Last reply 1 month ago

Hello all. This is my first post. I look on here all the time though,it’s really helped me. I don’t feel like I’m on my own and alone. It’s been a scary 2 years. I got diagnosed in 2017. Prior to that I suffered loss of vision in my one eye 4 years ago and nothing was done. 2 years ago i suffered pins and needles in my legs really bad so the doctor referred me for a MRI scan. Results came back and it said finding likely consistent with ms. Went on to have lumbar puncture & the eye test. When saw the neurologist he said you have MS. At the time he said I didn’t need medication,I have suffered for the last 2 years with on going symptoms. I then went for another MRI scan in November,got results back a week ago and now I need an infusion. My MS is highly active. So I’m considering lemtrada. I’m really nervous . I’m 33 and think has anyone else got highly active MS and went on to have lemtrada? Did it help? It feels like every day is a bad day my symptoms are consistent. I’m a mother of two beautiful boys but I feel it’s not fair on them as I have no energy.
I’m just hoping lemtrada will really help me.
Thankyou for reading XX

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4 months ago

Hi @lushy .

You have to question a Neuro, who tells you that you have MS and don’t need treatment and then two years later tells you that it’s highly active! But, that’s all history now and he’s taking it seriously now.

Lemtrada, like all of the MS medications, is a powerful drug. But MS can be a debilitating condition, so it needs to be hit hard with the best weapons at our disposal.

Lemtrada is an Immune Reconstitution Therapy, meaning it allows your immune system to be rebuilt, without the MS. And, without the MS attacking you, your body has a chance to effect repairs to the damage already done. And you have age on your side in this respect.

Check out the previous discussions on Lemtrada. They can be easily accessed by selecting the “Lemtrada” tag that has been automatically added to the foot of your post above.

4 months ago

Hi stumble, thankyou for messaging me. Fingers crossed when I do have it, it slows everything down and my MS becomes less active. The last few days have been alwful with tingling, numbness & weakness in my arms and stiffness is my legs. I saw the MS nurse last Thursday, who was going to give me steroids but changed her mind and told me to take Amitriptyline. I am still suffering from my symptoms very bad and feel let down. I’m not getting listened to by professionals like MS nurse. I feel like they are not interested in what I have to say and has been an on going battle for over two years. I also feel neglected by the neurologist I first saw, three times and he was adamant I have no trace of MS.
I’m sick of moaning but I feel let down.

4 months ago

@lushy , I feel it is important to put the past behind you. It can’t be changed now, so look to the future.

Your MS Nurse has decided that your sensory symptoms aren’t a relapse, or worthy of a course of Steroids. They like to keep Steroids available to treat life-impacting relapses, affecting mobility or vision. The Amitriptyline should help. But, don’t take it too late in the day. No later than 12 hours before you intend to get up the next day. This should allow you to avoid any drowsiness the next day.

You might want to have a look through our @tracyd ‘s blog of her Lemtrada experience for some advice on preparing for this treatment :-

4 months ago

Thankyou stumbler.
I will have look 🙂

4 months ago

Hello @lushy, I was diagnosed in 2017 too, so appreciate all you’ve been through in that time. It’s unfortunate yes, but you have to focus on looking forward now and thinking about what you wan, what you deserve. It’s tough, but we have to be our own agents with this thing. Once you get a DMD sorted out, hopefully, other things will start falling into place for you x

3 months ago

@lushy. Hi I was also diagnosed 2017 after years of symptoms. I had lemtrada round 1 in June 2017 and round 2 in 2018. It has been my miracle. 😁 you have a friend request feel free to message me for any info xxx

3 months ago

Hi vixen and leanne12. Thankyou for your replys and some good advice. Hopefully I will have meds asap. Anything to stop feeling like this and slow it down . Hopefully 2019 is going to be a good year 🙂 and best things come to those who wait. Xx

3 months ago

I had r1 of Lemtrada aug 2018 n have to say the improvements on me have been great n know it was the best choice I made, just with us all being different what’s good for person might not be for another xxx

3 months ago

Hi zarah, it just seems like I’ve been passed around from one neurologist to the next and my MS nurse seems so laid back . My MS is active and all i want is so be put on DMD sooner rather than later.
I really hope lemtrada works for me,When they decide to get into gear.
Thankyou for your response. I’m so grateful to here how you all have seen a difference after having lemtrada. Thankyou xx 🙂

1 month ago

So sorry I didn’t see the tag in this or that I’ve been so rubbish not being on here for ages.
Lem world has been awesome for me, happy to talk if you need someone xx

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