Mood & Personality has changed...I'm not me anymore :(

New diagnosis and before diagnosis
1

Hi all

I hope someone out there can advise, or reassure that I’m not just ‘cracking up’

I used to be, up until the beginning of September a very independent, happy confident single woman (middle aged). Then my right leg became paralysed: I was dragging it along the floor. I had an MRI, which showed loads of lesions, and a preliminary dx of possible MS. I then spent six days in hospital having 3x IV steroid treatment and since I have become a fearful, feeble wreck of a woman, who goes no further than my corner shop without being driven & someone being with me…

I keep saying to myself " This isn’t me" ~ " What’s happened to the person I was 2 months a go"

Before ‘leg gate’ I actually travelled on a train (alone) with a massive suitcase to meet up with friends in Cornwall, by Day 3 I was back home but in hospital, and since that day I have had numerous other symptoms (numb bits, pain in my finger tips, stiff painful neck, horrible fatigue and an annoying tremor which makes my hands shake) and I’ve lost my confidence & ability to want to live the life I had before.

I have had a few physio appointments, which have helped a bit, but there is still a ‘marked difference in the strength and sensation’ between right & left leg (physios words) ~ I have to really concentrate on walking so have to walk at a snails pace and get horrendous cramp in my toes, 3 toes curl under after 5 minutes of walking.

And all that scares the b’jesus out of me so much so that I fear that something is going to happen when I’m out alone ~ which is stupid I know as I live alone, and I don’t worry about anything happening when I’m here! My god I am cracking up…

Does anyone else feel this way?

I’ve also noticed that my tolerance to ‘stress’ and basically my tolerance levels in general have diminished - My dear little 2 year old Grandson drives me crazy when he’s here, running around and playing (normal 2 year old play). Whereas before I would scoop him up and distract him, I now look to his Mum (my darling Daughter) to give him a bit of a telling off - lol she doesn’t and just says, calm down Ollie, Nanna wants a bit of peace and quiet. But Nanna doesn’t really want peace & quiet Nanna wants to be Nanna of old - new Nanna seems to win every time though.

I’ve got a Neuro appointment tomorrow - my first since discharge from hospital, should I mention this to him? I’ve got a list of symptoms and questions for him. Are my fears and feelings worth mentioning too?

Any help and advice or just knowing that this is ‘normal’ will be appreciated.

Thank you

Karina

2

Hi Karina,

Yes, it is perfectly normal to feel fearful and anxious in your current situation and I don’t know of many who wouldn’t so cut yourself some slack hun. The problem with anxiety is that it can take over your life and progress to depression if you let it and by asking for help on the forum you have taken the first step to stopping that from happening.

I think it is definitely worth talking to your neuro about it so make the most of your appointment by making a short, concise list of symptoms and questions and try not to let him rush you (but do bear in mind that most neuro’s are under pressure to see people quickly).

If you have no joy with him, book a double appointment with your GP, who may be able to prescribe antidepressants and/or counselling.

We all need support in times like these hun and I hope you get back to your old self soon.

Mags xx

3

As Mags has already said, you are absolutely not cracking up; instead, you are responding to an incredibly stressful time with a completely rational response! OK, to be honest, it’s not completely rational, but it’s definitely normal!

The last time you went out on your own (with your suitcase to Devon), you ended up with all this crap happening. You now fear something else happening if you go out on your own again. And that association is why you feel safe at home.

The only way you are going to break this is with time and the gradual replacement of the very bad experience with lots of little normal experiences. After all, the reality is that you will not get sick every time you go out. You might feel temporarily worse because you’ve overdone it, but you will NOT relapse.

But in the meantime, you are living with this fear, which is constantly reinforced by you having to deal with your symptoms. That is exhausting. And when we are scared and fatigued, we have no patience for the little things that would previously not bothered us at all. And that in itself adds to the fear and the fatigue.

The only thing I can tell you is that if you choose to keep living a normal life, it will get better. If you are struggling at any time though, please see your GP and ask for counselling. It can make the world of difference.

Should you tell your neuro? Yes, I think you should. Apart from anything, subconsciously it may make a huge difference to hear a neuro say that it is safe to go out. (Our brains are weird that way :-))

I hope it goes well.

Karen x

4

Thanks Mags

I think it’s reassuring enough to know that it’s not just me ~ and that it’s ‘normal’ to feel abnormal. I do try to push things too hard and ‘put a brave face on’ things. The nurses in hospital used to call me smiler… perhaps it was help enough just to externalise my fears and thoughts. I haven’t really until now…

Does it sound strange to say that worse case scenario tomorrow at the end of my Neuro appointment will be a " come back in 6 mths/when/if you have another attack" even though I know that the chances are it will be.

I am petrified of spiders, but I think I could happily tackle that phobia this very minute, rather than get on a bus and go into town. And that is something that I used to do without even thinking about ~ because I’m afraid of the unknown now, of what could happen.

Is there anyone who has had any councelling/cbt for this? Did it work? While in limbo land are there any drug treatments which would help - I’m loathe to take meds of any kind, but if needs must and all that.

Karina.x

5

And thank you Karen :slight_smile:

That all makes so much sense ~ I long to live a ‘normal’ life… perhaps with more ‘me’ time. I’ve been on SSP for 2 months and haven’t got a job to return to (I was/am a temp) and the company I was a temp for had to replace me, so no job left for me

It’s all adding to the stress at the moment…

So many things going on with my little scarred brain. It’s amazing that I haven’t had a complete melt-down.

x

6

Hi, my words will echo some of the other replies you`ve got.

Of course youre not cracking up love. Youre acting exactly the way the majority of us have.

Before my neurological problems, I too was a strong, feisty and bubbly person, who feared almost nothing! When I was 40, I`d lost a hell of a lot of weight and became a part time class leader for WW, passed my driving test, had my own car, had a boob lift, and got promoted at my day job. I was on cloud 9!

All that changed drastically at 45 ish. I began falling, feeling whacked after just a mornings work, had gained a lot of the weight id fought so hard to lose and keep off.

Since then, my life has changed in so many ways.

But you know what? i have discovered I am still me! The first few years of my disability saw me a wreck of ???s.

I had test after test and nothing ever proved MS nor many other conditions. One good thing i did know, was that i didnt have a cancer tumour or any other terminal illness. Yes, that was a huge relief!

I used to have panic attacks when out or in the house on my own. I was terrified something bad would happen, like you are.

I did have falls, toiletting accidents, and other things happened.

What you need to do hun, is tell your neuro everything. But try to keep yourself together…sadly I have heard that people who lose their cool, or composure when speaking to a neuro or any medic, can be seen as neurotic. I know you`re not neurotic and so do you. Please dont take that the wrong way. I am just trying to advise you the best way I can.

Your neuro will probably order a set of tests. Then he may take a while before he gives you a diagnosis and possible treatment plan.

Give yourself time to let things sink in. Explain to you daughter how you are feeling.

Similarly to you, I had a new baby grandson just before I had to retire from work, due to ill health. My daughter refused to admit her mum was poorly. She needed me to be normal, to help her adjust to being a new mum.

Did you know mums arent supposed to get ill? LOL.

Anyway, i`ve gone on long enough. I look forward to hearing how the appointment went tomorrow.

hang in there love, yeh?

luv Pollx

7

Yeh, thanks Poll

I’ve got my trusty list of symptoms ~ which feels like it’s ever increasing. And I’m also worried that I’m going to be looked on as being neurotic…but then again I also think, well the scan results are there for all to see and they are definitely not imagined. So there’s definitely something going on which isn’t right.

When I was in the tube/and before when the leg first happened, my one main fear was a tumor, either on my spine or brain. So to find out that it was possible MS was a bit of a relief (an old friend was dx with MS in her late 20’s and she’s doing great) I felt positively ‘normal’ and full of beans after the steroid treatment & so went home thinking I was fine. However, over the past 2 months more symptons have reared their ugly head, which have made me stop & think, and yes, I’ve started to feel panicky and very anxious.

I will let everyone know how my appointment has gone tomorrow, I think I’m also going to make a Doctors appointment this week to get this nipped in the bud (or to at least feel like I’m doing something positive)

Karina.xx

8

I just wanted to wish you Good Luck for tomorrow Karina. I hope your neuro will help set your mind at rest and enable you to feel a bit better. Teresa xx

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Thank you Teresa

I’m feeling very nervous this morning and the appointment isn’t until later this afternoon, it’s going to be a long day!

Karina.x

10

Hi Kari

Good luck with your appointment, hope it goes well for you.

Pam x