melinda_kaur_sangha 26/05/17
Last reply 8 months ago
Which DMD to choose??

Morning all, hope you are all feeling well on this bright sunny morning πŸ™‚

This is my first post so sorry for the sloppiness πŸ™‚

I met with my consultant last week and he has told me that my December MRI showed activity on the brain. I have not been taking any medication since September 2015 as me and my husband wanted to try to get pregnant and have now been advised I should be on something. He seemed keen for me to go on Lemtrada but gave me other options such as Tysabri and Gilenya. So Tuesday I made the decision after looking into all 3 (well as much as I could in a day) to go with Lemtrada. I called my MS nurse and told her that I wanted to go down this route but she seemed quite shocked that I made this decision so fast. I just wondered if anyone else made the decision just as fast and whether you wished you did more research before making your choice?

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molineux1047
9 months ago

Hi @melinda_kaur_sangha my post is just below yours and I think we’re asking similar questions. What symptoms have you had or relapses since you were diagnosed in 2012? Its interesting to see how different consultants approach what they recommend


melinda_kaur_sangha
9 months ago

Hi @molineux1047, I had my first relapse in 2011, my right hand stopped working I couldn’t hold a drink, write at work and then the numbness started just in my right arm, they sent me for an MRI of my spine (not my brain) and put it down to wear and tear of my spine. It wasn’t until 2012 when I fainted and banged my head that they sent me to my optician as the vision in my left eye was blurry (optic neuritis) and then for a brain and spine MRI where they picked up MS. I started Avonex about 2/3 months after being diagnosed which I stayed on until September 2015- tbh it was working well I didn’t feel like I was relapsing and I’m sure I had an MRI in 2014 which showed little or no activity. Since coming of avonex my moods have decreased generally low alot of the time, majorly fatigued, the numbness is now on both sides left and right and I feel it occasionally in my legs. Since being diagnosed with MS I have also added IBS and underactive Thyroid to my list which could also explain alot of the symptoms.


ashory
9 months ago

I made my decision very quickly too. I was given the options, went home and researched them all and decided on Lemtrada the same night.

As long as you have done your research and are comfortable with your decision then go for it.

I was officially diagnosed in Mar/April of 2016 and was in my first round of Lemtrada May 2016. My Feb 2016 MRI which they used to diagnose me was highly active and had ALOT of lesions on both my spine and brain. My post Lemtrada MRI from December 2016 showed no new lesions and no active lesions. Yippee!

I have no regrets, not only do I have great outcomes to this point but I know I hit this as hard as I could as fast as I could.

Maybe you are more of a logical thinker which enabled you to come to your conclusion faster than if you were driven by emotions? I think that’s why I came to my decision so quickly.


melinda_kaur_sangha
9 months ago

Thank you @ashory that completely makes sense.

Aw its nice to hear a positive outcome too, I am so pleased for you πŸ™‚


daniel2025
8 months ago

I made my decision in the ms nurses office. My ms was highly active and on day one of meeting her she asked if I had decided to try any treatments or not saying she was willing to respect my decision if I didn’t want to go ahead. I told her on day 1 I’m getting whatever is offered to me as I have children and want to try to stay as normal as possible for as long as possible. She did a blood test to check if trysabri was a option. She told me that the neurologist was keen on trysabri or lemtrada. Anyway trysabri was a no go because of been jv positive. The ms nurse said I had the highest score the hospital has ever seen so trysabri was out. So I excepted lemtrada I decided on day one I wanted something done and excepted what my neurologist said she felt was my best and only choice of treatments. However they again said it’s completely up to me but I wanted to stop relapsing and so far so good.


melinda_kaur_sangha
8 months ago

Thank you @daniel2025 for sharing your experience with me, I really appreciate it πŸ˜ƒ


tracyd
8 months ago

@melinda_kaur_sangha

I’ve pinched this from the start of my blog about why I chose lemtrada ….

So why would I choose Lemtrada?

I’ve been asked why I would have this as the first treatment. Some reasons are practical; there are side effects to other drugs which make them unsuitable for me. Also my MS is just too aggressive for any other treatment to be effective enough for me. I’m relapsing frighteningly often – 2/3 relapses a year is classed as aggressive I’ve had 6 in 6 months and going from 1 relapse a month to every other month or every 3rd month just isn’t enough; not when it’s taking my legs and my eyes.

I saw my neurologist and went through the usual suspects of choices, Beta-Interferon, Tysabri or Tecfidera, all of which could slow down relapsing but reducing the relapses even by 75% a year wasn’t enough. YAY only 4 a year, still more than the highly aggressive classification, Erm NO I don’t think so, that just isn’t an acceptable statistic for me.

I’m naturally a fighter, I don’t give up, I don’t give in and a swift and effective brutal attack is always my preferred method of dealing with a problem. Lemtrada for me represents 2 years of MS sitting in a corner battered and bleeding, holding its balls unable to move and crying for its mummy. It certainly won’t be nibbling at my central nervous system like a greedy person in a sweet shop and taking more and more from me each bite.

I’m now just over a year post round 2 I’m clinically NEDA (No Evidence Disease Activity) confirmed by MRI’s my MS symptoms have all faded away and life is normal again.

Unless I ever relapse again I’m done with this MS nonsense, and if that ever changes I’ll kick it in the balls again xxx


melinda_kaur_sangha
8 months ago

Oh wow @tracyd thats Fantastic. You keep hold of those balls, lol.

I saw my MS nurse yesterday, had all the checks and signed on the dotted line. All being well I will be able to start Lemtrada within in the next 6 weeks.

Time to get this horrible disease under control πŸ™‚


tracyd
8 months ago

@melinda_kaur_sangha

You have a friend request, if you want to talk or just put the world to rights I’m happy to share contact details.

In the meantime the blog details and the one for the book version with finds coming here to SHIFT are on my profile xxx


melinda_kaur_sangha
8 months ago

Thats great thanks @tracyd much appreciated xx

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