Hello everyone! I am 32 and was newly diagnosed with MS -less than 2 months ago and I am struggling with the symptoms. I told myself that I do not want MS to take over everything that I do and everything that I am, and I do not want it to affect my daily life. Easier said than done! MS started with a very foggy vision at the end of January and I visited a zillion doctors before I got a diagnosis. The eye is not fully recovered yet, even after a cortisone drip and while I am waiting on it to recover on its own -doctor’s orders, I have to say that I have been feeling some pain in my eye again; as in hints of electricity waves going through the eye for a millisecond. I told myself that might be normal, but new symptoms have been coming my way that now I am confused. Yesterday I was feeling vertigo and today I woke up with numb hands and legs that feel as though they are made of bricks. I know that sometimes when you feel sick you start convincing yourself of non-existent symptoms and then there is also that staying at home factor, which makes you very alert to everything your body does/feels (as opposed to normal everyday life where you are occupied with work and activities) - and I am going a bit crazy here. I do not know anyone with MS around me and if I talk about this with my family, they are only going to freak out or cry. I honestly think they took the news of my diagnosis a lot worse than I did, so I stick to telling them that I’m fine. Another thing is, I’m taking weekly avonex injections and I was under the impression that it keeps the symptoms under control. It would be appreciated if someone here could share their insight on this and experience on the whole thing. Thank you!
I can relate to what you said, Sue. I generally don’t mention MS at work (one boss knows), because I don’t want to “be” a disease or, worse, an object of pity. I’m 57 but I remember at 21 having an annoying black dot creep into my field of vision, then dart out again. My hands sometimes felt like I had mittens on. I was at college and chalked it up to stress, until couldn’t plant my foot correctly somehow and down I went. Long story short, all this kind of “stuff” as I put it, comes and goes. Now I’m at home, and feel a relapse coming on (including the little black dot), but also wonder if I’m just over sensitive and paranoid because of the virus. I’m not on a medicine, having always tried more or less to accommodate myself and try to be healthy. But you’re not alone.
Hello Sue
It’s true that living with MS can become a lonely place. You don’t want to worry/upset your family. Nor do you want to be constantly complaining of symptoms!!
Is it possible that Avonex isn’t working yet? Or isn’t working at all for you?
It actually seems crazy to me that someone diagnosed recently should be started on a less effective, old injectable like Avonex rather than a newer, more effective oral therapy (Tecfidera?).
Why not phone your MS nurse and talk through your symptoms and worries? S/he might be able to ease your worries - perhaps Avonex will work in terms of preventing new relapses given a bit of time.
The fact is that relapses, even given steroids to try and shorten them, can take months to remit. And may not completely lead to total recovery. You might find that your symptoms will very slowly get better, almost without you noticing; until one day, you’ll suddenly think ‘oh, my eye feels miles better!’
Starting a health diary is a good way of keeping track of how you feel. Either daily or weekly you could write notes on how you’re feeling.
Meanwhile, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid that will give you some insight into other disease modifying drugs. Also https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses You’ll find that there is a wealth of information available from the MS Trust, or just look at the About MS tab at the top of this page.
Stay well.
Sue