Need help! Has anything like this happened to anyone?

Everyday living
1

Hiya guys, hope you are as well as can be!

I really need help to understand what is happening to me, this year I have had four consequtive relapses that have been resulting in symptoms on my face, so that means nerve damage in the brain from what I was told by a neurologist last year.

But now, I am having trouble thinking properly, as in the best way I can explain it is, I can’t feel my emotions properly and perceiving things is difficult, as in things at the social norm. An example I can think of, after my GCSE exams, I did well, got 100% in my chemistry exam and an A in Maths (one year early) and also Statistics. Then later on in the year (2010) I was diagnosed with MS. Now in College, I didn’t sit the exams due to breavement resulting in severe vision problems and I also realised I cannot do Maths and Chemistry anymore, I blamed the MS and my consultant neurologist said it was highly possible that was the case. So you can imagine how I felt when I sat my exams earlier this year when I got my results I was so shocked that I did way better than I could imagine and I wanted to cry just like I did when I got my GCSE results, but I couldn’t!

But this has also affected my conduct with others, now obviously any normal person has to think about what they say to an extent in order to ensure they are not offensive, but I am finding it hard to think like that! I have said things that are rude to others but have only realised after being told off for doing or saying such things. And I have upset people who are very close to me and that hurts even more. I had a five day course of oral steroids, to make the symptoms calm down, now for me and many others I am sure. Steroids = severe depression, but I couldn’t even feel that propery and I am very worried. Especially as my summer exams are coming up, these consequtive relapses have made revision quite hard, so I am very behind. But I just want to understand what is happening, because after a crazy symptom packed year and eventual diagnosis(2010), I had to build up my confidence and this if it continues without me actually realising, may bring that all the way back down again.

There isn’t anyone to talk to who will really understand, but I am sure you guys will have an understanding and could hopefully help me out. This is tough, as life goes on, I have learnt more about MS, but I never thought it would affect me or anyone for that matter in such a way.

Thanks in advance. Would love to hear from you guys!

Take care

Zak

2

Hi Zak,

Can’t offer you anything but my sympathy, what you are experiencing sounds hellish - I’m glad I haven’t had that particular “MS joy”. Hope it settles soon,

Luisa x

3

Hello Zak,

I have had a lot of psychological problems with my MS, including euphoria (a classic MS symptom), depression (another classic), feelings of being alone, feelings of not quite being ‘myself’ as it were, and feelings of anger, feelings of there being something very negative just around the corner and perhaps the weirdest of all - getting lost in my own house! All I mean to say is that the great uncle MonSter can affect any part of our poor perforated brains at any time, and as often as it wants to for that matter, so please don’t feel too shocked that you may notice any strange symptoms in yourself. I hope that your friends/family allow for these symptoms in you - I have had varying success with my own crowd. Good luck, and try to relax, even if this is not always easy.

Best Wishes,

Moira

4

Since l have been taking LDN - its over 3yrs now - l find my ‘brain’ is so much more alert - and l feel more positive in my outlook - plus less fatigue. l watch all the tv quiz shows and always win - including countdown. Before - l used to feel as if l was ‘outside looking in’ - not part of what was going on. All my friends want me on their pub quiz team.

F.

5

Hi Zak.

As Moira said, I’m afraid that MS can affect pretty much anything it chooses to and that includes emotions and moods, etc. It could be that what you’re experiencing now is another relapse. I know I’ve had cognitive relapses. For example, one was a period when I just couldn’t remember numbers - I have a Maths degree, but was having to transfer numbers from a hard copy spreadsheet to a computer one digit at a time (and double/triple-checking myself constantly too). Another one was when I couldn’t navigate - for example, I would leave the house to go to the supermarket (which I had been to thousands of times before) and a bit later realise that I’d gone completely the wrong way, but couldn’t work out how to get there from where I was. So, hopefully, these symptoms that you’re experiencing at the moment are temporary.

Given that you’ve had four relapses in such a short time, has your neuro mentioned disease modifying drugs / treatment? It sounds like you would be eligible and it could help to reduce the number of relapses you have as well as reducing the severity of those that still happen. It also might be worthwhile talking to your neuro about seeing a neuropsychologist, if your symptoms persist - neuropsychologists are experts in the effects of brain damage (whatever the cause) and may well be able to help you.

Btw, have you told your college about your MS? They should be understanding, give you allowances for getting behind and extra help to catch up and stay there.

I hope the exams go well!

Karen x

6

Hi I some times get the feeling my brain had a fog and I have to stop and think what I say as I worry that what I say if jumbled I also find it very difficult to let people in my boss days I have become very guarded it’s like I am protecting myself its like I’m afraid as I can get very emotional and I can’t let people see that side of me Good luck with it all

7

Hi Zak.

Every one of us has slightly different symptoms and effects (although most of them are common to most of us).
Like Karen says - tell your college about your health problems, and do it now!
They are bound to take it into account, and must make some sort of allowance. This could be anything from extra time for an exam, to a fast typist taking dictation from you if the vision gets too bad. Talk to your personal tutor, or advisor of studies, or whoever it is, and make sure that you get the consideration that you need.

Whatever you do, don’t stop thinking.

I can get short-tempered very easily - and it takes a little effort to check the (usually wrong) response - but then I am at the other end of my life. Once, I could prepare a new lecture (I’m talking Masters level here) in less than a week, and polish it up inside of another week. Now I am down to give a talk to my local Camera Club - in October - and it is much harder work. This is much harder work, but it is giving me something to focus on - it is only six months away, and it must be ready on time. I am not going to let my Club down.

From what you wrote, you have a very good mind - make it work for you. The expression “use it or lose it” really is true.

Geoff

8

Thanks for the replies!

Yes I am on DMDs at the moment, since diagnosis I was on copaxone for just under a year and I started Betaferon earlier this year, after the relapses I am now on the full dose. Last year the neurologist offered tysab but I declined, but after the fingolimod got the go ahead I was told I may be a candidate for that too, very tempting as I would love to get rid of injections! The needles seem to love me!

I have told my college, they are very helpful especially my tutor, and I plan to do a presentation on MS there too, but I just needed help understanding what is going on with this specific attacks. The depression I usually eat lots of chocolate to combat that! But recently it required a bit more, binge eating!

The medical team that I see, always say to me you have had a tough few months, but at the moment I cannot even perceive that properly either! I guess we all have to keep going, and if we ever have symptoms that are rather unique, it may be harder but we can live with it all. I think, if we couldn’t do it, we wouldn’t face it!

Thanks again!

Zak