Hi there, thanks for reading my post. I was diagnosed with RRMS 3 week ago and have been left feeling confused about what’s to come next. I had a really bad episode which lasted 2 months, it got worse within that time then better with new symptoms popping up within that timeit started with me walking like I was drunk, couldn’t feel the left half of my face including my tongue, double vision, slow thinking, vomiting, nystagmus (which I didn’t know I had only until after I was diagnosed) and weakness on my left side of my body. I didn’t know what was happening to me and assumed it was side effects from an antidepressant which I stopped taking and three weeks later I was still left with these strange things. I knew their was something wrong after that. My family didn’t believe me at all and I was called an attention seeker, lazy and blah blah blah. No body knew what I was going through and just to get off the streets away from the cold when I was forced to go to college or to go out in general I put myself in dangerous situations just so I could sit down without having to embarrass myself walking in to things and being sick and not being able to see. I went to the doctors and she knew something but I said it must be the antidepressant but she still seem concerned I had to go back again after a rash developed from being to itchy everywhere and she tested my eyes and that’s when she sent me to hospital where I was admitted for 11days. Had the who MRI’s and CT scan as well as a lumbar puncture. I was told by a doctor that I have ms and if I wanted to know what it was to go online and have a look and to write down questions I wanted to ask, then another doctor came in but he was a lot nicer after I had my formal diagnosis by a neurologist. It never sank in much as I didn’t know much about it. Now I’ve done research by myself and it’s scared me… I’m scared for the future, the injections, progression… Basically everything. After I was diagnosed my parents finally understood and apologised and my mum took the news pretty hard. But I dont want to show it but I’m so angry at especially my mum for not believing me at the start and for forcing me to go out to go to college which I was in the verge of being kicked out of because i physically couldn’t go and shouting at me to physically go out and hand out cv’s which I couldn’t do. I couldn’t even go to college. Somedays I would sit on a stairwell in our apartment building from 9 am till 7pm to make it look like I was going to college just so arguments could be avoided. Or if get someone I barely knew to pick me up in a car and sit in their house. The only person that was there for me truly was my brother. My house is stressful with loads of arguments daily about money and me not making my mum proud, but it calmed since the diagnoses but its still fresh. I’m scared it will go back to the same way as mentally and physically I can’t take this no more in my life. I was meant to move out on the day of my admission to hospital but had to call my mental health team to cancel. Even with this situAtion caused stress at home, how I’m hurting my family by moving out how my dad will loose his money and maybe our flat and it will all be my fault. The reasons I was moving out was because the feuds in my house worsened my depression.since being diagnosed with ms I’ve lost the only 3 friends I had due to not being there and in general not caring and that hurt. It was an eye opener to see who cares for me and who doesn’t. That’s the only thing I’m thankful to ms for. I haven’t seen an ms nurse yet or started on injections and haven’t had any in person advice or explanation from any health care professionals. I feel like they’ve left me to my own devices to deteriorate. I really would like some support from anyone with ms, any advice, literally anything to do with ms like how to live, what to avoid, how to get through episodes, your experiences… Anything please and thank you so much.
It is very difficult for anyone who has not experienced it to be able to understand MS and the impact it has. If you can, it would be an idea to try to forgive your family for not being there initially. It does sound as if you have have a lot going on in your life, especially at home. As you have relapsing remitting MS it would be a good idea to talk to your consultant about disease modfying treatments which should slow down the progression.
The research is scary, but not everyone has everything and rarely all at once. MS is different for everyone and to give you an idea my husband has Secondary Progressive but carried on working until he was in his 50s. The treatment can only get better. Keeping a diary may help to keep track of your symptoms, treatment etc. You will learn how to manage relapses, but give yourself time to get to grips with the diagnosis. Contact your hospital to find out if they have an MS nurse and give him/her a ring.
There is a lot of information on this site that will help you, but take things one step at a time. I wonder if you can contact your old friends and explain to them what has happened to you. You may find that problems started because they could not understand how you were feeling. There is a section on the forum for young people and talking with others of your own age will help too.
The best advice i can give you for the mental side of things. Rise abvove, live life,smile and be positive.
Do not let MS become who you are.
You will get through this. I promise x
Hiya sounds like you have got a lot of issues just try to keep your spirits high and as my wife always say don’t let ms control your life,you can control your life with ms…
I was diagnosed 11yrs ago,
To be honest MS must hate me lol I am Stubborn and Independant pain in the Butt to MS and those around me.
i do what i can when i can and if i can’t do it how i used to i find another way around trying to get what i wanted done.I’ve lost count on the amount of people saying i shouldn’t be doing things. For instance if i have got an event/occassion happening i make sure i rest a few days before go then enjoy the event/occassion and do whats been planned, yes i suffer after But at least i did it or went there I’m also not on MS medication as the first 2 different lots i tried didn’t help. So my GP has helped me with pain relief.If not able to do anything i know that it’ll wait till i can do it.
I tell my kids when they try it on thinking they can get away with anything, if i don’t get you now i will later when least expect it.
It works too !!
MS can’t Beat me so nothing else can either.
Keep Smiling Stay Positive you’ll take control of your MS when u get used to your symptoms and find your way of dealing with them.
Its crazy when you go to the Hosp etc and they ask what symptoms you have but because you deal with them everyday you tend to forget some of them because it’s normal everyday symptoms.
So don’t give up just make MS wish it never picked on you. Give it more grief that it gives you kick MS Butt.