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Newly diagnosed

Hello all,

Just using this as a space to get my story out really :). I’m 25 years old and was fully diagnosed with RRMS in November of 2017. In January 2017 I got a lot of numbness in my arm like I’d slept on it funny. After a few months of “just try some ibuprofen, maybe it’s a trapped nerve”, I finally had an MRI scan.

The MRI showed some lesions on the brain and that’s all my GP could offer. This shook me quite a bit. My grandad stepped in and paid for a private consultancy so we’d get seen quicker. Seeing as at that point I only had a numb arm and Lhermitte’s sign he was hopeful that it’d clear up and sent me away with a prescription for some steroids.

I enjoyed a good few months of just slight numbness in my right arm (it’s never fully cleared), until it got a lot worse. I got stiffness in my right hand, right leg and numbness from the waist down. This happened just before I had a neurology appointment (who ended up being the same doctor from the private clinic) who thought this looked more like MS. More steroids and an MRI were ordered.

Then November came and I saw my neurologist. He was very forward in his responses which I felt was very helpful. New lesions were found, and the MS appeared to be active (so my third dose of steroids for the year!). After giving him an account of my year he felt I’d shown at least 4 or 5 relapses. This has gone up once more as a pretty strong cold has left me in a relapse at the moment with a lot of numbness. I’m used to it but my stomach feels weird and tight…but it might just be the morale boost I need to lose a bit of weight! They scheduled my MS nurses appointment (which is on Monday), and are requesting I be put forward for Tysabri or Lemtrada.

I have seen an MS nurse prior to my scheduled appointment because of this current relapse. I had a call today after seeing them for some blood tests to see if I could have some steroids for the relapse, but we’re waiting it out to see if the fever had contributed to the current relapse.

The phone service and MS nurses I’ve met so far have been great and I really appreciate the NHS for this!

I’ve been unable to work (I work in the NHS as a care assistant) which has been a bit of a sting, however I have a fantastic support network of friends and family. I’m going strong currently but am thinking of reaching out more to local support groups etc. I have a feeling my nurse meeting on Monday will be quite hard as we’ll be going over everything to do with the disease. Luckily I am quite clued up having studied neuroscience, but it’s still scary none the less.

So that’s me!

Hello Beta

What a year. And at the age of 25 it’s a big thing to be diagnosed with MS. And for it to be this active.

But it sounds like you have a good neurologist, and to be given either Lemtrada or Tysabri from the off is a good thing. Both are great drugs. And although they can both come with side effects, they are excellent DMDs.

I should think that having a bit more knowledge about MS and the nervous system generally helps on the one hand, but also adds to the fear factor on the other.

Have a look at https://shift.ms/ there are a lot more people who’ve had in particular Lemtrada on that forum.

Best of luck with your decision. And although you seem quite reasonable and accepting of the diagnosis, when you feel the need to rant and complain about it, or want help at all, come back and talk to us.

Sue

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Hi, I’m sorry to hear about this that’s happened to you. I’m 28 with RRMS and I was diagnosed at 16. It’s strange how every single individual is affected differently. I’ve never had the symptoms you described! I won’t babble on anyway, I’m always happy to chat about story’s etc Take care