Forum

Pretty new to all of this so any advice would be so helpful!

Hi everyone! I don’t really know that much about MS at all. I thought for a long time I just had a bad back.Some kind of trapped nerve or something. I was sure of it. So I did everything the doctors told me to do, and last week I was floored when the MRI scan showed inflamation which they seem to be sure the cause is MS. I’ve started some steriod treatment- Medrone and prednisolone. I’m awaiting a lumberpuncture to confirm it. When the neurologist broke the news it really brought my world crashing. But with the support of my partner,parents, brother and friends I bucked my ideas up and started looking on the bright side. I realised how many people have it at get on with it, and it was managable.

My parents, who I live with right now had previously booked a holiday which they were going to cancel due to this news, however I didn’t want them to do that so I told them to go and not to worry. My partner has also had to work away a lot too this week. Usually this wouldn’t be a problem at all, but it seems these steriods may have affected me a lot worse than I could have ever thought! I’ve never had a history of depression and I’m always a bubbly out going person who can see the bright side of anything. However I’m only on day 3 of these tablets and come night time I just cry and cry! It’s ridiculous! I would never even think about doing anything silly but I just feel so sad and my head is swimming. Is this normal???

Any advice would be so welcome as I would feel so bad to worry anyone close to me about this.

Thank you Nadine, aged 29 x

Hello Nadine, Welcome to the forum but sorry at the same time xx I cannot be of any help regarding the use of steroids as so far I haven’t taken any but I’m sure other members will be able to help/advise on effects etc. Be easy on yourself as you will feel up and down as it is life changing news. I find that just when I think I’m having a more positive patch, some thing or thought will throw me back down again. A bit like a rollercoster. So it could be your emotions rather than side effects (just a thought but probably wrong!!) This forum is so supportive and informative, a haven :slight_smile: Sam x

Hello Nadine and welcome,

I have been on steroids many, many times and they have never affected me in that way. Maybe it’s a combination of learning that you have MS, your parents going on holiday and your partner working away a lot has made you feel unsafe, unsure that you can cope. When being first dx your emotions are like a roller coaster up one minute and down the next. You will feel as though the world has stopped and all these terrible things will happen to you. But, think back to how you felt before you were dx, you’re no different now except you have a dx. Cry, rant, scream get it out of your system. Life goes on you have MS it doesn’t have you. Hope that helps.

Janet

x

Hi nadine, i am so sorry for your diagnosis, i am Very new to this too. not had the steroids, but i have had a few rants and cries, and it really is better letting it all out. That’s such an inspirational way to look at it Janet! I must remember that one too! I guess just having that label feels like it owns you, especially on the bad days. But I will definitely keep that statement at the forefront of my mind! On the good days try not to think about it, that’s how I try and manage, and on the bad days, just come here to the forum. There are some exceptional people on here who will give you some sound advice which will help you, and make you feel like you aren’t alone with what’s happening…even the weirdest symptoms. Sending you big hugs Sam xxx

Already I feel overwhelmed by every ones responses! Everyone told me that there’s so much support out there, I just didn’t realise how quick it would be to talk to people who understand whats happening.

I think your all right. When I was told to be honest I could see my loved ones getting so upset by it all that I put it upon myself to put my head in the sand and tell everyone I was ok with everything. Now I’m starting to think I’m not, and I don’t want to show anyone I’m not.

I don’t know anything about MS. I understand everyone is different so I’ve been telling myself that I’ll just have to get on with it the best I can and whatever happens, happens. Although when I think about the future it’s really hard. I’ve just been promoted at work and I’m really loving my job. Things were going so well until this. Everything couldn’t have been going better and like you said Janet it now feels my world has stopped.

I decided to learn a bit about MS but I’m struggling to bring myself to do this. It’s such a huge thing as you all know. I just don’t know what to do next or where I should begin.

I do think the steriods may perhaps be contributing to the sadness that I’m experiencing at the moment, because it’s just so completely out of character for me. I’ll find myself crying at the smallest things. Even when I’m not thinking about MS something will set me off so quickly. I don’t know if I should get in touch with the doctor about this as I can feel some benefits of the tablets. I’m clueless as what to do next…

Hi Nadine and welcome :slight_smile:

Steroids are very potent drugs and seem to do different things to different people so I wouldn’t be at all surprised if they are contributing to your mood, which let’s face it, is under considerable pressure from all that’s going on!

Coming to terms with an MS diagnosis is hard. There’s no doubt that the fear of the unknown contributes to this, as well as the terribly inaccurate portrayals of MS in the media, but it’s probably sensible to take your time and not rush off to read everything you can lay your hands on. One of the main reasons for this is that there is a lot of bad information out there and it can be difficult to know good from bad in the beginning. So, when you’re ready to know more, it’s usually best to stick to the publications on this website and on the MS Trust website in the short-term. They are free to order in hard copy or to download.

One thing you should try to keep firmly in mind when you’re reading: MS is massively variable, both in terms of symptoms and severity of symptoms. You will NOT get everything you read about and even the things that you do get, you might get only mildly.

I know it feels right now as if your world has stopped, but give yourself some time and it will start spinning again and life will carry on. It will be different to how you’d expected it to be, but then that’s what life’s like - it rarely goes entirely to plan! And although there is no doubt that MS brings with it challenges that we’d rather do without, the vast majority of us go on to have long, happy and fulfilled lives. MS really isn’t the end of the world.

Of course, it takes a while to realise this so, for now, just take it one day at a time, don’t bottle things up (you have every right to be scared and angry at the world right now!) and be kind to yourself.

Some final bits of “housekeeping” that you should know, in case no one has told you yet: you need to tell the DVLA about your diagnosis (they normally put us on a three year, free to renew, licence) and your insurance company (by law, they cannot put your premiums up) and you should check any paperwork you have that might have a critical health clause in it (e.g. your mortgage) as MS is a payable condition.

Karen x

Hi Nadine, It is a shock when the dx comes, especially as you weren’t expecting it! You are still you though - no different in your head than you were before dx. It is hard to cope with - now wonder you’re so upset. When we find out we grieve, if you look up the five processes of grief, this may become clearer. Do take everything day-by-day. You will get your head round it but it all takes time. Be kind to yourself and lean on your loved ones as much as possible. You will have to adapt your life as you go along but you will still be able to loads of the stuff you planned to in the future. Thinking of you, Teresa xx

No not now - sorry Teresa xx

Hi Nadine.

Best comment about new diagnosis was something I read on here about a week ago. It went something like this;

“Having MS now means that I won’t be able to do much street dancing or gymnastics. But I never did any in the first place…”

Element of humour is important because, unless you are a professional athlete, life should go on pretty much as before.

And as for the psychological element of having a debilitating illness, just log-on here and sound off.

Keep bging on, as a famous wartime leader once said. Chin up,

Thank you everyone again for all of your and advice and words of comfort. It means a lot to know that there’s so many people out there in the same boat. I’ve taken on board everything you have all said and I’ve made my mind up that while I am feeling like this, it may be a good idea if I was to keep my head in the sand for just a bit longer while I’m taking these steriods. I think it has been an a combination of everything building up, but I’m sure these tablets are adding to the problem at the moment.

I have however been looking into other posts on here and they have thrown me into more confusion. I was made aware that some people are struggling to get a diagnosis for MS which has made me doubt my own…

When I saw the neurologist she seemed sure that this was the cause for my problems and discussed no other alternatives. Looking at the letter I had from the hospital it states “may be MS”…???

If I could share with you a little of what the letter says I’m wondering if anyone would know what this means? I’ve tried googling it, but I’m not at all medically minded and I just don’t understand it.

“Nadine underwent an MRI scan of her head and cervical spine. The MRI scan of her brain showed mulitple areas of altered signal in the white matter, with a deep white and periventricular distribution. There was also an area of abnormal signal at C3/4 and a faint area of altered signal posteriorly at C5. The radiology report suggests that these are inflammatory and together brain appearances are most likely to be due to demyelination.”

Could anyone shed any light on this? I’m totally confused by everything right now!!!

The report says that you have lesions next to the ventricles (the “lakes” of CSF in the brain) and the white matter towards the middle of your brain. There was also a lesion in the spinal cord next to the third and fourth vertebrae in your neck (C3/4) and a possible lesion at the back of the cord next to the fifth vertebra in your neck (C5). The radiologist is saying that these are due to demyelination, which is one of the core processes in MS. [To understand it better, see my Sticky thread “Beginner’s guide to the brain and MRI”.]

The McDonald criteria are the diagnostic criteria for MS. To be diagnosed with relapsing remitting MS, the patient needs to satisfy the dissemination in space criterion and the dissemination in time criterion. The dissemination in space criterion states that a patient must have at least one lesion in at least two of four areas that are typically affected by MS. These areas are periventricular, juxtacortical, infratentorial and spinal cord. Your MRI report states that you have periventricular and spinal cord lesions, in which case, you meet the McDonald dissemination in space criterion. The dissemination in time criterion is that the patient has had at least two attacks. Assuming that you have, you would meet the two criteria and (assuming that everything else is consistent with MS) you would be diagnosed with MS.

Everyone’s diagnostic story is different. Some people get diagnosed very quickly, but for some, it takes a long time. Of these people, some go on to be diagnosed with MS in the future, but a lot do not have MS. This forum is full of people at every stage and their experiences may not be true of yours.

Karen x

Hi Nadine

Sorry to hear your story and welcome to the forum. I find steroids do mess with my moods. Whilst I am taking them they make me buoyant and jittery and I feel hyperactive even though physically I cannot do a great deal. Then when I finish the course my mood swings the other way and I cry at the drop of a hat.

Having said that, I also agree with the other replies. When MS is first mentioned, whether it is suspected or diagnosed, it is a huge shock and it is natural for your emotions to be up and down like a roller coaster. There is a section on this website for the newly diagnosed which explains this and likens it to the grieving process and I found that very useful. As you have found, it also helps to discuss things with others who have had the same experience.

Give yourself time to come to terms with things, let it all out when you need to, cry, shout, rant, and most importantly rest when you need to. Then remember that you are still the same person and you can still enjoy life just as much as you always have. I was scared and confused when I was diagnosed and yet four years on I still 30 hours pw at my day job, also do a typing job ad hoc in the evenings, still have an active social life, and have added yoga to my hobbies as I find it helps.

Take care

Tracey xx

Thanks once again everyone! This forum has helped me so much through these last few days.

As the dose of the steriods decrease everyday I am starting (thank goodness) to see some benefit… both physically and emotionally. I’ve taken all of your wonderful words of wisdom, and I can’t thank you enough!!! It feels like my world is nudging forward again… and now I’m looking foward to the future.

I’ve learned how to talk to people openly and honestly about this, and in return they have done the same to me. This has made a huge difference. My head is still partly in the sand but thats ok with me right now because as you said Karen there is just soooo much information out there, (which may or may not even apply to me) it’s just too overwhelming right now. I’m just going to take my time and live everyday as it comes… good or bad.

I’ve decided to be pro-active. I’m looking forward to returning to work as soon as I’m well enough (although reduced hours to begin with) looking into a new diet and also taking up yoga as a lot of people have said it has helped!

More importantly, I’ve come to realise MS doesn’t own me… it’s just words… I’m still me!!!

I hope that one day I can be of much help to others as you have been to me!

You are all incredible people and I thank you so much! Stay strong x

Hello, where do I start, I fell down the stairs and had to go to the hospital. I now something had been wrong for a while as I kept on falling over and had numbness and pins and needles in legs. They did x rays and a scan off my spine. I went to my GP as the doctor told me at the hospital that I had degenerate osteoporosis and that I would be wheel chair bound within the next five years. I could not understand who the doctor could just tell me this without doing any test. My GP agreed, he orders some tests and checked me over. He said that he wanted to refer my to a neuro specialist and arranged for me to have a Scan to check for degenerate osteoporosis which came back inclusive. At this point it had been three months since my fall and I was not improving. I was tired all the time.I received a letter stating that my appointment had been cancelled and rearranged for a month latter. In the mean time my GP was treating me for pain. Some of the results came back which he stated the specialist would explain at my appointment in a weeks time which also got cancelled. I received a letter from my GP who had arranged for me to attend a neuro rehabilitation centre, two days later. This team checked me over, did lots of tests, checked my X-rays and scans which I had done pria to the appointment and told me that I had active tremors, he said that it was not degenerate osteoporosis but MS but he wants me to have a spinal tap to confirm. It has now been four months since I fell down the stairs and I have had so many invasive tests. He said that the spinal tap was just to confirm what he already nows through other tests/ X-rays/scans. Am I wrong to still hope that all the tests are wrong and that the specialist is wrong to say MS? Can any other disease course legions to the spine. I don’t want anyone to now, family and friends but I just need to vent. Thanks Em

Hi Em, If I were you I would start a new thread rather than add on to someone else’s. Otherwise people may not notice it! Teresa xx

Hi from me too Em :slight_smile:

It is easier if you start a new thread, as Teresa said. If you look above all the other threads, you will see a “New Thread” button.

In the meantime, no, MS is not the only thing that can cause lesions on the spine.

Do check that the referral to a neurologist has gone through - these things have a habit of getting missed :frowning:

Karen x

Oops! Sorry Em - I got two posts confused. Please ignore the neuro referral comment!

Kx