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Newly Diagnosed at 27

Hello

I have a dx of RR MS since June 21st this year. 9 months after my first baby was born.

I have had two mris spine, Cspine & Brain. Brain showed a few lesions. I was then given my diagnosis based on my scan and symptoms . For me it began with Optic Neuritis , trembling hand & balance issues.

I received two doses of Iv 3 day steroids in June & again in August. I’ve not been on any meds , there is talk about it now but I want to get a second opinon before I begin anything… I’m not saying my docs are wrong , but a second opinion is always a good thing i think. Did you get two or more opinions ?

Everything is still all raw for me. I still feel confused, I’m still grieving the old me :frowning: , every minute of the day I think about the future ahead of me and it scares me. It’s the uncertainty. I was an anxious person before , but now it has sent me over the edge. I’ve turned into a total hypochondriac.

Symptoms I deal with on a daily are…Imbalance, memory fog (Getting slightly better) , eyes feel heavy at cloudy at times, waking up tired , zapping headaches that come as fast as it goes & in the past week I have tingling in one my legs. Does anybody else deal with all these things on a daily basis? It seems like a lot??

What was the first medication you first tried and how did it go? I’m so scared with all my symptoms its progressed… maybe this is just the disease tho? and it’s not a relapse…?

My husband and I want another child soon too & my docs have said don’t let my MS hold me back! but I am trying to be realistic and think about that relapse afterbirth & I worry it will be the one that gives me a dibilating relapse that I can’t come back from to stay as healty as I can right now, I am taking daily supplements & eating clean.

Apologies for the essay of a post . I clearly have a lot in my mind right now! Please send me a reply and let me know your experience. Thanks - M

hello M sorry that you have been flung unwillingly into the midst of such a motley crew. i only had the one ms specialist consultant and agreed to start on copaxone. that was because i was sick of being thought a hypochondriac. copaxone went very well for the first 5 years but then i had very bad injection site reactions and my ms nurse switched me to tecfidera. my early symptoms have stayed with me but i got used to them and they became my new normal. don’t worry yourself sick, there are lots of really bad illnesses out there and anyone who doesn’t get one is a bloody lucky so and so. a good move that you are eating clean. with support from your ms team you should be able to have a healthy baby. don’t start playing that worse case scenario film on a loop. good luck, come back with any new questions or to have a moan. carole x my advice is to swot up on the available Disease Modifying Drugs (DMDs), discuss with your husband. then if you feel up to it, speak to your ms nurse about trying one.

Thank you so much for the reply Carol.

You are right. anyone who doesn’t get a illness these days is a lucky duck!

I’ve been researching meds over the weekend & saw people say Lemtrada gets good success rates… the side effects don’t seem as bad compared to other meds althought I am fully aware it is used as chemo so its insanly powerful & depleats your immune system.

What side effects did you have on Copaxone? and now on the new drug. Is it going well for you?

I was feeling dreadful on friday & saturday, both legs tingling at the same time :frowning: and I have a ache and pressure sensation in my left ear but both crackle when I swallow. Have you had this before? I go to my Gps nurse later on to get it checked out but I already know its probably all to to do with this possible relapse.

hi again copaxone is quite an old DMD now. i had no side effects other than injection site reactions which in the grand scheme of things weren’t that big a deal. tecfidera also gave me side effects, nausea and some puking, the risk of diarrhoea and the mad flush. the mad flush makes me go bright orange and can feel like prickly heat. i was 50 when diagnosed but you are a lot younger. i suggest you find Katy79’s posts because she is the best advertisement for lemtrada. however remember that this is your life, your body and your choice. your ms nurse ought to be able to advise you about DMDs. ask if you can be put in touch with anyone on lemtrada for a first hand experience. good luck

Katy79 has a post on everyday living about Parkruns. she holds down a high powered career and does a lot of running.

Hello

You seem to me to be a bit shell shocked by your diagnosis and the whole middle of which drugs you could / should try.

Have a look at: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid if you’ve not already seen it.

You seem to be asking about two very different drugs, from either end of the spectrum of DMDs. And also thrown into the mix is the thought of another child.

Lemtrada is certainly an excellent drug, but it does come with the potential of some fairly serious side effects. But, if it works for you, you may find that you’re fit and healthy within a couple of years and are never troubled with any MS symptoms again. Carole is right to point you towards Katy79s posts about Lemtrada, she’s very positive about her experience and very happy to answer questions about it.

Copaxone on the other hand has a much lower risk profile, is less side effects (I had none for about 5 years, until it stopped working for me), but going with that is a much lower relapse reduction rate. However, as far as I know, you can take Copaxone while trying to get pregnant. You’d obviously need to discuss this with your neurologist.

MS does take time to get your head around. Mourning the old you doesn’t really stop, I still miss the old me after over 20 years. I don’t think you need to accept it, get positive about it or stop wishing it had happened to someone else, not you. It truly is an unfair and crappy thing to have to incorporate into your life, just when you were feeling all happy and ‘new mumish’.

Feel free to explore your feelings and emotions on here while you get used to your ‘new normal’. Hopefully you can find a DMD that suits you right now.

Sue