I've taken lightly due to the pml risk. With the mental health thing Id say talk to your ms nurse as there is loads of support they can offer you! I spoke to my ms nurse and now see a therapist once a week on zoom and also have people I can speak to at my local MS therapy centre! but this forum has also been great :)
Hi @Stephanie and welcome to the club no one wants to be a member of 😉 It’s great that your team is so proactive re treatment and that you seem happy with them. If you want help with choosing your DMD there’s a very useful comparison thing on the MS Trust website (think it’s called MS Decisions) where you can compare DMDS. I’d also recommend having a look at Dr Aaron Boster’s YouTube channel - he’s an American MS specialist who has posted lots of short and very informative videos including ones about DMDs. Mental health wise, you could check out the OMS website (Overcoming MS) for general lifestyle tips and how important meditation is. Diagnosis is a shock and there’s a certain amount of grieving to do - many say it takes a year to wrap your head round it. I’d say be really kind to yourself, pamper yourself and try not to get too stressed if possible. Using Shift MS is great too - we will all understand what you’re going through so you can come and vent, shout, ask for advice, say if you’re feeling down and be heard and accepted. Take care 🤗