Scared & Depressed.

New diagnosis and before diagnosis
1

Hi Everybody,

I hope you can offer me some advise and support.

I have been in limboland for a year and have been told it’s going to be ms but i have to wait for a 2nd attack for a diagnosis.

I can’t bear it, i’m not coping, i have various symptoms that scare me and i’m pretty much scared about the rest of my life.

At this current time i do not have any medical support, i.e ms nurse etc.

I need some reassurance that ms is not the end of the world or the end of my life, that i can have a good normal life, raise a family etc, continue to work, keep my partner without me feeling like he should leave me etc.

I feel so unattractive and not worthy of anything or anyone.

All i do is cry, worry and write myself off, i picture immobility, walking sticks, wheelchairs and i dont want these things for my life.

I want someone in a medical profession to hit me and say “get a grip” your being totally irrational but i havent got that support.

Did you all feel like this to begin with? Have your worst nightmares come true?

I am sorry that this is so morbid but my being positive has vanished.

Thank you for reading.

2

Hello Anon,

If you do indeed have MS IT IS NOT the end of the world, there is life with MS. Hold your head up high and don’t be scared of the symptoms as more often than not they come and go, depending on which type of MS it is. There is no reason why you shouldn’t carry on with your life and as for your partner, if he/she loves you there’s no reason for them to leave you unless you push them away. Msers have up days and down days and you learn to work round them. It would be yourself that stopped you doing what you want not the ms. The main thing is you have (if you have) MS is doesn’t have you as a person. So live your life to the fullest. If you read other posts on here you will find we al keep our sense of humour and our pride. So don’t worry about the future let it take care of it’s self. Many msers have children, husbands and wifes who really care about them so why should you be any different? Take care and please stop worrying.

Janet

x

3

Hello Anon, Janet is right. A dx of MS is not the end of the world. When someone is dx’d they are still the same person that they were the day before. They just have a name that fits their symptoms. You sound very low indeed. Perhaps you should see your GP and see if ADs are appropriate. It is very common for people in your/our situation to suffer from depression, partly owing to the stress of such a dx and partly owing to the effect that the illness actually has on the brain itself. If you do not like the idea of ADs - perhaps some counselling would help. Whatever you decide, you cannot cope alone, please seek some help! Hth, Teresa xx

4

Sorry did not mean to post anon, must have pressed the anon button! Teresa xx

5

MS is absolutely NOT the end of the world. Not only are there far worse things to be diagnosed with, there are some amazing meds, treatments, people, organisations and aids to help people with MS cope with whatever comes their way. Sure, some of the challenges can be tough to overcome, but we do it. We work, get married, have kids, travel, socialise, love, laugh and enjoy life.

Since being diagnosed with RRMS in 1998, I have completed a degree and a PhD, got a black belt and a second dan in taekwondo, passed my Intermediate and Grade 8 RAD ballet exams, twice represented GB in taekwondo at the European Championships, become one of the top taekwondo technical judges in the UK, had numerous relapses, started on numerous meds, started using a walking stick, got myself a super snazzy wheelchair for when I go places that need a lot of walking, travelled around California and Northern Spain, climbed Dunn’s Falls in Jamaica, danced at my niece’s wedding, done a beginner’s Spanish class, kept up to date with MS research,… and at the moment I am planning my holiday in Australia next year (the flights are already booked :-)).

And while I’ve been doing all that, I’ve been a mum and wife.

Would I rather not have MS? Of course. Is it the end of the world that I do? Absolutely not.

Now for a reality check. You have had a single attack. This means that you may NEVER have another!

Please do not waste time, energy and opportunities by worrying about something that might never happen. Life your life to the full. If you do develop MS at some point in the future, don’t be looking back and thinking, “If only.” You can and will have a good life, if you choose to.

Karen x

6

Hi, I am similar to you, in that I have had one attack and if I have another docs say I will be diagnosed and onto medication.

I know it’s scary, really really scary.If i think about it too much I feel really firghtened. I see people about in wheelchairs and with sticks, I have to look away, it fills me with absolute dread because I think that will be me and how will I cope…So what do I do??? totally put it to the back of my mind, pretend it’s not happening, distract myself, go running, live my life, plan holidays…anything but think about MS.

I think we are lucky in that we have been given a ‘heads up’ about MS. We have been given a head start to get on with life right now… just in case. I look at it as if we have been given a warning. It’s a positive thing. So whilst we are well we should be living a lot and just enjoying feeling good.

Burying my head in the sand???..maybe…but it’s my choice and I am happy.

p.s have you been told to take VITD??? my neuro advised me too, just in case?

7

Excellent suggestion from Vicky - vit D3 has been shown to reduce the risk of relapses.

Kx

8

Hi All

My husband had his first neuro appointment on Friday and we were told its probably Progressive MS.

We are both feeling floored by the initial dianosis. We’re finding it very difficult to talk to people about it too as MS seems to be such an individual illness and there doesnt seem to be two people who have MS in the same way, throw in the unpredictability of the disease as well and its downright scary.

This morning my husband and I got up to do the grocery shop… after weeks of badgering I finally got him to accept that he needs to use a stick, he’s had it for about 2 weeks now and it has really helped him. This morning however he’s woken up feeling worse than usual. The muscles in his lower calves and his toes seem to have stiffened and he can only walk a few steps without having to stop, his leg appears to be dragging now which it wasnt a few days ago when we were last out, he also has excrutiating pain too.

I have booked him in to see a GP this evening but as we havent got an ‘official diagnosis’ and are waiting for his MRI and Lumber puncture I’m not sure what we can honestly do. He’s being so brave about it all and trying to keep going and manage as best he can, but I feel really helpless. I am going to try and hurry along some physio with the gp and see if there is anything else that they can offer, but today has really frightened me as I dont know what anyone can actually do to help.

9

Hi everyone,

Thank you for your responses. I read them & they make me feel a bit more hopeful. I feel like im a ticking time bomb waiting to explode. Ive never felt so uncertain about my future & my life. I work full time & have recently returned. I took alot of time off & i used up all my sickness allowance. Im scared that if & when something happens to me and i’m off work i’m not going to get a penny, that then means all my debts are up the spout and my boyfriend would not be able to pay the rent on his own. Im scared to close my eyes and go to sleep at night encase when i wake in the morning i won’t be able to see out of one of my eyes. My neurologist told me that another attack would included blurred vision in 1 eye or a weakness in a ar,/leg etc. I’d rather have the weakness but we cannot choose can we. I’ve just turned 30 but feel like a child again i’m so scared. I want to have a family but because of my depressed state etc im not even sleeping with my partner so it would never happen obviously! Then how could i plan for a child when i feel the way i do and if i loose my job etc. With work, if and when this 2nd attack happens, if i could go back to work, how could i leave looking perfectly normal, then go back needing help with walking etc. I just feel my whole world has ended. My speech is affected, my handwriting, ringng ears constantly, constipation, back and leg pain, it all gets me down and im terrified. All the tests i went through initially were horrible, the mri im terrified of, ct scans, lumber puncture, and i know i’ve got them all to come still at some point, they mentally messed me up. I would rather have been diagnosed then, than have to go through it all again. I don’t want to make my boyfriends life miserable and i feel sorry for him that this has happened, i cant keep a brave face on for him.

Am i taking this all too seriously, or am i just being realistic?

How do you live in fear everyday?

I’ve got some anti-depressants that i’m going to start taking tomorrow, i just hope they help me.

x

10

Yes, you are taking this too seriously. No, you are not being realistic.

No one can live their life in fear and have a life. We have to learn to let the fear go.

You have taken the neuro’s words far too seriously. Apart from the fact that you may never have another attack, if you do have one, it is just as likely to be a numb big toe as it is to be blurred vision or weakness. And whatever it is, there are meds and people to help you deal with it.

MS is NOT the end of the world.

Anti-depressants can help a lot, but they take a few weeks to kick in and sometimes we have to try more than one type to get it right. I think you should also ask your GP to refer you to a counsellor who is experienced in this sort of thing - counselling can be a brilliant help.

It will get better, but first you have to face those fears - and them let them go.

MS is NOT the end of the world!

Karen x

11

I was about your age when I had my first experience with possible MS, I completely lost all feeling in my right leg, mobility was ok but I could stick a pin in my leg (and did) and feel nothing, and that was 18 years ago! I realise I am one of the lucky ones, and I know from experience that it never goes to the back of your mind, but you can live your life, waiting for next episode is not worth the pain. What the hell is your doctor saying about blurred vision being your next problem? How the hell does he know what will happen? I had another attack about a year after the first and they didn’t even do a repeat MRI, just another lumba puncture, and I was sent on my way again. This year I have had more symptoms and was diagnosed in September. So, like I say, you can’t put it to the back of your mind completely, but please, don’t let it take over your life.

12

Hi, I was I’ll in January this year when one off my eyes seemed to face to the side of my head (eyeball) vision was funny and could not stand without being sick to top this off had to have my horse put down as well after 22 years this did not help doctors though muscle had broken in my eye was went to Southampton who thought I had a mini stroke next day got worse and was taken to Basingstoke hospital where I had various tests including lumber puncture MRI ct etc. The neuro said had a 30% chance of developing ms later on. Got through looking my grandad to cancer them get to September and had another bout this time started with numbness in my feet spread to my shoulders had steroids again :frowning: just been back finally have a diagnosis of ms to be honest I’m just glad to finally know whats wrong with me I will be going on beta medication I am not looking on the negative as I don’t think u can with this sort of thing I am still living and doing all the things I want to do if I get run down or tiered then I just get a few early nights I don’t think u can look on the negative because if u do u may as well give up. It’s hard

13

Hi everyone,

Thank you for all of your kind words and comments, i really really appreciate them.

Do you mind if i tell you my story as to how it all began? You may be able to advise me more as to what i should do, or if i should do anything apart from get on with it!?!

I will try to keep it brief!

Last November i had a bad cold, usual body aches/pains etc. Had 3 days off work. Went back and i found that my fingers were hitting all the wrong keys on the keyboard, i also remember having a feeling of weakness go up both my arms. As well as the problems with typing at the pc, i couldnt get my words out properly, and i noticed my right hand i couldnt hold my fingers all up level with eachother. This continued & eventually the whole of my right wrist/hand/fingers didnt work at all, my hand was completely disabled. Eventually got a mri. Was told my neurologist that there was something on my brain the size of a cherry & i was going to have an operation to remove it before christmas. Terrified. After a few days, my hand/wrist/fingers all started working again. But prior to this my neurologist said the people at oxford thought it was inflamation.

I was told to have another MRI a month later. I had evoked potentials which i believe i failed, the lumber puncture was inconclusive and following the 2nd mri, i was left with 2 lesions close to eachother which were smaller in size, these were on my brain. I was told to get on with it, they diagnosed it as transverse myelitus and that i was only likely to ever have it once in my life. My speech was fine, hand was working again etc.

Went to see neuro again (had to wait 10 wks to see him, i wanted to know more. He told me the only other thing it would be is ms and as it stands i dont have it.

He said ms isn’t horrendous and that people do ok for about 20 years!

I also had a doctor tell me that some people can end up wheelchair bound in 12 months! There giving me hope aren’t they!

Since May i have had constant tinnitus, really bad lower back/hip/muscle pain/ankle pain, twitching, pink prick feelings in my legs, dark shadows in my vision when looking at bright backgrounds, my speech issues have remained since may and constipation, also eye pain.

Been to opticians eyes are fine.

Last saw neuro in Sept he still didnt want to do a mri, he said i have speech issues because the inflamation was in that area, apparently the back and leg pain is sciatica & it can take 18months to go away, he said the ear ringing is just tinnitus & at that time i hadnt had the constipation and the only visual things i had going on were waking up with dots in my vision in the morning which he wasnt bothered about.

He only wants to do something if i get blurred vision in 1 eye or a weakness in a limb.

Is this the right course of action?

I take 1 amitriptyline 50mg to help me sleep at night, just started anti-depressants, the pain in my legs i have nothing for apart from coedine which takes the edge off a bit.

I feel sure that if i had another mri new stuff would show up but he didnt feel it necessary i have 1.

I have been back to my doctors, hes head of practise but im starting to wonder if thats worth the paper its written on, he told me ms doesnt cause pain which i know is rubbish! Hes writing to my neuro again to speak to someone at oxford, i reckon more of a physcological talk than a practical one, we will see!

All of the above is why i feel like a walking accident just waiting to happen, im frightened.

After seeing what happened to my hand, all of it didnt even move, it was a dead weight on the end of my arm.

I’m wondering what the heck is next.

Will my speech ever get better? I hate it i feel so stupid, sometimes its ok, sometimes its not, he said its in the area of where the inflamation was.

Ive also noticed my hand writing doesnt flow like it use to, will this improve, its been nearly a year.

Feel like im going mad.

xxxxxx

14

Im gonna shove this up to the top of the list again, karen… are you able to offer me your thoughts on my last post yesterday x

15

There are perfectly reasonable explanations for your more recent symptoms, except perhaps your tinnitus, although that can happen to anyone. The dark shadows with bright lights sound like floaters - these are normal. The hip/back pain and pin prick feelings are probably sciatica, especially as it is being helped a bit by codeine (which doesn’t help neuropathic pain). The constipation is probably a side effect of the codeine or the amitriptyline. Even if the tinnitus was MS-induced, it’s really tricky to spot a lesion causing tinnitus because the nerves are teeny. So, I think the neuro had logic on his side for not doing another scan. I also think he wasn’t talking specifics when he said blurred vision or weakness - I think he may have meant something obvious, for example, blurred vision or weakness. Think about how obvious it was that there was something wrong with your hand - something obvious like that would warrant a new scan.

MS not causing pain is an old fashioned idea that is now known to be rubbish. It doesn’t cause everyone pain though.

It’s true that some people with MS are fine for 20 years AND that some people end up in wheelchairs within 12 months. It’s also true that some people never even know they’ve got MS because it’s so mild, others are fine for 50/60 years and others for 10 years, etc. Basically it’s so variable, there is no knowing. However, how things start is often a good predictor of how things continue and people who are permanently in wheelchairs very quickly do not start with short-lived symptoms, they do not recover at all well and they are much more likely to have lots of serious relapses and lots more lesions on a second MRI. (In other words, they do not have your profile.)

Getting used to the idea that the future is unpredictable is tough, but there is absolutely nothing in your history to suggest that something catastrophic is going to happen to you.

Will your speech and handwriting still improve? Possibly. You’ll also find ways to cope with it better.

There really isn’t anything else I can say that I haven’t already said. I do not believe that you have any reason to be so scared. The chances of you waking up blind or unable to walk are TINY. You actually have a much better chance of never having another attack!

At the moment, you are seeing MS in everything. This is understandable, but very unhelpful. You need to let it go. Live your life as if you will never have another attack - because that just might just be what happens.

Kx

16

Karen, I don’t know if you agree but I would be thinking that this lady seems to have an awful lot of something storing up which may be also affecting her health and would therefore be recommending a referral for some therapeutic intervention like CBT?

17

Hi Anon,

You are having a really, really bad day, week, month. We all have them. Three months ago I felt exacltly the same as you. I felt I couldn’t cope anymore. I felt I couldn’t go on but you do and you get through it and you get stronger. I have been diagnosed since June. I had a really horrible attack at the beginning of the year. I was very scared. I started taking vit B12 (100mcg), vit d3 and Omega3. My symptoms started to subside after a week. I suggest you start taking these now. In addition I take St John’s Wort (HRI) or as Karen has suggested, anti-depressants, apparently Citalopram is very good but you can through anxiety in the first few weeks. I also take cinammon which has great anti-inflamatory properties.

I have also been on an eight week Mindfulness course. This has been incredibly helpful for me. It offers great support and is an incredibly powerful tool that has really helped with my depression and anxiety. This is a link to the tracks that I am using, https://itunes.apple.com/gb/album/mindfulness-meditations-mark/id429733506. It’s all about the breathing. Try track number 6 first. Count to four on the in-breath and four on out-breath until you are relaxed.

These are the things that ahave really helped me. Things will get better and they will probably get worse again. It’s nature of the beast. You really have to have a positive outlook and grim determination when things do get bad. This forum is also and excellent source of information and support.

All the best with it and happy Friday.

Adrian :slight_smile:

18

Yes, I agree: CBT or counselling in general can be very helpful. I saw a counsellor when I was newly diagnosed and it helped me massively.
Kx