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I have been told I have MS and epilepsy

(25 Posts)
INeedToEat Mon 18-Sep-17 22:47:31

I've been trying not to use Google. I've been told tonight that I have MS and epilepsy. Just wanted to know how people cope with this and what I can expect next? Thanks in advance.

PrancingQueen Mon 18-Sep-17 22:56:32

Sorry to hear this OP. Presumably it was a neurologist who told you?
You should have follow up appointments both with the neurologist and nurse specialists - they will be able to advise you. Try also the MS Society for more information flowers

shebebutlittle Mon 18-Sep-17 22:57:46

Sorry to hear your news sad You must be very shocked.

Someone with more experience than me will come along soon, but my brother has epilepsy which is entirely controlled. You wouldn't know he had it unless he told you. Hopefully once you have the correct medication, yours will be the same.

uglyflowers Mon 18-Sep-17 22:59:36

I'm really sorry. That is bloody shit. My son has epilepsy so I know that 70% of people can go on to get total control on meds and have no seizures.Don't have any baths without someone in the room and get a seizure pillow for your bed. Consider taking a fish oil and a magnesium supplement as these can help control seizures too.

Toddlerteaplease Mon 18-Sep-17 23:09:14

I've got MS. It's really not the end of the world. Honestly it really isn't. There are very effective treatments available now. I still work full time as a nurse on a very busy children's ward. It is harder going sometimes. But being stubborn and refusing to let it take over helps. Please PM me if you like. Sorry that you've been given two life changing diagnoses in one day. flowers

INeedToEat Tue 19-Sep-17 06:21:13

Thanks for the responses. Will I ever be allowed to drive again ?

I think I'm ok with the news (Was seen by a private neurologist yesterday as the NHS was taking ages). I'm scared to read too much about MS. I work full time and it's good to know that i can probably continue doing that - thank you. I'm starting the anti convolution meds today so hopefully the fits will be under control at least.

It's just all a.little.scary.

Toddlerteaplease Tue 19-Sep-17 08:30:57

You'll probably find it'll hit you in a few days tie. I thought I was ok but then it sunk in a few days later. You'll find that just about everyone 'knows someone with MS. It'll drive you mad.

INeedToEat Tue 19-Sep-17 10:41:12

Ha yes I've already been discovering that Toddler.

I'm prepared, I think. I was warned a few weeks ago because of my MRI scan results.
I believe epilepsy brought on my MS is very rare. I think I'm more scared of the seizures than the MS, for now anyway.

JsOtherHalf Tue 19-Sep-17 13:16:36

What medication have you been prescribed for your epilepsy? Have you plans for children?

INeedToEat Wed 20-Sep-17 11:38:59

I'm on Lamotrigine. I have 2 children who are older so are fine.

During my 'fits' i.dont actually go unconscious - I questioned the consultant why he was calling it epilepsy as I always thought you went unconscious with them. He said that epilepsy was a generic term for 'unknown seizures'.

GP signed me off from work for a month this morning. I'd really like to get back to work as it helps to keep my mind off things.

Any ideas how long it might take for the medication to stop the fitting ?

JsOtherHalf Wed 20-Sep-17 15:31:09

Ring us Epilepsy Action Helpline call 0808 800 5050 - it’s free to call from all UK landlines and mobiles. We are open from 8.30am to 5.30pm Monday to Friday.

VinIsGroot Wed 20-Sep-17 15:39:38

DH was diagnosed with relapsing and remitting MS in Nov 2007. He been on beta interferon and now tecfidera which works really well for him. Sometimes a bit wobbly and get funny sensations ....general background stuff. Other things but PM me for other info. DS8 was born with epilepsy. We struggled to keep control but he does have a rare gene mutation and he's constantly growing!! Hes taking lamotrogine and Valporate. We have just been referred for Ketogenic diet so fingers crossed.
If you are seizure free for a year then you can usually drive. You will find that you will be have your licence restricted because of the ms too. No mini busses or large vans and a renew every 3 years.
Best of luck with it all !

shhhfastasleep Wed 20-Sep-17 15:59:00

I had epilepsy as a child. I have MS now.
Give yourself time to process it all.
MS does not mean your world has ended. I found out when my dd was 3.5. All I could think of was the things we wouldn’t be able to do together.
My dd is 10. We do loads together. I struggle with fatigue but the other stuff that I have is totally manageable now I have some strategies.
But I remember singing her to sleep when she started school with as happy a set of songs as I could remember and coming out of her room in tears.
You will find your way but don’t demand it if yourself.

shhhfastasleep Wed 20-Sep-17 16:05:07

And yes, I drive. I had to stop for about 3 years when I had my last seizure at 21. I’m early 50s now. When I got my MS diagnosis I dutifully told DVLA. They made some enquiries of my consultant but I didn’t have to surrender my licence. I need to “reapply “ every three years and, to be honest, it is a pain in the arse trotting it all out to them. I also have to let them know immediately if my condition worsens but I speak to my GP and MS nurse about that.
I don’t mess with DVLA. Not worth it.

INeedToEat Wed 20-Sep-17 20:33:10

Thank you all for sharing your experiences. It's been comforting to read.

I'm slowly getting my head round it. I get the fits sorted first as they are effecting me badly.

I've been told not to drive (Which I havent). Will my GP tell the DVLA or do I need to tell them myself ?

shhhfastasleep Wed 20-Sep-17 21:25:51

You need to tell them yourself. Prepare for lots of form filling but it’s doable.
Give them a ring as soon as you can.

INeedToEat Wed 20-Sep-17 22:55:09

Okay thanks. I will call them tomorrow. I was going to wait until I've had the lumber puncher (is that what it is called?) so I know the diagnoses (of MS) is definetly correct and official but i do trust the consultant i saw and he was 99% sure when he saw my MRI (i paid to go private in the National nerology hospital in London because the NHS were quite frankly appalling - so I trust he knows what he is doing).

I'm mot slating the NHS (much) and they were amazing with my appointments at the TIA /MRI clinics .. but I'd waited weeks for the neuology appointment and was getting increasingly scared by the seizures and by GP thought it was a good idea.

shhhfastasleep Thu 21-Sep-17 15:33:18

The lumbar puncture won’t necessarily be conclusive- mine wasn’t. It was the recurring and new symptoms . Tingling numbness and neuropathic pain in each leg, in my case. You might not get an MS diagnosis for a bit (or ever, who knows?)
However DVLA does need to know about the epilepsy diagnosis.
Good luck. Be kind to yourself.

INeedToEat Thu 21-Sep-17 15:57:47

Thanks Shhh.

Just got off the phone to the DVLA and need to wait and fill out some forms they are sending me which is pretty gutting.

On the plus side I went into work today to sort my lap top out so I can do more work from home. Was nice to feel nprmal for a couple of hours.

I've had the tingling sensation in my legs / back and belly (and occational burning sensation) for about 2 months now. Legs feel weak and a little off balance at times when I walk. Some days it's better than others.

Feeling down about it all today.

Toddlerteaplease Thu 21-Sep-17 17:03:11

I've never quite understood why they do a lumbar puncture as it can be confirmed on MRI. I refused one anyway as I've held too many children down for them. My Neurologist said it wasn't necessary anyway. Don't be afraid to push for the hardcore treatment if the injections/ tablets are not working.

Toddlerteaplease Thu 21-Sep-17 17:05:31

That sounds like my MS when I had my first relapse. I thought those symptoms were normal. Mine was diagnosed as a result of an MRI I'd done as part of a university research study. It was a huge bombshell, but I'm glad it happened that way.

INeedToEat Thu 21-Sep-17 17:34:09

Toddler hey again.

My consultant said that the legions on my MRI could indicate one of about 6 different illnesses (can't remember the other names) and that the lumbar puncher would confirm.

When you say injections / medication do you mean for the MS ? What kind of treatments are avalible and what are suppose to treat ?

Goldengirl42 Thu 21-Sep-17 17:38:32

OP- I'm another one who had got MS. I'll agree with the poster who put that that it's really not the end of the world. It's a terrible shock for you and will take time for you to adjust though (it did for me anyway). I was diagnosed about 6 years ago. I live a full and healthy life and work in a full time job. I have a few symptoms but they are maneagable and I have mechanisms to deal with them. Please PM me if you want...

INeedToEat Thu 21-Sep-17 20:01:16

Hey Golden. Could you PM me please .. I'm not sure how to send a first PM 😁

Thinkingofausername1 Thu 21-Sep-17 20:12:30

Sorry to hear this.
My advise would be don't get angry. It takes up more energy. And keep on top of your medication esp for epilepsy. I've got a chronic illness, you start to appreciate the smaller things in life, like a coffee in costa with a friend. Or sitting with a cuppa watching your favourite things on I player or tv.
Big hugs.

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