recent dignossis

Primary progressive MS
1

Hello all, My name is Kylie, i’m 22 years old and I got dignosed with PPMS about three weeks ago now.

My GP thought I was suffering with Epilepsy and this is how I was actually dignossed with MS.

I’m just trying to get my head around what are and arn’t symptoms due to my MS, Please could you help me out? I have been suffering with the odd symptoms now and then since I was at the age of ten, which my mum made me believe that I was imagening them all, so I started to believe that all these weird things that was going on was normal, because my mum wouldn’t get me cheaked out.

First I suffer with really bad fatigue, I can have a good night sleep then wake up and within an hour I feel really tired again, this is without doing anything, it is alot more worse if I get up and do things.

Weak legs, No matter how far I walk my legs get really weak and causes me to collapse, sometimes this causes me to black out due to the amount of pain i’m getting with this.

Diplopia (Double Vision), I am suffering quite badly with my eyes, causing to suffer with headachs, nausea, vomiting and more fatigue, my optitions have had to put prism into my glasses to try and prevent this, I have been to my optitions again today because the double vision is once again over lapping the prism, bearing in mind this is the third time in four months that I have been to see them about this situation, but now the colour in my right eye is starting to fade away, as if the room is all cloudy, they told me that the guy who see’s me wasn’t in untill monday and explained to me that they might have to patch my eye up. I find out what will happen about this on monday.

Acid when burping, I don’t know if this is a symptom, but I have suffered with this since I was little, my mum always told me it was because I used to eat to many sweets, even though on some days when I suffer with it I dont eat any sweets at all, so I didn’t understand what she was on about.

Spasms, Aches, burning, and shooting pains, When I was about 1,1 I used to go to bed and get up with alot of pain, only on one side of my body, My mum said it was because I have slept wrong, and I sometimes got an electric shock pain going from my neck right down my spine my mum told me not to move my neck to quick.

Dizziness, I always have suffered with this, I’d get up and get that dizzy where I’d fall and be unconsious for a few mins, or even if I had a nice hot bath, mins after I get out I would then also got rewally dizzy and collapse, my mums saying is don’t move around to quickly But now I follow my mums advice and it still happens. I dont know what to do, any help on this?

Bladder problems (incontinence), This is only a new thing that has recentaly started, I sometimes cant make it in time to get to the toilet and accidentally wet myself, this is where I suffer with anxiety because I get scared to what people think if they notice that I have wet myself, Exspecially being only 22 and at college, my GP is trying his best to help me with this, I am now on medication to try and help prevent this.

Speach, this is the least of my problems though, I sometimes know what I want to say, but when I say it, I say something compleatly different, or if I want to say something and I see some other writing on a poster, I end up saying what is on the poster rather then what the conversation is all about, does this have something to does with MS?

These are all the main syptoms I have at the moment, but I am just worried about one thing, Two days ago I have some bad spasms in my right shoulder, and yesterday and up to now I have been in alot of pain with it, I can’t move my neck reach out or hold things with out it sending an bad shock all the way down my body, My friend told me to go to A + E about it because it may not have anything to do with my MS, what do you think I should do?

It is a big jump from Epilepsy to finding out it is MS instead.

2

Hello Kylie and welcome to the boards. I hardly know where to start. You have been through so much and are very, very young to get a PPMS diagnosis.

I can tell you now that all the symptoms you list are MS. Some people might question the acid reflux one… but I get that too and have found a couple of sites that list it as a symptom… SO it may be or it may not be… BUT all the others you list are.

Do you see a neurologist? Do you see an MS nurse? Are your family and friends supporting you and helping you? Is your mum being supportive now?

All of these things are extremely important. You particularly need to see someone about the bladder problems. There are things out there that can help.

The bad shocks you are getting in your body when you move your neck is called L’Hermitte’s Syndrome… google it. It is quite common with MS. (sometimes spelt as Lhermittes).

The fatigue is also very much part of MS. You need to rest as much as you can but also exercise helps. A physiotherapist should be able to give you some exercises that will also help with your balance.

The speech problem is actually a cognitive problem. This means that the MS is messing about with your thinking process… which is why the wrong words come out. Nearly all of these symptoms are made worse by stress and cognitive problems are much worse when you are stressed or/and fatigued.

Firstly can you post and say if and when you are seeing a neurologist again? You need to make a list of your symptoms and take them along.

I don’t know what else to say to you hon. You are being so brave in coping with all this, and I can only hope someone is helping you through it. This is a good place to come to. We understand what you’re going through. I suggest you also post on Everyday Living and on Young People. Make as much contact and get as much info as you can. Knowlege is power!

Take care Kylie and I look forward to seeing you on here again,

Pat xx

3

Hello! yes! I do see a neurologist every 3 months, and I have an MS nurse I am starting to see her every 2 weeks, I dont have any family but all my friends are very supportive and are helping me alot, I aint spoken to my mum since I was 18 and she still doesnt believe that I have got something wrong, for a fact she thinks im to young to have MS all together.

My MS nurse has referred me to an incontinence specialest, but unfortunately she said it can take up to 5 months to be seen to.

I will have to look that Lhermittes up, as this is doing my head in, and it is very painfull at times.

Im basically always suffering with fatigue, I can never get anything done without it affecting me, people say with MS you can stick to doing your normal day to day things, but how can you when your always feeling tired and always in alot of pain, not just with one thing but with alot.

I’v near enough got used to having cognitive problems though, so this aint really troubling me as much as the rest of my symptoms.

Good job the illness hasnt affected some part of my thinking then, when I’m typing this on here I am also writing it on some paper.

Pat thank you for all your help, it is very much appricieted.

Kylie x

4

Hi Kylie I am so sorry that you have been diagnosed with PPMS so young. I have only just been diagnosed myself but am 46. I do hope you have some lovely friends who are supporting you. It is such a shame that you are estranged from your Mum. As Pat says please take advantage of all the support and help you can get from the medical profession, especially re: your latest symptom which as Pat says sounds like L’hermittes sign. Just know that all of us on here understand how you feel and are here whenever you need us. Please stay in touch and look after yourself. By the way fatigue is so common with MS, I find I am exhausted after just having a bath and getting dressed in the morning. Pace yourself and rest when you need to. Take care, Teresa xx

5

Thank you Teresa, I am getting alot of spport and advice and I am glad I have been told about this site, because I was starting to go under with severe depresion with everything going on at the moment.

Kylie xx

6

It is perfectly understandable that you would feel depressed. If you do not feel you can cope with how you feel, see your GP, I am sure he/she will give you something to get you by. Most of all though, make sure there is always someone you can talk to, albeit a friend, us on here or even a counsellor. A lot of people on here have chosen to see one as a way of dealing with diagnosis. This diagnosis is not the end, it is just the beginning of a different life than the one you expected. You can still do all the things you may have planned to do ie. travel, get married, have a family etc. Don’t limit yourself, you still have wonderful times ahead of you, believe it! Thinking of you, Teresa xx

7

Hi again Kyliey, I’m so glad you are getting the support you need from neuro and nurse and you have some lovely friends. Sorry to hear about your mum. You of course keep in mind that this is her problem and not yours. For whatever reason she cannot deal with the fact that you are ill and now have been dx of MS. She has a strong, beautiful daughter and she has turned her back. Foolish foolish woman.

As Teresa said, you have still your whole life ahead of you that can include everything you dreamed of. Sometimes we just have to find a different way of doing things, or find support to help us do things, but we can still live our lives.

Fatigue is a very difficult one Kylie. Certainly you must acknowledge it and not, under any circumstances, feel guilty about it or beat yourself up about it. You will find that the fatigue can go up and down even with PPMS. Mine has been bad recently as Xmas really took it out of me (even though I didn’t do much!) and I’m still struggling. But I know my energy levels will pick up again.

You have to go with the fatigue Kylie. Everyone’s fatigue, like everyone’s MS, is different. So learn about how fatigue affects you. Take little notes (either mentally or written) about what really does you in. If you have a particularly bad day, think about why. What did you do the day before… or even a couple of days before? What might be stressing you out? What have you eaten or not eaten that might have affected your fatigue? Try different things. For instance I know that if I eat protein my fatigue is a bit better… so this morning (very tired) I had 2 eggs for breakfast. I’m feeling a bit stronger now. Yesterday I went out for lunch with a friend, so today I’m having a quiet day at home otherwise I’ll be really fatigued tomorrow. So it’s a case of getting to know your own body, MS and how fatigue affects you.

Awful though at your age darling when fatigue shoudn’t be something on your radar screen!!!

Stay strong Kylie. By the sounds of it you are handling this really well. It will get easier. As with everything once you get used to it, it will get easier.

Bye for now,

Pat xx

8

Thanks both of you, I do understand what you are saying, but like you said for my age it is going to be difficult, I cant do what other my age can do like go on nights out, going to the put for a few games of pool and a few drinks, even shopping ( I just dont have the energy) not even for food shopping as it makes me more tired, Im currentally going to college 4 days a week at by the end of the day I have people asking me if I wanna go to the pub, or the cinema with them but im just too tired to do any of that, As for eating well, I always eat my five a day, I always drink milk and eat sensibilly, but still like you said someone my age shouldnt be going though this, I just wanna be like all the other girls my age.

Alot of people know I have MS where I live, but still when I tell them I aint feeling to well or I feel tired there response is " O are you ok? whats up?), as if they have forgotten my dissability, so I remind them and they say oh yes! I compleatly forgot, I told them they need to start remembering that I have it, because I cant dont most things that they can do, like have an all nighter and going out for a night out and coming back at 5 in the mornings, because it is too tiring and stressfull.

9

It must make you feel angry that you can’t do what others your age are able to do and I’m sure you ask yourself the question, why me? I really understand how you feel, it isn’t fair but it is what it is and you must look after yourself. It sounds to me as if you know your own limitations - stick to these. You will cope better. It sounds like you have some great friends who I am sure will be happy to have girlie evenings in with a DVD and a bottle of wine. Like I said before you have to make adjustments to fit the MonSter into your life but you’ll manage it and come to terms with it. I know it’s not easy though. Hang in there sweetheart, Teresa xx

10

Haha, I like the way you said “you have to make adjustments to fit the Monster into your life”, your right the it is a monster, i guess your right where you say I have to start letting some adjustments into my life, because this is going to be with me for the rest of my life. :slight_smile:

11

Hi Kylie One thing you will find is that receiving a diagnosis of MS is that it is like grieving. You are grieving for the person you were. If you google ‘the stages of grief’ it may make this clearer but it is very common to feel like this. I certainly have done. I feel worse whenever I am in the car and see a jogger. I was never a jogger myself but it highlights the fact that I will never ever run again. I then have to think of all the positives in my life ie. four beautiful sons. Anyway, try to keep your chin up. Teresa xx

12

Hi Kylie

You may find this link interesting about shrinking the monster I attended a talk by Jo Johnson the author of “Shrinking The Monster” and found it very informative.

http://www.mssociety.org.uk/sites/default/files/Documents/Core%20pubs/Shrinking%20the%20monster%20-%20web.pdf

Hope it helps Chris

13

thanks chris x

14

Hi again Kylie, just a quick one to advise you to look at posts on here about LDN and look on internet … esp LDN research trust.

I am not on it (yet… I am thinking about it) but at your age and diagnosis I think it must be something you should research.

Take care,

Pat x

15

l agree with Pat - Do look at trying LDN - lt will help with bladder control and well as other benefits. l have been taking it for 3yrs and my SPMS has not progressed since l started taking it.- l learnt about it on this forum - wish l had known about it years ago. Also, do get a blood test for vitb12 and vitd3 deficiency. We ms’ers need a much higher level of both. And BOTH will help with fatigue and depression. Vit b12 can be given in injections at your gp surgery. Vit d3 - you can only get online. Amazon l find the best. Healthy Origins 5.000iu softgels 360 - thats a years supply- about £18.

Lots of info on the web about both vits - try googling vitamin b12 ms -and the same for vitamin d3 deficiency ms. Dr Chandy’s website about b12 is good. And ‘Could it be B12’ another.

l do not have a ms nurse - and in 30yrs l have only seen a Neuro/Consultant 3times - and they did not know much about ms. l have got more help from this forum since l joined 3yrs ago.

lf you need help with benefits at all - then there are folk on this site who are very knowledgable. l know they recommend benefitsandwork - and-turn2us.org.uk.

lts good to know your rights. And if you don’t ask - you won’t get.

lf you could get control over your bladder - and fatigue [which LDN/Vitb12/Vitd3 will help] you will be much happier.

l had to have a supra-pubic catheter fitted about 15yrs ago - and this changed my life.

All good wishes to you Chris.

Frances

16

Sorry - l should have said Kylie - l put Chris by mistake - a senior blonde moment. But good wishes to Chris anyway.

17

Yer thanks Frances im on b12 vits already as im b12 deficiency but thanks for the advice.

18

Hi kylie

Im called haze i use baffled as im iam baffled due to ms. I ahve had ms for 11yrs but due to having epilepsy they can’t tell what lesion is what and only to now when after last relapse in dec 2011 i lost my speech i knew what i wanted to say i couldn’t get it out. Like you said i to have nearly all of the same luckly i have good opthamologist who keep’s a eye ( lol ) my vision. As for everything else my g.p patches me up and i trial new med’s used for other diseaes to help most recent roprinole for cramp and is fab. I would like a friend to chat if you wanted im 30 but my body abilities are that of five year old. Iam trying to put my pm tag up but im in another relapse due to a severe illness otherwise i have noticed my trigger’s for relapseing which help’s. Your friend’s sound fab.

haze

19

Yer hun u can send me messages anytime id love to have people to chat to :slight_smile: x

20

Hi hon, yes it can be very lonely. Can’t even imagine how you manage with 4 children. You deserve a medal.

Remember that we are here for you. Come on here when you are finding it really hard. I hope you have some support from family and/or friends… although I know it’s hard for people without MS to understand what it’s like. The fatigue is hell isn’t it. I’m lucky that I don’t get a lot of pain, but the fatigue really does me in.

Take care and thinking of you ,

Pat x