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my ms story

Hey im Tasha im 18 thanks for reading :slight_smile: I have just been diagnosed in February but I had started symptoms in Aug last year. After I found it that it was ms I was so relieved because I knew what I was dealing with. I have relapse and remitting ms so its not so bad i suppose. The symptoms I’ve had are; problems with vision, sensitive sections of skin on my neck (my hair couldn’t even touch it cos it felt like needles jabbing into me), tingling in my legs and arms, complete loss of sensation in three of my fingers, problems with walking and balance and lastly is my most recent and wierdest symptom which is altered taste. Its strange its as if everything i put in my mouth has a metallic like after taste. Has anyone else had this? Its so strange i can’t even enjoy chocolate anymore hehe. The effects ms has had on me aren’t what I expected, im usually a strong person but lately I’ve been so down I can’t go out whenever I want because im scared i won’t be able to walk by the end of the night. I can’t even get any help as my appointment for treatment has been cancelled and rescheduled till Sept. I’m almost scared I try to talk to my boyfriend about it but I feel like I’m putting too much on him as he already helps me so much. Don’t know what i would do without him as i have no one else to rely on. Has anyone else gone through this or felt like this? Would love to get some advice from people who know what’s its like to live with ms Thank you T x

Hi there, just thought i’de say hi. i was 20 when i was diagnosed, so i know how hard it is. PM me if you want to chat. Just a thought, are you on any medication at all? cos if you are, it might be that is what is causing the metallic taste in your mouth, not the MS. love Bex xxx

Hi T and welcome to the forum…

I’m so glad Bex answered you so you know you’re not alone being a young person with MS. (I’m ancient… 60 in couple of weeks!).

I get a sense from your post that you’re depressed… and perhaps not even recognising that yourself.

Depression with MS is very common. We have a double whammy… the MS is so damned hard to live with it’s no wonder we get depressed, but also the lesions in our brains muck about with our emotions which also makes us depressed. Not at all fair but that is what happens!

Firstly, as Bex asked, are you on any med’s?

There are med’s which can help with lots of these symptoms… inc the sensitivity of your neck… so you really need to contact GP, MS nurse (if you have one) or your neuro. IF you are on med’s, maybe it’s time to change or increase the dosage.

Med’s can cause the metalic taste you talk about, so if on med’s read the ‘user info’ stuff and see if it’s a known side effect.

MS alters many things in the body and can alter taste and smell as well. So it might be an MS thing that’s causing the metalic taste.

Also you should think about going on an antidepressant. Loads of people with MS use antidepressants and they really do work! Nothing to worry about or be ashamed of… they just make you feel a whole lot better!

Also it sounds as if you are not talking to anyone about your feelings. That is something that can really help a lot also. If you don’t feel comfortable talking to your boyfriend, or family member, or friend, you can call the Helpline (number at bottom of page) just for a chat. It doesn’t have to be a great big HELP!!!.. it can just be a friendly chat so you can express your feelings. It will make you feel a whole lot better.

In the longer term, the GP can refer you for counselling if you think it would help to see someone for a while to chat. Again, this is nothing to be ashamed of… but to sit down with someone every week and chat about how you are feeling can really help… and you don’t have to do it for long. Worth thinking about eh?

It can be VERY VERY hard to live with MS… especially at first and especially when you are so young. So your feelings are perfectly normal and in fact you are being incredibly brave and mature for handling it so well. But feeling frightened, frustrated, angry, sad, guilty and relieved are all absolutely normal. So don’t fight these feelings… but try to find a way to express them. Coming on here is one very good way… but think about the other suggestions I have made as well.

Talking to your boyfriend would be great if you could try and do it. You know he is probably feeling scared and confused as well. If you could just start in a small way… maybe tell him about posting on here… it might help to open up a conversation between you that could be a great help to you both.

Take care hon and sending you great big ((((((((((((((((((((hugs))))))))))))))))))))))

Pat x

Hi Tasha

I was diagnosed in Dec 2011 with RRMS and I’m still coming to terms with it. My symptoms are very similar to yours. I’ve had to stop going on nights out because I’m so wobbly by the end of the night that I can’t walk. People just assume I’m drunk when I’m not (well not very). I think Ben is right about the taste thing. Are you on any mdication? I take Baclofen for the stiffness in my hands and feet which leaves me with a dry mouth and a metallic taste.

I was quite depressed and scared for a long time but I’m gradually feeling better, mentally if not physically. It sounds like your boyfriend is very supportive and that’s great. I find this forum helps a lot because people who don’t have MS can sympathise but they don’t really understand what you’re going through. I’ve found that no matter what’s going on with me, there’s always someone on here who’s been through it and can relate and offer advice and support.

I’m sure you’ll be fine. Best of luck.

JZ

Hi Tasha…

I honestly know how you feel because I’m diagnosed with MS too. I’m 17 years old and can you Imagine I found that I’m diagnosed with MS on my 17th birthday(It was painful)?! It is really good that your boyfriend is there for you. I’m sure that you are depressed but that is alright because as Pat said depression is normal for us. You can talk to me when you feel lonely or need help. I think that I can undersand you the most because both of us are diagnosed with MS at a young age. Stay Strong and Be Positive.

P.S-- If you aren’t taking a treatment, you should quickly.

—Angel

hi tasha

contact the neuro who diagnosed you and ask about an ms nurse and DMDs.

its shocking that you can be given such a diagnosis with no help.

meanwhile try to get to an ms therapy centre. i go to one in trafford and the people there are mixed ages and very friendly.

they offer a lot of therapies which are subsidised. i go for HBOT and a chat and a laugh.

like pat, i’m a bit of a fossil at 55 but us oldies love to share our knowledge and experience.

as pat says anti depressants are absoutely worth taking.

i take citalopram and amitripyline.

amitriptyline also helps with nerve pain (and makes me drowsy so i take it before bed).

carole x

Thank you all so much :smiley: I’m glad i can finally let out all this stuff that’s been building up. I’m currently not on medication as my appointment for last week was cancelled and rescheduled for Sept so i just have to wait :confused: but im staying strong and taking everyday as it comes. I just can’t wait to go onto treatment and i think it will stop me from stressing out cos the problem is we just never know what’s gonna happen tomorrow. Thank all for your kind words and advice, if yous ever need someone know that i am here for yous too :smiley: Tasha x

Hi Tasha & hugs

There’s plenty of good advice here so I don’t have much to add but like Pat’s said, you probably are a little depressed (I know I am when I cry reading a lot of these threads, I’m not usually that soppy and I think there’s real fear in what most of us are experiencing!)

I’m 43 and feel old suddenly… last year I could still turn heads when I walked in a pair of heels and now I’m flogging them on ebay and wearing sensible shoes - I’m angry/sad/over-emotional/frightened with moods changing by the minute! And you ARE so young so I think it’s even tougher in a lot of ways and I truly feel for you. I still remember what it was like to be 18 :wink:

I take Amitriptyline like Carol, I was actually prescribed it for IBS so quite handy really. It does help you settle and stress less.

Take care

Sonia x