just diagnosed very scared... :(

New diagnosis and before diagnosis
1

hi. This is all so new to me. I was offically diagonised with ms last thurs and even though i was prepared for this I’m finding it really hard. Wanted to write down how im feeling and see how others coped early on and just generally to have others to chat to who can relate.

Im 26 years old and this all came to a head literally the day after my 26th birthday when I was rushed into hospital with urine retention. Had no idea this was related to ms and was a massive shock to find out but i dont no if anyone else felt like this but i knew something was not right with me for a long time and in a way it was a refief to no that things wernt just in my head, that i wasnt just lazy and there was something wrong with my body.

My main sympton thay affects me day to day is my legs. I can only walk for about 15min before my legs go wobbley and are so clumsy if this makes sense-does anyone else have this problem? And can anyone tell me if they think this may get better as i have been told treatment wont necessary make them better just stop relapses making them worse, dont completely understand how it all works tbh. Another sympton i have which wanted to see if anyone else has is that i have really bad jerks in my legs, they are so violent and so obvious, if u were sitiing next to me you’d definately notice(my partner does everytime it happens) does anyone else have this?

I have been told i am going to be put onto treatment asap, interferon where i have to inject myself 3 times a week, something that petrifies me as i hateeeee needles. Can anyone tell me much about this treatment, side effects etc??? there just seems to be so much to take in and dont no where to start and any advice would be much welcomed.

Just feel like my life has been turned upside down and am so scared for what the future holds. I do have a boyfriend who i have been with for nearly 6 years who has been great and very supportive and i feel he is not going anywhere but im scared that this may all to much for him, maby not now but maby if my legs get worse…cant walk and all that, i dont no if i want to put im through that but the selfish part of me is like please dont leave me i dont think i could cope on my own. argg im just a bit all over the place atm and would love to chat to others in a similar position to me…

xxx

2

Hello and welcome to the site Coleen :slight_smile: Dealing with a diagnosis of MS is really hard, even when it’s expected :frowning: What I can promise you is that, for the vast majority of us, it gets easier as time passes, we learn that life goes on regardless and that MS actually isn’t the end of the world. But those early months are really tough - so hang in there! The best place to learn about interferon and other disease modifying drugs (DMDs) is the msdecisions website. Your neuro may have mentioned Rebif (the DMD injection that is three times a week), but you could choose any of the injectable DMDs. One advantage of Rebif is that using its autoinject gadget, the Rebismart, means not even seeing needles, so it might be a good option, but you should have a look at the alternatives as I am not up to date with what’s available. The way that DMDs work is to reduce the number of relapses we have (about 30% on average), but also to reduce the severity of the relapses we still have. They don’t fix any existing symptoms unfortunately :frowning: Relapses are strange things. Sometimes they are really mild, but sometimes they are very disabling. There’s no way of knowing what’s going to happen when and, unfortunately, there’s no way of knowing how long one will last or how well we will recover from them: sometimes we recover well, but sometimes we don’t and we are left with permanent symptoms. Recovery can keep going for a long time though and I’ve heard of people still finding some improvement 18 months after a relapse. So if your walking problems are relatively new, there’s still a chance that they might improve, especially if you get the support of a good neurophysio (your GP can refer you). Walking problems are very common in MS so what you’re experiencing is very familiar to me and, I’m sure, others. The jerks are also quite common. I’ve found that a combination of baclofen (a muscle relaxant) and pregabalin (a neuropathic painkiller) keep mine under control, so you might want to talk to your MS nurse (do you have his/her contact details?) or GP about trying something, if they are troublesome. I’m afraid no one can give you any guarantees about what a future with MS will hold, but please believe me that, although life might be different than you’d planned, it can still be good. But for now, just take it one day at a time. You’ll be OK. Karen x

3

Hi Coleen, Sorry for your diagnosis - it’s a tough thing to come to terms with. However, you will - it will take time though. Karen has given you tremendous advice and info which I can’t really add to but I wanted to lend my support. Hopefully, you have lots of family and friends who can lend you support but please know that we are always here to lend an ear when you want to chat or even if you feel like ranting and raving. Take it a day at a time and get plenty of rest - lean on others, let them take the strain. Try not to think too far ahead, just live for the day. I am sure you have a life full of wonderful experiences in your future - you just need to adapt your life to take account of the MS. As Karen says, you may find you recover very well from your relapse. I hope so, Look after yourself and take heart - most of us are coping well with our MS! Teresa xx

4

Hi Coleen

I’m sorry to hear of your diagnosis but wanted to welcome you to the forum .

Your diagnosis sounds like it was very sudden, I was diagnosed just four months after my first symptoms so can understand what a shock this was for you. I took it hard at first, I was frightened, angry, upset, practically every emotion that exists!! My relapse that had led to diagnosis had also affected my legs and it took several months to get them working properly for any length of time and I was worried they would never be right again.

However for the last 3.5 years I have been in pretty good health, I have had some mild symptoms but I never would have thought I would have felt this good. I have been on holidays, out dancing, walking etc, generally still enjoying life. I still work 30 hours a week, still have an active social life etc.

Hang in there, Coleen, it really can improve and I will keep my fingers crossed for some improvement for you. I am on Rebif and I am sure it has helped me enormously.

Tracey xx

5

thanks for all the replies. Very kind of you all. I no it will take time to sink in and hopefully with time will be back to my normal self. I do have amazing family and friends who have been there and feel so lucky to have them in my life, its amazing how you realise who ur true friends are in these suitations. And definately life is to short and makes me realise whats important. I no i cant let this control me and im going to fight this and just take each day as it comes.

Went out for drinks with friends last nite and had so much fun :slight_smile:

thanks for support.

xxxx

6

OK, that’s confused me! Have you changed your username or did I manage to somehow or other mistakenly conjure up Coleen from my MS-addled brain?

Glad you had fun last night :slight_smile:

Kx

7

lol yea i changed user name…thanks for the support.

xxxx

8

Good to see everyone giving such good advice and support - being newly diagnosed is very scary (I’m also in that boat!) but like others have said, it’s all a bit of a learning curve but sounds like you have people in your life to help you through any difficult patches!

The jerks you describe is one of the main things that frustrates me as it’s not an easy one to cover up. In one of my old jobs I had jerks in my arms and hands at one point and as I was speaking to a customer, the pen I had in my hand just went flying straight into them! I felt so embarrased but just had to laugh it off and carry on :slight_smile: I also find that if I was sat next to someone on a train or something that they would just think I’m fidgeting too much and get annoyed about sitting next to me!

All these things just take a little getting used to and with the support of forums like this, your MS nurse and friends and family - you’ll always have someone to speak to about anything that worries you!

I hope all your future treatments go well :slight_smile:

All the best,

Rachel

9

i completely understand what you mean about sitting on the train and being very fidgety…im exactly the same and feel the more i move my legs just slightly the less likely my legs are to jerk…you have a good attitude…laughing it off seems to be the best way…this definately has changed the way i see people in everyday life…you just have no idea what is going on in people life so never judge others… im feeling slightly better today after being to pilates this morning(even though it was soooo hard) but feel like i need to take care of my body more then ever now…so will keep at it.

its hard though cause i told the instructor that i had ms and i still have to hold back the tears when tell people as find it difficult to admit to others still…but i held them back so am proud… :slight_smile:

thanks for the amazing support.

x

10

Hello rosex, you are experiencing all the emotions that I am sure every person diagnosed with ms have had and continue tohave in some form most days. I was officially diagnosed with R/R 9 years ago following 2 years of symptoms that can be attributed to the illness but as the presentation of the these were very similar and the numerous tests were unable to confirm, it wasn’t until I had a relapse that affected me differently in the way it affected me that the proper diagnosis was given.

It was both a relief and very scary. Relief to know I wasn’t imagining the chronic tiredness, feelings of disorientation, slurred speech and having days when I kept deviating from walking in a straight line and ending up bouncing off the wall!.

But enough about me.

I have been on Avonex for 9 years this month, I gave myself an intra-injection weekly and it is scary, I was a trained nurse thought it would be a breeze, haha. But it did get better I can assure you. Last year I started using the new avonex pens, what a difference they are a breeze and so easy. Please ask your consultant or MS nurse if you would be able to use this method.

Some days I walk without problem and then for no apparent reason, they will let me down after just a short period of time, they become uncomfortable and I just need to rest up till they recover. I get a most unusual sensation in them which is not painful but they feel so fatigued they are annoying.

Leg jumping, oh iv’e had some beauties, nearly knocked a friends beer out their hand with one as my knee jerked up so quickly and so high. They are much improved now, however occasionally and without warning my knees with give way a little and my body will jerk, i’m used to them now but they scare the hell outa some people.

You have a lot to take in emotionally Rosex one day we get out of bed and our lives and the lives of those close to us change forever, scared is normal, frightened is normal, confused is normal, frustrated is normal.

Try not to overload yourself with too much at once, use your MS nurse and the MS Society to support you and your family, they are wonderful. It is several years since I used this forum but I am sure their will be someone who reads your post and will see themselves after their diagnosis in how your describing your feelings and it will be the start of numerous supportive reply posts for you.

Take every day one at a time.

Joysee

11

Hi Rosex

I was diagnosed in January this year after years of symptoms that suddenly become connected when you have a diagnosis.

Whilst I was fine with the diagnosis in January, I have recently become very upset about it. Possibly because I was trying to deny I am actually ill. I carry on as though nothing is wrong and then get upset and frustrated with my body when it doesn’t let me do what I want to. I was told that it would be a roller coaster of emotions and I didn’t really believe it at the time but now realise why people on this forum told me that.

I start Avonex (weekly injections) on 9th May which I am apprehensive about as I don’t like needles but as it’s only once a week I am sure I can overcome this. It’ll soon be part of the weekly routine and I probably won’t even think about it. If you have a MS nurse then they’ll discuss all this with you. I waited 12 weeks for the appointment so you will have time to research the options. I used the msdecisions website and had literature from MS Society and MS Trust, it made the discussion with the nurse much easier.

12

thanks so much…its so good to no there so many people in the same suitation…feeling the same emotions and that. The thing is im self employeed and work from home at the moment so in a way its good as i dont feel any pressure with work but on the other hand it gets rather lonely working on my own all day…am thinking of finding a studio space to share with others as think being on your own gives you way to much time to think about things. today was a good day but i no there will be good and bad…i find that once week comes im dying to get out and be with friends but im kinda going through a bit of a ‘drinking a bit to much’ phase…i literally will find any excuse to have a drink n just forget about reality for a while… is this normal?

thanks for the advice…Ive got a ms nurse and am seeing her thurs and have been told will have my first lot of interferon soon…not sure if that means with ms nurse or someone that comes to my house but i have a follow up appoit with my doctor in a month so am assuming i’ll have started treatment by then. ekkk :frowning:

thanks

xxxxx

13

My MS nurse appointment was to chat through the options and I have another appointment on 9th May to do my first injection at the hospital with the guidance of the nurse, I was sent for blood tests as this will need to be monitored frequently when on the injections. After that the drugs should be delivered to my house and I can adminster myself.