Last reply 8 months ago
Just some advice

Hi everyone, I was diagnosed with MS relapse and remmiting in Nov 2017 although they think I’ve had it longer. I’ve also been diagnosed as having Idiopathic Intercranalial Hypertension as well. Since Nov I have already relapsed and the IIH condition is really getting me down, I’m so dizzy that I’m on antisickness tablets and can’t walk unaided.

The consultant said never in his life has he had the same 2 conditions in one person.
I will start Treatment for the ms on the 12th Feb, but at present I’m stuck in my bed as was discharged from hospital as they thought I had a bigger chance of catching the cold or the flu in hospital than I would at home.
I’m very Scared of treatment starting and have my IIH consultant 2moro.
I’m feeling rather lonely and worry about being left on my own today as everyone has work to go.

Hopefully the future will improve for me.

Thank you for reading
Shannon x

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zoeb
8 months ago

Morning,
Welcome to Shift 🙂
It’s a scary time when you’re first diagnosed, I remember it well. I can understand it’s even more nerve wracking for you as you’ve got the two conditions to deal with.

It’s great you’re starting on treatment – if you know the name of the treatment you’ll be going on to, why not reach out to other MSers on here with the same medication type? You can find out their experiences and ask some questions – maybe they’ll be able to put your mind at rest and give you some tips.

Shift also has a buddy scheme – you could sign yourself up to have a buddy (someone who’s been diagnosed for longer) who might be able to chat to you about some of your worries and fears. We’ve all been through it, and can offer support to one another.

I know that these early stages can make you feel quite lonely, but we are all here for you.

Zoe


shazybabe86
8 months ago

Thank you

It means you have been nice enough to get back to me.
I’m starting treatment on the Lamdrada on Monday so hopefully I’ll manage to be able to walk in there rather than be stuck on a wheelchair.

I am now the third person in my Family been diagnosed with this condition.
My Mother was tested but has Trigeminal neuralgia instead.

Think it spoiled my Xmas and I’m even struggling to even hold a conversation together sometimes.

Many thanks
Shannon
Xx


zoeb
8 months ago

They do say that these types of illness run in families. Good luck starting lemtrada – you might find some lemtrada support groups on Facebook – lots of MSers are on there sharing their experiences.

I know a few people who have had lemtrada and they have had such a positive experience. One of my friends has said that they don’t even feel like they have ms anymore. It’s been such a life saver for them. They did mention that they felt really really tired for a good few months after the first infusion.

Zoe


shazybabe86
8 months ago

That is what my mum has started saying that the initial feeling after treatment was given that it would take a while to get back on my on my feet.

Thank you very much for everything you have said.

Shannon.

Xxx


stumbler
8 months ago

Hi @shazybabe86 and welcome.

Good advice above. Just go easy on yourself. You have a lot to consider and you just need time to process it all.

I have just looked up Idiopathic Intracranial Hypertension (IIH) and it seems that it has an indefinite cause. There’s a list of suggested causes here :-

http://www.iih.org.uk/images/MEDICAL%20CONDITION.pdf

Whilst MS isn’t on the list, there is some overlap with suggested causes of MS, e.g. Gluten Intolerance, Lactose Intolerance and Vitamin D deficiency.

Starting treatment for your MS should be regarded as you taking back some control of your body, so there are reasons to be positive.

And, never feel alone, as you’ve joined this community so have acquired quite a number of new friends. 😉


shazybabe86
8 months ago

Aw thank you so much.

I have also finally posted to my Facebook as well and been rather honest to give me control a bit as well.
. already on VD3 for that deficiency which it has helped to pick me up slightly.

I think you are right about tackling one at a time as well, hopefully I will be able to walk in that infusion room with my head up tall and start to complete this and move on.

Thank you very much for getting back to me

Shannon.
Xxx


lilbird
8 months ago

Hi there @shazybabe86 sounds like your having a thoroughly rubbish run of things so just wanted to send you some virtual hugs & general positive vibes 😊 It’s good that you’re all set for Lemtrada, I’ve been there so if you have any specific questions feel free to ask & I’ll tell all the bits I can remember 😉


shazybabe86
8 months ago

Aw thank you.

Yeah lemtrada seemed the best choice for me, not looking forward to being stuck in a.chair for hours on end
What was Ur experience of it?

Xxx


lilbird
8 months ago

Hi shazybabe86

I found the whole Lem experience surprisingly uplifting, don’t get me wrong it was exhausting too, I think just the act of taking back some control was a huge emotional boost.

For round 1 I was an in patient which meant trying to sleep in a hospital environment- turns out they’re kind of noisy & this combined with the steroids meant that I slept very little. On top of that the antihistamine floored me so I had little to no energy through the whole process.

Round 2 was easier not only because it is shorter but I was an out patient so had a more comfortable, quieter sleeping situation (& fewer days of antihistamine) even though this was a hotel due to the distance between the hospital & where I live. The chairs were actually pretty great because they adjusted in all directions, think an advanced dentist chair. It’s surprising how quickly the time passes, especially if you take plenty of reading material or other sources of entertainment. That said I didn’t really get much reading in during r2 as there was so much chat with others in the infusion room.

I don’t know what your pain killer situation is with your other health issues but I’d say some paracetamol was definitely necessary for me & hopefully you’ve already started upping your intake of water? If not you need to get on that asap & keep it up. On the last day of r1 I let it slide a little because there was so much else going on & with all the travelling & I soon discovered that was an error due to developing the mother of all headaches, as you already must have big problems in this area, don’t stop drinking the water!! As a bonus (??) of drinking so much you dont really get stuck in your chair for hours as you regularly need to take tricky trips to the loo wheeling your drip stand & trying not to get tangled up & if the system is the same where you’re treated timing them between the 15 min (at first) intervals between the blood presure monitor going off 😊 all good fun x


nella2011
8 months ago

Hi Shannon,
Sorry for taking so long getting back to you, I had the lemtrada/Campath treatment a few years back, and it was the best thing I could have done!
I live in Plymouth too, if ever you want to meet up for cuppa!
Thinking of you
Nell x


shazybabe86
8 months ago

Aw thank you girls,

Yes the lemtrada is defo the way I want to go ahead, I had a major stressful few weeks soon as the 2nd Jan hit, my daughter’s dad was refusing to bring my daughter home. I’m from Scotland and her dad lives there, so it threw my way of positive and healthy feeling I had when the steroids.
Luckily though my daughter is home after many trips to court here and also in Scotland.
Hopefully once I’ve had treatment we can meet up and have a proper girly day,

Just getting my favourite pillow and tablet ready for a binge watching of Netflix while I’m there.
Unfortunately my treatment will start bang on spring half term holidays.
So I’m super excited my mum has booked 2 weeks off from work and is going to watch my girl for me. My Amazing fiance is having time off from work too, so I have lots of ppl rallying around.

Hopefully once this week is over my life can start again

Xxxxxx


aabreu
8 months ago

@shazybabe86
Looks like your in good hands all the way around.
I’ve read amazing things about Lemtrada.
Also, the other issue you have appears to be treatable.
Good luck. God bless.

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