@Schwalbe 

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Schwalbe

Hello everyone, and: feelings since my diagnosis

Hello everyone. I just wanted to introduce myself and get some thoughts out. I'm a 26 year old from Germany. Somewhere around the middle of this year, I noticed surface level numbness in the feet and leg area and went to see a doctor. It took some time to get an MRI done, I then was send to hospital based on the results. I spend a week there getting Cortisone therapy. Afterwards, I got diagnosed with MS. I take 2x 240mg Tecfidera every day since then. Let's start with some positives: 1. I barely have any symptoms. 2. My chances of having a mild / no progression while on medication aren't bad. 3. I have no bad reactions to the medication. Physically, MS hasn't really impacted my life in a meaningful way. What I notice: I have some temporary flare-ups after training (running) - but just light numbness, strength and coordination still work. I also think it altered my vision. Feels like light static and some brighter dots / shapes, as though I had looked into a light for too long. The effect is extremely subtle, I mostly only notice it when reading in a dim environment. Both symptoms are so light, I'm not even fully convinced I'm not fantasizing having them. Are there people with similar vision alterations on here? The biggest effects MS had on me so far are psychological. I'm still in the process of... processing the diagnosis. I initially took the diagnosis like a champ. But I think that was me suppressing most thinking about the topic. The following events really triggered the processing afterwards, including bad thoughts such as: I'm certain I'm going to need a wheelchair, I'm certain I will die early. - Talking to people about it. - Thinking about which friends and family members to talk to about it. - Thinking about when I should tell a date about it. - Even unrelated health topics such as COVID symptoms. - Or just walking up the stairs because I remember how hard it was to walk up the stairs after hospital. The bad thoughts are usually accompanied by me crying and checking Google to find out how other people deal with MS: with the stress, the uncertainty, work, ... A big problem with those thoughts is that bad days easily seem to spiral into bad weeks: I lose some sleep because I Google about MS at night, or just generally due to MS stressing me out. Can't focus at work because of lack of sleep. Thinking about what to tell my colleagues triggers more thinking about MS. Lamenting about lost time and productivity due to me thinking about MS or feeling bad due to it. Not enjoying the holidays as much because half of it was spent in a bad week, making me even more miserable. I hope you get the idea. I think that's all I have to say. I'm mostly interested if people have similar vision alterations as me, and maybe if you have experienced similar thought spirals and bad days turning into bad weeks. And of course any tips are appreciated.
@NorasMom

In recent months I've had to use more lighting when I read, but mind you, I've been dealing with this for about 45 years now. With few symptoms and getting on a good drug right away, you have an excellent chance of never reaching the point of needing a wheelchair or developing the complications that lead to early death. I literally grew up with MS without knowing what was wrong, so I just adapted as I went along. I'm luckier than most in that, because the diagnosis has been nothing but a relief to me. If you don't count the odd symptoms here and there and the few changes I've had to make to my routine over the years, I've had a very normal life. It's only been within the last 2 years that I've had to quit working, but I'm enjoying being at home very much! I move more slowly than I used to, and I can no longer carry heavy loads, but I still do pretty much everything I've always done. I live alone and look after myself, although I have given up most driving. I use a cane when I go out, but I move around inside the house without one. I haven't really answered your questions, but it seems to me that you're still working through the grief. That's only normal, but don't let yourself wallow. You're still young, relatively healthy, and there's no reason you can't do whatever you want with a few adaptations here and there.

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@Clary

Welcome @Schwalbe to the chat. Coming to terms with a diagnosis is super hard mentally. There are so many “what ifs”. I guess finding a way to live for the moment can help. I always try to practice gratitude and mindfulness. Unfortunately, I am not perfect and the worries can creep in sometimes. I find this group super helpful. Hope we can be helpful for you too 😊.

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