Sorry if this is long, I have been reading but never plucked up enough courage to post. Bit of a head in the sand as well I think.

I was diagnosed with epilepsy 3 years ago and at 37 it came a shock. I have had a few odd things over the years- funny eyes, pins and needles etc so once I had that diagnosis I just put it all down to that.

I saw my e neuro a few weeks ago and she noticed the tremor in my hand that I have had on and off for a while. She asked if I had any other symptoms with it and I told her my co ordination is terrible and pins and needles in my feet and tongue (!!??) are driving me mad but I assumed it was my meds.

She said it wasnt and has referred me to an ms neuro for further tests. That is terrifying enough but tonight my right arm and leg have gone really weak, I feel like my leg is struggling to hold me up.

I haven’t told my hubby any of this as he has a high pressure job and I want to be certain first.

Am I over reacting, I am so scared

Hello x

First of all - no you are not over reacting - you are just reacting ‘normally’ - as most people would . Of course it’s scary when these things happen x

There are lots of things that can cause these symptoms so all you can do for now is go with the flow and let the docs unravel it all x

There are lots of people on here who know what you are going through and are here to support each other - me included -x

But I would think about whether or not to tell your hubby - these things can take a very long time to resolve - and we all need support from our loved ones at times like this - would he be happy if you keep him in the dark?

Perhaps take some time to get your head around things a bit more then you can discuss things calmly with him & reassure him xxxjenxxx

Thank you its good to know I’m not alone. I have had a lot of the basic investigation due to the epilepsy so some of the other things it could be have been ruled out.

I know I should talk to my husband but thought I would wait to see the neuro first so I know where we are going. I have confided in my closest friend and she has been brilliant.

Thanks for listening to my rant xx

Nope! You are certainly not alone on here!! xx

That’s good you have confided in your friend and you have her support . Only you know how best to deal with hubby - mine is a ‘yes dear’ kind of person - ‘in one ear out the other’ - so I tend to drip feed him stuff!!! lolol

It’ll probably hit him big time when we see the neuro and I read out my huge long list of symptoms all at once!!

Being diagnosed with Epilepsy is a big thing in itself! But you have coped with that so i’m sure you will cope with whatever else is thrown at you xxxx

No problem with ranting! Yours is quite short!! You should read some of mine - I’ve had to write them in chapters!! lol xxjenxx

My hubby is a yes dear kind of guy too but then stresses under the surface.

I have to admit I haven’t really coped with the epilepsy thing well at all but hey ho on the plus side at least I know the way to the neuro department lol

Pins and needles in your tongue is annoying - I have them on one half and the temperature sense has gone wack :slight_smile:

Only you can decide how much you’re ready to share with your husband but as the others have said make sure that you have a network of support whether its a close friend or this forum. It can be difficult and distressing when you’re experiencing strange symptoms and knowing you’re not the only one its happening to can’t make it go away but at least you’re not alone.

Take things one step at a time. There’s a vast number of things that could cause your symptoms and the process for a diagnosis can be slow. Seeing the neuro is a good first step



Thanks for the replies. I’m still agonising over whether to tell my husband but we are having problems with our oldest son at the moment (ADHD) and its taking all our energy!

I had a ct scan about 15 years ago and the neuro then said it showed infarcts but never did anything so I left it. I had an mri 3 years ago but my neuro now was vague about it but she was looking from the point of view of epilepsy so not sure that would make a difference.

Think is my neuro is world renowned and she said she suspects ms so I guess thats what worries me.

I feel terrible today, I need to clean my younger sons room but its up 2 flights of stairs and I’m struggling to make it up 1. My legs feel really weak and I’m out of breath. I have pins and needles which I get a lot but the wierd thing is one leg feels like it has been wrapped up really tightly and my foot is freezing. It feels horrible

Hi ya 'noo

As others have said these kind of symptoms can be due to one of many things so try to keep as open a mind as possible. You have a lot on your plate so I really would reconsider telling your hubby about how you’re feeling - support from our loved ones is important and will help get you through.

Take one step at a time - see what the neuro says and take things from there. Sometimes it can take a while to get to the bottom of things simply because ‘ms type’ symptoms can be related to other conditions which will need to be ruled out.

It’s a scary and worrying time - we all know what that’s like - so remember that we’re here as and when you need us or even just for a chat.

Good luck & take care of you

Debbie xx

Having read the replies I have decided to tell my husband at the weekend so he has time to process things before he goes back to work on Monday.

Another reason is what started as pins and needles in my feet has now spread and my face and arms are affected. I can’t keep this to myself anymore.

I am on the cancellation list for the neuro as well so will hopefully get an appointment sooner.

Thanks for listening to my moans when you all have your own problems. I’m so glad I plucked up courage to join, you are all lovely.