croydepixie 06/05/17
Last reply 8 months ago
Diagnosis.Military.Children.Treatment?

It’s been a whirlwind…

August 2015….Mother is numb down her left side, I take her to the GP as it’s weird. She’s diagnosed with MS after a couple of weeks (what is this thing, we have no idea, quick google, oh right great)

March 2016….We all go on a family holiday and after a swim I’m numb down my left side. I’m in the military, Royal Navy and happy to ignore but after a few weeks of no improvement and an imminent deployment I thought well lets go make a young military medical assistants day with some weird numbness.

March 2017….Shift on a year….2 spine MRI’s, 1 head MRI, multiplie lesions, numbness on the left that recovered, shooting pain in face that recovered and BANG 1 week before my wedding I’m diagnosed with RRMS!

I’m a serving military 26 year old, used to cracking on and having a plan for my life. Despite the lesions, symptoms and diagnosis I still feel like I did 5 years ago (albeit a bit older!)

My husband is also serving military so time to plan to have/try to have children and have treatment is limited.

I have a couple of broad questions that I’d love to open to the floor….

We’re between discussing Lemtrada and Techfidera with my Neuro Consultant (Bristol) is it too soon to go for the hard stuff based on my lack (thankfully) of symptoms or should we just crack on, put off children for 2 years and go for lemtrada (if consultant approved)?

With lemtrada how much home support is needed? My husband is about to deploy for 6 months…if I started treatment would I be moving back home with my parents?! Closest family is them at 2.5 hours drive away.

I would massively appreciate any help. We don’t even know where to start. There is probably a lot of things we haven’t even thought of 😉

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merfield
9 months ago

What a dreadful series of events. All I can offer is sympathy as I’m not on any medication. Hopefully someone else who is on Lemtrada or Techfidera can be more helpful.


ashory
9 months ago

You’ll get many many opinions on this site, some of them stronger than others. I implore you to please, please do your own research before making any decisions and talk with your Drs about all options and where you are with your life.

That being said I am in a similar place in life as you are working planning for the future, kids… I was diagnosed about 14 months ago and am due for my second round of Lemtrada in a few weeks. I based my decisions on the following.

1. It was the most effective treatment available to me at the time. I had just suffered a relaps that left l me with no feeling from the waist down and I knew I wanted to hit this hard and fast.

2. MS symptoms, so you’re numbness, are as a result of damage that has already been done. At this time there are 0 MS drugs that can reverse this damage but many drugs that can slow or stop Further damage which is important to avoiding further symptoms. So In my mind it was better to hit it as hard as possible as soon as possible to avoid as much damage as possible.

3. Risk vs reward. All of the MS drugs can carry some pretty significant potential side effects including Lemtrada but Lemtrada carried the most promising results so if I was going to risk any of the side effects it needed to be for good reason.

4. Impact on lifestyle. I was not interested in daily tablets/injections for the rest of my life or monthly infusions. Lemtrada offered the opportunity to take 6 weeks of my life and hopefully I’ll not have to worry about treatment for a long time. To me there’s no better option because I know I’d forget to take my tablets or injections or they’d get in the way of my life by having to plan around them. With Lemtrada I do have to plan around monthly blood tests but they’re quick and generally if I’m a few days late/early it’s not a huge deal.

5. Most family friendly. I was advised by my neuro that he prefers Lemtrada for women of our age because it is the most suitable for pregnancy. As long as we wait until 3 months after a dose we are able to safely fall pregnant without having to stop treatment.

My first treatment took 1 week and had me out of work for a further 2. I then returned to work full time and was ok gradually getting better. The type of Job you have will impact significantly on your return. If it’s quite physical it will take you longer. I had my partner to help me through the weeks I was home but he did maintain his full time job so I’m fairly confident with careful planning you wouldn’t have to move back to your parents but it might be nice for a few weeks. If you are only a day patient at the hospital and not admitted overnight you’ll need someone to drive you to and from the hospital for each of the 5 days of treatment.

Good luck!


potter
9 months ago

Can you have your Lemtrada treatment close to your parents house and if you can do they have the time to take you to the treatments. If I was younger and Lemtrada was available when I was diagnosed I would have gone that route, especially if I had parents to help. Potter


katy79
9 months ago

Hi @croydepixie,

Sorry to hear of your diagnosis. I received my own last year and received round 1 Lem in August. My symptoms are so mild as to be non existent (I was diagnosised as a result of nothing worse than numb toes!). However, I have numerous brain and spine lesions and wanted to act hard and fast to prevent a more disabling relapse and preserve as much neural reserve as possible.

I’m also 37 and due to get married. Lem feels like the best way of getting protected from further relapses before deciding whether we want children (and without having to worry about rebound relapses by coming off of an on-going treatment to conceive).

Round 1 for me was easy – mild headache and a rash. No post infusion infections or symptom flare-ups. I took two weeks off of work as a precaution (I commute in and out of London everyday) – but was fine and well quickly and back out running etc within that time.

However, everyone is different. Take a look at the Lemtrada, alemtuzumab treatment for MS in the U.K. Facebook group. There are loads of people on there thinking about and going through treatment, and swapping recovery stories (good and bad)

Good luck
X


brunnanburgh937
9 months ago

Try looking up ‘Mutual Support’ they’re a Military MS support charity if you haven’t already hth


tracyd
9 months ago

@croydepixie

My husband’s (ex-army) logic when I was diagnosed was as follows ….

Situation assessment :

Your body is theatre and MS is the hostile
– You are aware of hostile activity
– The number of hostile(s) is unkown
– The hostiles intentions are ‘suspected to be bad’
– The behaviour of the hostile(s) is unpredictable and distuctive
– The timeline for a distructive act by the hostile is unknown
– Collaterol damage is unquantifiable

Response Options :
– Sit back and observe try to ascertain more information
– Build defences to keep the hostile(s) at bay
– Wait until 4am when the hostiles are asleep, call in an airstrike to wipe the hostiles out and follow it up with a clearance detail to pick up any stragglers
– 1 year later you scorched earth the site again just to reinforce the message

Lemtrada is option 3 …. it’s the biggest, baddest weapon in the arsenal it’s a way to clear the enemy out of the field, there are no guarantees they won’t come back that’s why it’s in 2 parts – the T&B Cells are squished twice to make sure they learnt their lesson (think the horribly politically incorrect an sexist – what do you say to a woman with 2 black eyes? Nothing you’ve told her twice already)

You’re being offered a weapon that will allow you to ruthlessly beat the living shit out of it – you might not be able to kill it, but you can hurt it, wound it maim it and slow it down, you can stop it before it has a chance to fully mobilise before it can cause potentially irreversable damage is accumulated in the brain and spine.

It’s an ethical question to protect yourself do you go on the offensive ? declare war on it and teach it who’s boss, or do you leave it alone, not poke it and hope it sleeps long and hard and doesn’t do anything too nasty

Personally I went to war I had lemtrada and my MS is clinically inactive confirmed with regular MRI’s – the symptoms I had aquired before treatment have gone away and life is ‘normal’ again (well as normal as it ever is in my strange little world)

If you need someone to talk to you have a friend request drop me a PM I’m happy to share contact details


croydepixie
8 months ago

I’ll be using all of your very very useful posts tomorrow morning for a boost as I go in to convince my consultant to give me Lem. Thank you all. Wish us luck 🙂


tracyd
8 months ago

@croydepixie

GOOD LUCK !!!!!!

Please let us know how you get on xxx

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