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In need of some support

Hello,

I am a 26 yr old female and i am currently showing signs of MS. I have had tingling and numbness in left left and arm, which has spread to my right cheek. I am also having balance difficulties and find it hard to concentrate at times. I have had a MRI brain scan and no brain lesions were identified, however, the A and E doctor wrote possible spinal lesion and I am unsure what this means? I have been to see a neurologist recently and he said I am showing symptons of MS. Since then my symptons have worsened and I am due to go see him next week.

I am feeling a bit overwhelmed by this all and dont really have anyone to talk to about this. Everyone I try talk to plays it down and doesnt really understand what it feels like to feel like you are losing control of your body. I feel like I can deal with the physical symptons but emotionally this is really getting to me.

I would be so grateful if anyone has any tips or some kind of advice.

Thanks,

Krista

hi krista

thankfully you have an appointment with your neuro next week.

its a rough time getting a diagnosis.

family and friends are scared of ms.

they tell themselves that you have blown it up out of all proportion.

have you someone that you can confide in? gp? friend? relative?

the ms society has a helpline.

i have found that mindfulness meditation helps me.

basically ms is for life so what you need is a strategy for living with it.

join your nearest ms therapy centre - you will meet loads of people of all ages. you can try the different therapies.

i have HBOT (hyperbarric oxygen therapy) at mine.

carole x

Hello Krista, I am so glad you are seeing your neuro again next week.

I know how scary it is when your body doesnt do what you want it to. Nobody understands unless it is happening to them too.

W e cant really expect them to can we?

Hang on in there luv. Try to get good quality rest and pace your activities.

I alway take someone with me, as a second pair of ears, to medical appointment. we can become muddled and miss some things the neuro says, it is like that for me, even after many appointments.

luv Polx

Thank you so much for your replies, it really means a lot.

I have had 3 really good days and I am starting to feel relatively normal again. Hopefullly Neuro appt on the 19th will answer some questions!

Krista

I know exactly where you are coming from. Nobody understands really. I have days where I must look drunk because of tremors and spasms. The rest of the time I look fine, apart from a walking aid…cue all the ‘well, you look well’ comments; ‘well, you don’t LOOK ill’. I’m now thinking of having a tee shirt made saying ’ I might look alright but I’m having a rubbish day’ for bad days ha ha. You will get used to it, I have. I’ve just got out of a 7 week relapse. Some of the worst symptoms were visual problems, balance, word finding and speech problems, numbness, paralysis on and off…oh the list goes on. My point here is, only people actually going through it knows what it’s like, and that’s why I love this forum…we’re all on the same boat really.some of my symptoms you might have had yourself and feel better knowing you’re not alone. Best of luck with the diagnosis process. Always here if you want to have a moan :wink: we all do it xxx

Thanks Beverly,

Its really reassuring to know that other people feel like this also.

You’re right, I always look like nothing is wrong so no one understands whats really going on which I find the hardest. The other frustrating thing is that no one understands how many symptons you are actually dealing with at the same time.

My symptoms have been going for 8 weeks now but hopefully they have stopped for a little while so I can get back to normal for a short time.

Thank you for your advice.

Krista x

That fine love honestly. It’s horrible at times. I’m now on my 5th day of feeling more human and I’ve loved it :slight_smile: but when you’re in a relapse it ruddy awful. It’s important to not overdo things when in a relapse and if you find that some family members don’t understand, they soon will when you have your(what I call) imposed rest periods :slight_smile: you’ve got to rest when you need to, and if they don’t like it…tough! That’s the only way that I got through it, by sticking to my guns and showing that I can do things when I can at my own pace. Before I did that I was making myself more ill and miserable just to keep others happy.i couldn’t maintain it, so now I’m a lot happier. I’ve faced up to it myself. Take care xxx

Hi Krista,

I am 43 just diagnosed with ms and going through the exactly same thing as yourself. It has taken me since December 2010 to get a diagnosis of ms going into hospital next week for 3 days for a spinal Mri and steroid iv drip. This is to pinpoint if I have relapse remit 's or secondary progressive .Just hang on in there pal. And remember we are always here for you if you need to chat?

Robert.

Hi everyone,

I use this saying and it gets me through this illness. I have have ms. Ms does not have me. I also turn the symptoms into a joke that helps me treat the emotional side but I know everyone is different.

Robert.

Thank you for your reply Robert,

The hardest part for me is people telling me it is in my head, so frustrating! I wish you all the best with the diagnosis.

Krista

Hi I Krista,

Thanks for your kind comments, just remember it is not in your head I got that for years and started shouting at all the doctors. Just try and keep a level head and keep telling the docs the same thing and eventually they will have to do something. Also we are here for you when you need us.

Regards

Robert.

Hi I Krista,

Thanks for your kind comments, just remember it is not in your head I got that for years and started shouting at all the doctors. Just try and keep a level head and keep telling the docs the same thing and eventually they will have to do something. Also we are here for you when you need us.

Regards

Robert.