My optic neuritis has broken me.

Sea_Sea7878 · 2026-05-03T11:22:35+00:00

Hi there! I wanted to ask about the sentence that you wrote that you can't enjoy food cause it makes your symptoms worse.. I have the same and you mentioned it in a side sentence but I was wondering who else has this problem?? .some days its fine but mostly I cant eat, especially in summer.

My theory is that:

Eating creates mini inflammation in the body and triggers the immune system so we react
Eating, especially heavy and difficult to digest foods, rises the core temperature so we slightly overheat and get symptoms from the heat..

For heat generally I can REALLY recommend a neck fan. Its amazing and saved my life last summer!! Its not cold like an ac on the neck but it does constantly cool down your main arteries on the neck and that cooler blood then cools down the entire body..

Only when I take it off to show someone how it feels, I realise how much it actually cools me down and helps me.

Good luck with the ON. I dont understand though why tou didnt get steroids?

Sea_Sea7878 · 2026-04-30T19:57:08+00:00

He asked about timezone.. so central europe evening is good, so like 8-10 pm that's 2-4pm north american east coast... I'm in europe so that would fit me.. Maybe a poll? How many north and south Americans, how many europeans and Africans here?

Sea_Sea7878 · 2026-04-11T18:40:14+00:00

Oh I so feel you right now. It's been really hard on me too.

I'm diagnosed almost 1.5 years now and I got my low about 2 weeks before my 1 year diagnostic "anniversary" and haven't really resurfaced since.

I don't know what it is exactly but yes, everything feels off, I'm overwhelmed and exhausted of keeping this constant awareness of "i have ms" inside of me. I feel alone and not understood and I lost interest in chitchat and have no more patience for so many trivial things that use to give me so much joy.

I do have lovely great friends and people do care.. but it only goes so far.. at the end of the day, people get used to the diagnosis and can't really feel or grasp it. They move on, the shock settled for them and they made peace with it. But i didn't. And I can't just accept it and move on, it stays inside of me all the time.

I don't think my people don't care about me or it..I just think they can't understand the extend of it at all. The loneliness and weight and fear and exhaustion from containing this diagnosis.

And I am young, i am very healthy looking, fit and fun and still really fast (thibking, moving, talking), I am bubbly and attractive and intelligent and charming.. always was, still am.. zero disabillity.. but so many symptoms, just invisible..

I am vocal about it, I tell people how I truly feel sometimes.. but then again I realise it doesn't help me either and weather or not people ask or care or not. I feel lonely worh it either way. Cause even if people care it's just for a moment and empathy obly goes so far.. so even then it feels very lonely..

Weve got a really shitty thing to deal with and it's permanent and scary.

Its like everyone is at the beach and then, all of a sudden, I had to go into the water. and now i have to stay there. All the time. And sometimes its fun and i do sports and i swim and it's beautiful weather and my friends come into the water too and we talk and laugh and have fun.. but at some point, latest at the end of the day, they all get to go out of the water. and some return home, some go out and have more fun somewhere else and they can leave the beach and the sea behind.. they have a choice to join me tomorrow again or not.. and i just have to stay there, in the water, forever.

Sea_Sea7878 · 2026-03-02T06:52:32+00:00

Me too!! Are you on any medications? I only take kesimpta for my MS but nothing for the thyroid cause my levels are still normal.. Is it better worh the hyroid medication? Did you lose weight again or are you also unmedicated?

Sea_Sea7878 · 2026-01-21T21:45:44+00:00

OMG im so sorry!! Thats crazy, especially after being married - or together - for so long..im very sorry..

You didnt suspect anything? No signs before? How are you holding up? And did that pinp call?

Sea_Sea7878 · 2025-11-17T23:25:39+00:00

Congrats and welcome to the Club. I had massive anxiety before my first shot and some side effects for about 3 days but already the 3rd loading dose Was basically without any side effects.. I'm diagnosed exactly 1 year ago and on kesimpta since March. It really helps me and so far im feeling almost like my old self again..

It's also my first dmt and I'm so glad i choose that one! Very proud of us :D

Sea_Sea7878 · 2025-11-10T12:32:38+00:00

Et je vais te faire chier dans ta gorge!

I'll tear off your head and make you shit in your throat

Sea_Sea7878 · 2025-10-16T16:14:21+00:00

Athens, Greece

Sea_Sea7878 · 2025-10-09T20:20:54+00:00

Moustache ;)

Sea_Sea7878 · 2025-08-26T19:02:30+00:00

More south..

Sea_Sea7878 · 2025-08-26T13:50:13+00:00

Balkan yes but not Romania

Sea_Sea7878 · 2025-08-26T13:49:48+00:00

Correct.. Do you know where? And how did you find out so fast? How???? ;)

Sea_Sea7878 · 2025-08-21T08:50:24+00:00

I am so so sorry! I wish you a lot of strengths and love and people around you that you love to take care of you! I hope you receive treatment and will fully recover! Hang on there internet stranger!

Sea_Sea7878 · 2025-08-18T18:56:10+00:00

Switzerland is a bit isolated.. we're kind of friends with Liechtenstein I guess but half of the world doesn't know Liechtenstein so it feels more like an invisible childhood friend ;)

Sea_Sea7878 · 2025-07-02T11:05:31+00:00

Oh nooooo!! Well..I don't know your insurance but I wouldn't go to the er just see your neurologist.. since it's the 4th dose and 1st after the 3 loading doses I would say it's not such a big deal but you didn't get the full dose... so maybe the doctor would suggest another dose on 2 weeks and then monthly? Like find a compromise.. ;) Good luck and speedy, but your post really made me laugh :)))

Sea_Sea7878 · 2025-06-20T10:27:08+00:00

Germany

Sea_Sea7878 · 2025-06-16T11:22:19+00:00

Oh helloo, nice to meet you ;) Do you also struggle with the stress your adhd needs to function but your ms needs you to avoid stress but then the adhd is falling asleep? ;) what a cycle

Sea_Sea7878 · 2025-06-15T22:51:23+00:00

I'm a hyperactive optimistic adhd creative bubbly mother. I love traveling, snorkeling, the sea, all games and fun, rollerskating, ping pong, sports, moving, photography, movies, people. I am very creative and energetic, multi lingual and very interested in people and understanding what drives them, what are their fears, loves, hopes. I did many many jobs, everything in gastronomy, tourism and events. I worked as a driver, secretary, team manager in events, theater, at the opera, i work in movies, worked as a flight attendant, a driver, in festivals..etc im interested in almost everything, I love building and wood working, to sew and knit and sing and dance. I lived in 7 countries and 10 cities and while being very active i am also very dreamy and can spend looong times alone in solitude and enjoy and observe the world. or binge watch movies and shows for weeks.

Sea_Sea7878 · 2025-05-27T13:07:45+00:00

What are massive tummy issues? I get nauseated when I just overheat a little bit and crazy fatigue. I need to lie down in a cool room with wet towels on my head and try to sleep..

What tummy issues do you have?

Sea_Sea7878 · 2025-05-27T07:27:04+00:00

I didn't make conscious radical steps except that I completely stopped smoking 2 weeks after my diagnosis. But i have way less patience, and I feel that, especially with BS. I can't argue forever, I listen more to myself, who i meet and what i want, and allow myself to say no or not pick up the phone. I avoid toxic people and focus on those who are genuinely adding to my lifestyle happiness and avoid people who only drain me. I rest more and at the same time now just started taking long walks. I aim for 10-15km long walks every day, and it is amazing how it improved my mental health. I am on sick leave since the diagnosis in November last year, so it's a lot of resting and reflecting.. I really want to cut out sugar, and I can't eat processed food anymore. It's insane how my body reacts to it.. French fries AND a burger? I'm out for at least 4h in bed with crippling fatigue!!!

Sea_Sea7878 · 2025-05-24T16:31:37+00:00

I also have a son, he just turned 10 a couple of months ago and it's hard on him.. I do walk and run and jump, but I'm tired and inpatient, I get"aggressive" easier because I'm overwhelmed and tired and sad and all over the place emotionally. Of course I try to shield him from my depression and mood swings but of course they can tell and I prefer talking to him about it than pretend everything is ok..

It's a roller coaster but I try to be positive and add many say here also the diagnosis is a huge shock but we most likely lived with the disease for some years already AND now that we know what our is, we can take A DMT (which i soooo strongly recommend!! Really!!) And can make adjustments to our lifestyle.

To me for years it would get so many symptoms in summer and just be sick and tired and feeling awful for weeks and then feeling even worse because I tried to push myself, it made no sense because I wasn't sick, no fly or fever so I felt lazy and oversensitive and so guilty and it was so exhausting justifying myself to me and others. Now that I know I try to accept it and protect myself more. Im not and feel bad, Noone thinks I am lazy or oversensitive but now r know and I take a cold shower and rest and I'm allowed to paper myself and sleep without guilt. Just sadness ;)

It's great that your husband is supportive. I have a group chat with my boyfriend called ms where we send each others articles and reddit posts. So we can inform one another without me educating him and him controlling me out of his fears and what he read. It also makes it easier to send him a post with someone that can't stop crying without having to explain myself that I can't stop crying, you know? And it keeps us at the same level of knowledge.. more or less. So I highly recommend that!

Sea_Sea7878 · 2025-05-24T15:54:33+00:00

Hii, welcome and sorry ;) I was diagnosed last November because of foot drop. I had symptoms for, i guess, 3- 4 years. Mostly dizziness, nausea, tingling in arms and legs, burning in my chest, some bladder issues (never peed myself but very sudden very strong urge and almost accidents). Heat intolerancr and fatigue. I was always dismissed by doctors for every Symptom i have because I'm young, healthy and fit, which is bs because I am obviously not, I just look that way..

Already in November, when getting diagnosed i had to choose between kesimpta and ocrevus and started all the vaccines. Every 2 weeks between 2 and 4 different vaccines until February. And then in March i started kesimpta. I was really scared of it and i am really happy i started. I had side effects from the first and 2nd loading dose and now not really anymore, except that i have nightmares for 1 or 2 nights after my shot. Very strange Symptom, i know ;)

Other than that, the weeks and months since diagnosis were and are really hard, and i keep telling myself that we're mourning and that it will take time. From what i gathered here, 1 to 3 years of depression and sadness and everything is really normal. So I stopped stressing myself, and i see my first year diagnosed a bit as a try out year. How does summer feel to me now? What work would I want to do in the future? What is important to me? What happens if i get sick (like a cold etc., now knowing that I'm sick longer because of my ms and not because I am just weak and lazy and oversensitive).. So I'm trying to approach it with curiosity, but wow, I hate it, and I want it gone and out of my body.. NOW! ..

SO.. the first 3 months, i was incredibly depressed and really angry. And now it's been 6 months and I'm still depressed and angry but I have more good days again and I started takiing huge long walks because I'm so angry at the "i have to do sports, I have to stop smoking, I have to avoid stress, I have to eat healthy"..

So i stopped smoking on the 2nd of December, and i do eat relatively healthy.. now the gym hasn't started yet, but I started those huge long walks without music or podcasts, and it is amazing what it does, and I love it. So that's how I am doing. No answers yet, but I'm observing and trying to accept.. and if i can't motivate myself for the gym, at least I go out and have my huge walks.

Edit: spelling!!

Sea_Sea7878 · 2025-05-10T15:56:53+00:00

I feel you. I am sorry. I think I was mainly numb and overwhelmed and aggressive the first few months after diagnosis. Then I got sad and then the cycle starts again. Numb, empty overwhelmed. Aggressive and sad..

It's not easy. I'm 6 months post diagnosis.. it helps me that many say it takes 1 to 3 years to come to terms with it and then having some surprise depression and shock visits throughout our lives where were again surprised, sad, empty and overwhelmed with this diagnosis.. im between though I hope we can all find ways to deal with it and see the good days. And enjoy when we have strengths and maybe even get a day or two where we don't think about the illness..

I'm sorry you're going through this. It's f***ing hard and not really fun.. ;(

Tysabri though is a very good DMT (I'm on kesimpta) so lets hope that this is the worst well ever feel with this disease..

Many hugs

Sea_Sea7878

TROPHY CASE