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Scared and feel like my world is crumbling

Hello, I’m a 29 year old female who is waiting for my mri results. I have been told it is likely MS. I currently have had symptoms 2 years ago and it caused my career and relationship at the time to end. I’m now finding myself in the same situation - my career is going well but because of my symptoms I feel as it is affecting my relationship. My body is so week and tired and my skin feels sore and fuzzy all the time. I’m still on steroids but feel like I am not improving. Is this normal? How do I get back to feeling like myself. Is there groups that I can attend to talk to others about it? Feeling very alone and scared and just want some help.

Bless you. It’s totally normal to feel that way. MS is a big deal and can feel overwhelming. I was diagnosed in October last year and I’m slowly getting my head around the change but it hasn’t been easy. I try to tell myself that tomorrow will be a better day and when I’m feeling a bit better I try and feel grateful for what I can do. I gave heard that steroids don’t always make you feel better so don’t worry about that. They’ve helped me in the past but I know it’s not the same for everyone. Have a look on the MS society website for local groups. This forum is a good place to start. Keep smiling. Jo

Hello Mango

MS is cr@p. No other word describes it as well. The biggest problem with MS is the uncertainty of it. We don’t know when relapses will strike nor how long they will last. We don’t know whether the steroids will work on this relapse regardless of how well they did or didn’t work last time.

We don’t know what the future has in store.

Relapses can react very quickly and well to high dose steroids. But sometimes they don’t. Relapses often feel as though they will never end. But most do, even when they are so slow to remit you don’t notice the symptoms are improving.

If you have a look on the tab at the top of this page marked Get Involved, scroll down to the bottom; there’s a section on what is going on in your area, maybe there’s an MS centre, or an MS support group, or some kind of exercise class near to you (you put in your postcode and relevant local events will pop up). Maybe there’s something near to you.

Regardless, there’s always us. We may only be ‘virtual’ support, but we do try to help people when they need it.

I hope you get the results from your MRI scan soon and that if it is MS, you are given the support of a good MS nurse.

Also, that you can talk to your partner and discuss what this whole experience is doing to your body and mind. Hopefully your partner will be honest and open with you about their fears and concerns. You could even find that through talking about your feelings you are closer not further apart.

Keep talking to us here anyway. Let us know what’s going on and what your test results are when you get them.

Sue

Thank you for your responses, it is nice to know that there are others out there to talk to about this. I really appreciate it. I will keep you posted with my results on friday :slight_smile: x

Hi Mango,

How did it go today?

Best wishes,

Anthony

Hi AnthonyA,

I was diagnosed with RRMS and told I will be going on medication in the form of an infusion every 6 months. I dont think it has sunk in yet and have pushed the diagnosis to the back of my mind and focusing on getting through this episode at present. Cant feel my feet as the feel so numb and swollen, just want it over so I can get back to normal! How are things with you?

I’m not sure what to think. Am I imagining the symptoms of extreme fatigue, cognitive impairment, tingly left foot and leg with spasms. In May, I went to my GP, who referred me for a brain MRI, whilst I waited for a Neurology appointment to come through. I saw the Neurologist today, who says as the brain MRI was ok, no real symptoms of MS [he said I sounded disappointed I didn’t have it!] I want to know why I feel so awful all the time]. I am going for a spinal MRI, which will be another 6 weeks. In the meantime, “do mindfulness and join a gym”. Now I feel worse than I did before, he has made me feel I am making the symptoms up. Was told, “sometimes we imagine the symptoms are worse than they are”. I don’t know what to think now, I’m in limbo again. Obviously I don’t want MS, but what is it? Anyone else have a similar experience?

I know that feeling Rosie, I haven’t had a spine MRI or one with contrast, although I do have a weaker left side which the neurologist told me. My big toe on my left foot feels funny and my ring finger and little finger on my left side feels funny too. He has said that he wants to see me again in April next year. One thing has got better and that is my left hand has stopped shaking. I was very lucky my lumber puncture was negative, so I don’t think I will be having another but I do hope that I will have another MRI to compare to my last one, so I have to wait for that. Hopefully I will negative there to.

Kay

Hi Mango,

You should feel some sense of relief that you’re no longer in limbo. Not that it’s any compensation for the diagnosis, but at least you know exactly what you are facing. There has been some tremendous progress in the last few years with drugs that treat the symptoms and progress of the disease. And if one doesn’t suit you then there are alternatives.

I’ve got the primary progressive type of MS so my situation is quite different from yours. As you will know, your RRMS means that your current episode will pass and whatever Disease Modifying Drug (as they are called) will help to prevent a further relapse. I’m not familiar with RRMS so I hope that other people on the Forum will be able to answer any questions you have better than I can.

Please feel free to join in any discussions, or start your own thread on a topic that interests you. This Forum is an incredibly understanding, sympathetic and friendly place. I’ve made some good friends over the years as we really do “get” each other.

Best wishes,

Anthony

Hi Rosie, When I had my first epiosde 2 years ago I felt like the doctors thought I was making it up. I remember sitting in the hospital whilst they poked and proded at me, confused by me saying I feel numb everywhere. After about 3 months they did an MRI on my brain and spine and found it was transverse mylitis (this as now turned to MS). I found that keeping fit and healthy really helped me to go two years without an episode. I would suggest joinging the gym, if you dont already go, or doing some form of exercise, it will make your body strong and keep you healthy and mentally happy. I hope your MRI scan gives you some answers x