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18, confused, scared please help

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.

Hi Rema,

First of all i am very sorry to hear of your diagnosis and at such a young age must be very hard.When you first are diagnosed it is a scary time, especially if you are not getting the support you need. You have come to a great place where there are lots of friendly people who will always try to help.

I think the first thing you need to do is go and speak to your GP and ask about your MS nurse, she should be your first line of support if you have questions about your MS. Maybe ask your GP about some form of counselling? It can be very helpful to talk to somebody and offload all your emotions, it can help you to understand a lot of what your feeling too. If you are not ready for that you can always try the MS Society helpline 0808 800 8000 and speak to a counsellor on the phone.

Have you spoken to your learner support team at college and explained what has been happening with your health? Not just the MS but the depression and strained home life also? Please do not ever think that any of this is your fault, you didn’t ask for it! You are not responsible for your parents financial situation, you need to make your own life choices. Have you contacted your mental health team about moving out again, assuming this is still what you want?

With regards to how to live with MS - there is no simple answer really it’s about finding what works for you. There is lots of support out there including physiotherapy, counselling, DMD’s etc… you just need to make yourself heard. I would start with your GP or the helpline, then see how things move forward and go from there. Things will not always be this hard :slight_smile:

Best Wishes

Laura x

Hi, I haven’t been dx yet but my symptoms sound a lot like yours. I too had itchiness, bells balsy on one side, nystagmus and I also put it down to SSRIs. For years I thought the clonus in my right leg was because of the SSRI I was taken. I’m glad you are getting treatment and you got diagnosed pretty quickly! I can’t help you much but it was nice to hear that somebody had similar symptoms. People seem to vary greatly. Good luck, keep posting here. They are a helpful lovely bunch of people

[quote=“Laura P”]

Hi Rema,

First of all i am very sorry to hear of your diagnosis and at such a young age must be very hard.When you first are diagnosed it is a scary time, especially if you are not getting the support you need. You have come to a great place where there are lots of friendly people who will always try to help.

I think the first thing you need to do is go and speak to your GP and ask about your MS nurse, she should be your first line of support if you have questions about your MS. Maybe ask your GP about some form of counselling? It can be very helpful to talk to somebody and offload all your emotions, it can help you to understand a lot of what your feeling too. If you are not ready for that you can always try the MS Society helpline 0808 800 8000 and speak to a counsellor on the phone.

Have you spoken to your learner support team at college and explained what has been happening with your health? Not just the MS but the depression and strained home life also? Please do not ever think that any of this is your fault, you didn’t ask for it! You are not responsible for your parents financial situation, you need to make your own life choices. Have you contacted your mental health team about moving out again, assuming this is still what you want?

With regards to how to live with MS - there is no simple answer really it’s about finding what works for you. There is lots of support out there including physiotherapy, counselling, DMD’s etc… you just need to make yourself heard. I would start with your GP or the helpline, then see how things move forward and go from there. Things will not always be this hard :slight_smile:

Best Wishes

Laura x

[/quote] Thank you much for your comment Laura. I have managed to speak to my college and they were nice enough to give me a 6months leave and start the course again. I’m scared about moving out now as I don’t want to be on my own incase it all happens again but if my household goes back to the same old ways I will have to move for my sake which is selfish but I feel it’s something that would be good for me rather than stay in that situation. Thank you so much for the advice, I will try to contact the ms nurse. I’ve been out if hospital with this diagnoses for 3 weeks and have not started any medication or had an appointment with a nurse. Is this the normal time scale to make contact with a patient and to not start on medication? Thank you so much for your comment

Good news about your college, it will be good to have some time to get your head sorted out. The trouble with MS is nobody can predict when or how things will happen, so you have to just do what you think is best. Three weeks is not the longest time I have heard of, but it would not hurt to chase things up. Gp probably is your best bet right now, explain what has happened and ask for contact details to the ms nurses. You can contact them you don’t need to wait around. The neurologist will be the one to decide about treatment, there are some criteria that need to be met first. Your nurse will be able to explain it all to you better than me! I was only diagnosed in Feb so its all new to me too! So speak to your GP and get things moving, good luck and let us know how you get on. Laura x