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Newly diagnosed - so depressed...

I have just finished my 1st round of IV - over 5 days. It has completely knocked the shit out of me. In every way… The shock of the diagnosis has sent me in an emotional spiral, mood swings, despair and tears – I think amplified by the side effects of the Steroids???

Then there’s the insomnia, the limb numbness, the body temp issues… all of these listed as both side effects of the Steroids AND symptoms. So I can’t tell whats going on!!! And it’s eating me up. My wife is being strong, and saying its so early, stop worrying about it now you’ll have years, your life has not just stopped dead. But I’m struggling to here. It must be the steroids right??

I had my last IV yesterday… when will I feel better??? My 1st symptom (only one so far, I pray, was Optic Neuritis after a sauna & steam room) I just wanna feel normal again if only for a week or 2…

How long until the steroid effects wear off?

They found 5 lesions after my MRI, and I start interferons in 2 weeks… which I have read also makes you depressed.

hi loosefix, of course you are depressed the diagnosis is always a shock and it takes a long time to come to terms with, on top of that to have a course of iv steroids really messes up your whole system. The crying and mood swings etc totally normal most of us can relate to that.

it is going to take you time to get used to your diagnosis, I got diagnosed a year ago and am still coming to terms with it. You need to try and relax(easier said than done) tell the doctor exactly how you are feeling. If you have an Ms nurse give her a ring and talk to her. Your wife sounds great and she is quite right this is not the end of your life, your life is just going to change

post any questions you want on here nothing is to embarrassing or foolish to ask about. The people on this board are very friendly and have been a lifesaver for me.

ann x

hi loosefix

it’s a big learning curve so be prepared to be bamboozled!

rule 1 - expect the unexpected.

rule 2 - learn to be kind to yourself. if you have been used to being superman, it’s time to be clark kent. that is, don’t push yourself to do too much because your ms will know it and will make you pay!

rule 3 - learn to enjoy the small joys of life (a beautiful sky, birdsong, the love of your family).

your gp will become your best friend, prescribing things to help manage your symptoms as recommended by your neuro/ms nurse.

a lot of people have had CBT cognitive behaviour therapy and say it helped them to come to terms with it all.

some of us, myself included, have learned mindfulness meditation which really helps.

when you feel up to it - find your nearest ms therapy centre because these are great places with other people going through the same stuff but they are friendly, fun places too, you can have a range of therapies there.

for now, have a good cry. you’re well entitled to cry and it’s good to let it out.

get lots of rest and then have another rest.

if the interferons make you feel bad, tell your ms nurse because there are lots of other options.

you have lots of things saying “worry about me”. let each one have 5 minutes of your time, say “i’ve dealt with that” and move on.

worry leads to stress and stress is bad!

i wish this online club of ours had a real world meeting place but i’ll make do with sending you a virtual hug (((xx))).

keep popping on here

carole xx

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Hi, I felt just the same when I was first diagnosed I was given steroids in tablets form a few days after I was diagnosed and felt like I was dying, I was also having terrible neck and swallowing problems It took a few weeks to feel much better and 3 years on I feel great most of the time! just copeing with being diagnosed with MS is bad enough but then having Steroids as well is really hard to cope with, it does get better the longer you live with MS, I use to get depressed nearly every day but now its just the odd day, so give yourselve some time.

all the best Sue

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Hi loosefix, so sorry your in this horrible place, believe me we’ve all been there. Last thing you need is stress, everything gets exasperated with it. The streriods certainly will make you feel worse at first, then better. Trouble is waiting for the iv to finish gives you time to think of the worst scenarios & give you nightmares about MS. When I was diagnosed 9 years ago I lost the plot, all I can say I descended into madness, I was so scared of the truth I tried to block it out, didn’t work of course & I was constantly reminded, by the affects of the illness, that I had to have a good talk to myself. Eventually I realised stressing myself out & trying to fight it made me an awful lot worse. I’m not saying I’m not bothered ,but I’m certainly not letting it control my emotions like it did!! I am pleasantly mad now, not in self destruct mode. You will get there, doesn’t feel like it at no, but you will. Your still you, it won’t take that away. I remember watching a documentary when recently diagnosed, called here’s Johnny, he’s a cartoon artist, he summed up MS brilliantly, worth a watch, sure you can get it on DVD. Really, really hope you feel loads better very soon & remember what Carole said, we’re all here :relaxed: take care Tracey x

Steroids do make you feel rotten - depressed and not able to sleep. But you will get over that .

Your life will be different - but certainly not ended. And you will find a good quality of life - but it might not be what you invisaged.

This is the place to come to when you want to let go. You will not be judged - pitied - but understood.

Hi loose fix

steroids can do this . These sort of emotions are normal and in time , things will get better . Although right now, you won’t be able to see it .

kat x

There’s way too much going on just now for you to tease out what is caused by what exactly. Unless you are in the position to run a series of control experiments in a parallel universe, that is, but you probably have quite enough on your plate without that.

Of course you wife is quite right, but you already know that, and there is a world of difference between what you know and what you feel. It is OK to feel plain bad. You don’t need to rise above it and you don’t need to snap out of it, you just have to tough it out and hope for better days. And they will come. Really they will. Give yourself time and keep believing that you won’t always feel this way.

I hope that the steroids do the trick with damping down the MS. Sometimes they work quickly for me, sometimes it takes longer - weeks, even. They send me hyper and loopy and sleepless for a couple of days, but they are darned good drugs and the overall benefits are usually worth it. It must be particularly hard, though, dealing with that with so much shock and upset going on already. Hang on in there, loosefix: better days will come.

Alison

Hi Loosefix

First of all all of these emotions you are feeling are completely normal. It is early days for you.

A lot of these symptoms are probably increased by the steroids. The effects of IV steroids lasted for about 3 weeks for me. That was 10 years ago when I was diagnosed. I remember while I was on them I had a blood red face and racing heart. They also made me very irritable.

My first symptom was optic neuritis followed by walking and balance problems and other stuff.

I learnt to keep myself as cool as possible, which makes the symptoms less and also keeping out of stress which also helps.

I promise you will find ways of living with the MS. Finding ways to help your symptoms feel less.

Remember we have all been there and know exactly how you feel. You can have a good life with MS. You just have to make a few changes in order to lessen your symptoms. Rest, rest, rest whenever you can.

Take care.

Shazzie xx

I was/am hoping my Optic Neuritis is my only sympton and it will disappear over time, like i have read, it often does.

This would then leave me in limboland of ‘statistics’… hoping i’m the 50% uneffected for an average of 5-10-15 years? But right now I am zapped. I hope its just because i have been wired on Steriods for 7 days and i am now crashing/re adjusting?

I have also gone almst vegan over night… no fatty meats, am taking cod liver oil, calcuim tablets, vitamins… all knee jerk reactions i guess.

I go to bed at 9.30, wake up woozy at 6-7-8 am. I can function, but am definately foggy… Still can’t divide the side effects/withdrawls of steriod from what may be my new ‘Gait, fogs, aches and pains’…

The self pitty is lifting, but functionality definately waining.

This is crazy, i have just reloacted my family half way across the world, to start a new life/business to be diagnosed with this!

We have no familiarity around us, no routines we can stick too, our 2 young children are of course resilient but, poor things…i guess its just wait and see… what a horrible thing to wait for.

Next MRI in 3 months… anyone ever heard of getting an all clear 2nd time round?? (ON + 5 small lesions).

That’s really tough for you and your wife, being so far from the familiar at such a worrying time. The timing is not good, no question, but there it is. There’s no use any of us berating ourselves for not being able to see round corners and predict the future. There’s me, telling you again what you already know. I just wish things were easier for you and your family.

Alison

you are getting a lot of love from people on here.

i hope you can feel it.

good luck and i hope things work out for you.

carole xx

It sounds like you are getting good rest by going to bed early. Your body is healing and rest and good healthy food will help. As someone mentioned before be kind to yourself and rest and have more rest. Meditation is quite popular with MSers, i’m so glad I meditate every day as it keeps me aware of my stress and helps reduce it.

xx

Dear Loosefix. I am almost a year following my diagnosis. A self proclaimed alpha male; I moved across the planet, bought my first house and the stress of it all, provoked the relapse which lead to the MS label being applied.

All the crap you are feeling is normal / natural and so just ride it out.

You probably like a challenge and to feel in control of your own destiny etc… ambition is nothing to be fearful of… life is full of opportunities and diversity…

Well… here ya go. MS is a full grown sonofabitch because it will give you 101 questions, the answers to which are near on impossible to provide. But there lies the challenge.

Will you stop feeling the way you currently do and find an improvement in life? highly likely.

Will it be sustained? i should think so.

for how long? cannot know.

how bad will it get? no idea.

is your life over? not by a long shot.

You are starting some disease modifying drugs and this is good. (Interferon though…? Were you offered tecfidera to consider??)

You have embraced some life style modifications (aka quasi-veganism) and so did i. Whether this is a jerk of the knee or not, who cares? it is definitely a step in the right direction whether an MS’er or not! You could also take a range of vitamin supplements and start sun bathing your mushrooms! (search these forums for guidance on this and much more.)

Ultimately, your head is currently in a spin for more than just one reason. the take home message here is (and i know this is easier said than done but) DO NOT WORRY ABOUT IT.

Chill. Take some down time. Do NOT stress. And rationally assess yourself as you inevitably start to improve. Then through this, try not to dwell on those things you cannot do, but luxuriate upon the ability of all that which you are still able to do.

You might eventually gain a sense of this diagnosis putting you in a privileged position of appreciation of life’s little things, that most others are oblivious to.

Your long term prognosis is impossible to forecast, but there are many things which can skew the odds in your favour. You will settle upon a sense of normality and may even come close to forgetting that you have an incurable disease and perhaps before you know it, they will have a cure for you and you will end up feeling luckier than most people each and every day for the rest of your days!

All the very best of luck to you!