Forum

introducing me

Hi Folks
I was diagnosed in August - like a bolt out of the blue… even though secretly I knew it all along.

I think that I can handle evreything (thats just who and what I am) but I am not doing as well as I want to admit. I am scared you see.

My neurologist report hints at PPMS but this hasnt been confirmed.

I have just completed 3 days of intravenous steroids. Right now my questions are about how should the steroids be helping me? What will they be doing to me? What can I expect having had them?
I havent seen anyone medical since my diagnosis and had an appointment sent this morning for an appointment in December. It feels such a long way off and I really dont like all this “not knowing” and confusion because I havent got anyone to speak to.

I’m 40 and a mum to my 15 month old boy. My husband is baring the brunt of my mood swings and i just want to make everything better for both of them.

Sorry if this sounds like such a whine, I’m quite an upbeat positive kinda gal to be honest.
Anyway, introductions done, sure we’ll all get aquainted properly soon enough!!

Hello to you… you didn’t say your name??

Welcome the the forum, You are in the right place as there are plenty of people on here to help you… i’m sorry but I don’t know much about intravenous steroid so can’t help you there… I’m not diagnosed yet, seeing the neurologist on thurs so hopefully will get some answers… this is a great place if you want some help with anything or if you just want to moan or simply need some sympathy…

you might get the answer you need on the ‘every day living forum’.

take care

millie x

Hi Millie
Hope you get your answers on Thursday.

I’m Anita, but more often than not people call me Neets (if I get called by my proper name, I tend to think I’m being told off!!!)

Neets

Hi Neets, and welcome to the site :slight_smile:

The time around diagnosis is definitely one of the hardest times with MS, even if we are expecting it. We go through all sorts of emotions and can be hard work to be around, but in the end, most of us learn to accept it and move on. It can take a while though, so you have to be a bit patient, and not give yourself too hard a time.

One of the things that can help is talking about it all. If you don’t have someone you can talk to openly, then you could ask your GP to refer you to a counsellor or you can see if there is a MS Therapy Centre near you that offers counselling. I saw a counsellor early on and it really helped me to come to terms with things.

One of the other things that can be important to do is to give your husband the chance to speak openly with you too (if he wants to, and is ready to). He’s probably pretty scared too, but may not want to share things with you because he doesn’t want to add to your problems. If you’re also not talking to him because you don’t want to worry or upset him, then all that happens is that neither of you shares, and everything gets bottled up - not a great idea.

Hearing the words “multiple sclerosis” is often really scary because we don’t actually know much about it. When you’re ready, you could download some booklets about MS from this site and from the MS Trust website. It is really important to remember something when you read about MS though - it is massively variable! No one gets everything, and although some of the symptoms we get may be very difficult, others may be very mild, and much of what we read about may never happen to us. Learning to accept that unpredictability is one of the biggest lessons we have to learn. Living for now. Planning for the future, but accepting that we may have to change and adapt those plans. Letting go of our fears - because all they will do is stop us from enjoying our lives now. These are some of the things I have learned anyway. Your approach may be different. And that’s fine - after all we are all different, just like our MS is all different.

Final thing on steroids. Basically they reduce inflammation at the site of active lesion and therefore speed up the time until the current attack finishes. How well they work varies a lot: anything from brilliant to not at all. If they work, you should find your symptoms start to improve. They stay in your system for weeks so any improvement can take a while to show.

Ah, I lied… Now the final thing. It is not your fault. You did nothing wrong. It is not your responsibility to make things better for your husband and son. Be kind to yourself. It is not your fault.

Karen x

Hi neets my name is Tracy i am new to this site and find loads of info, now pop on most days :slight_smile: mostly just to read.

I am not yet dx but have lots of symptoms.I live with my daughter and son :smiley: they are great kids and give me lots of help and support.

Hope you get to find out all you need to know on here. and post what ever you feel good bad and ugly :lol:

Tracy xx

Millie hope you get all the answers your looking for on Thursday

Tracy xx

Hi Neets
Pleased to meet you!
I’m Clare aka bear. It is nice to meet you, you have come to a good place to hang out, learn, laugh and chat!
Clare :smiley:

Just a big thanks already!

Just being able to get it down on paper was a massive help, let alone all your answers.

Cheers all
Anita
x

Hi Neets

I am Dave aka daver79 lol your in the right place for help and a good old laugh and even if you want a good old moan were all here to listen and help. I have just last week had a five day course of steroids they help to reduce the inflermation thus improving symptoms but like someone said they work or they don’t it’s luck of the draw i have found. Only because i had a three day course back in may and it did nothing but after this one i am feeling the benefits. It can take a few weeks to see the full effects of them

Hope to chat again

Take Care
Dave :slight_smile:

Hi Dave
Thanks for replying and nice to make your aquaintance lol…
Thats interesting (if i’ve read you right) Do you mean that if the steroids dont work one time, that they may work another? and that the docs may try with another course later?

Anita
x

Hi

I was diagnosed back in march this year bolt out the bule for me as well, The steroids are ment to speed up the relapse, I had them back in march when i had a relapse of optic neuritis.

I have a 15 month old baby too and my nero said the change in hormons after pregnacy can triggar a relapse.

keep in touch let me know how you are doing

sue

Hi Sue
Its amazing that I have met several women who were diagnosed with MS after having a baby. I thought about the Vitamin D thing as well, not being allowed foods rich in it whilst pregnant and in my case having to move to a Vit D free multivitamin pill (for another medical condition). Is there a link? I dont know.

it would be good to keep in touch, similar situations etc. Think I could do with a friend who will understand too!!!

Anita
x

Hi Neets and welcome,

Not been here long myself but it certainly mkaes you feel like one of the gang. Its the first time that I have had something in common with such a large group of people.
Having something that nobody else wants from you is a refreshing change!
Best of luck and keep plugging away.

Tony