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Scared and in Limbo

Hello people. I’ve never written in a forum before, so I hope I’m doing this correctly- not helped by by inability to type, my fingers keep forgetting to press on the letters. Anyway, i was just wondering if anyone had any advice on how to cope with that horrible ‘not knowing’ feeling that you have in between the first reach out to the doctor and a diagnosis either way?I’ve been getting weird things happening to my body for two months now- burning hot water on my legs, millions of little bugs inder my scalp, violin strings twanging in my arms, blurry useless eyes, memory problems, lack of coordination and feet and hands that feel like they have been crushed by bricks… but not all the time, just when i least expect it! I went to the docs and he did some physical tests and it seems my left side is just not working properly, and apparently the rice crispy crackle i get down the centre of my back, when i put my head down, is pretty bang on with MS. I now have to wait for a neuro appointment… which is the week before Christmas. (pretty sucky as I have two very young children- my beautiful baby boy is only 8 months old and my gorgeous girly is 6). I’m very lucky to have a wonderful husband, who is everything to me. I’m trying to be so upbeat for him, so positive, but the truth is that I’m scared. Very scared. So very scared and so very angry. Can anyone tell me how to make these vast weeks until i see a specialist go more smoothly- it won’t do to let the loved ones see me crying! (Although the truth is, that I’m crying as i write this- silly fool!) Thank you in advance xx

Don’t apologise for being scared, angry and upset. You need to be able to feel these emotions and if you have no other outlet for them come here whenever you need to. I had a very quick, sudden diagnosis (relapsing remitting ms) so didn’t have to wait as you are. However, I still feel in limbo as I don’t know how this is going to pan out or what will happen next. I get that you don’t want your loved ones to see you upset but do try to talk to your husband. He is probably doing the stiff upper lip just like you are and if you can share your fears it might help. There is also the ms society helpline to ring 0800 8008000 if you want to talk to someone neutral. And remember, it still might not be ms and if it is, it doesn’t mean a complete end to life as you know it. Hope you are ok - please let us know how you are doing.

I am sure that the majority if not all the people on here can empathise with how you are feeling, and whilst the intensity of the fear may subside we have all travelled down that path. I guess we all cope with it differently but certainly patience is a virtue. It is so frustrating and I often wonder if I would be far better emotionally if I could get answers as quick as I want them, ie straight after the MRI. But we have had to wait and wait and wait some more. I was paid to see my initial appointment with the neuro privately and then transferred to the NHS. I am currently awaiting MRI results. I am a strong character (well I thought I was before all this) and found it difficult to express how I felt. People would say that everything was going to be ok and pat me on the back when I really wanted to discuss what if it wasn’t. There may be people around you who could share that burden and offer you uncomplicated support ( ie someone away from your family) Why won’t it do to let your loved ones see you cry, maybe they would like to see this side of you, to see that you as scared. Maybe they are as scared as you, but trying to keep upbeat for you. Yvette

I sympathise. A big hug for you! There is so much wonderful support here - do check in often. Make use of the helpline, I did and spoke to a lovely lady. It helped me to have the courage to take action. You’ve done a huge thing for yourself already by just posting here! Wishing you calm, peace and patience :heart:

Yvette, you mentioned something that struck a real chord! My mum keeps saying ‘It’ll be alright’ and i nod and i smile, but inside I’m screaming ‘WHAT IF IT’S NOT???’ and then i feel guilty for being so negative when everyone is trying so hard to be positive. Sunflower, thank you for your kind words, I really do feel like I’m suddenly not as alone and I really do hope that you are well. I hope no one minds, but I asked my husband to sit quietly and read my original posting and your lovely replies. I left him alone and when he finished he came to me with red eyes and we had a massive cuddle (and then fish and chips). I suppose it’s a way for both of us to think about the things that we are both too scared to say out loud.Thank you. Just sitting tight now (well as tight as I can when my legs are on fire!) and yes, patience is a virtue (why was I not more virtuous in the past- I’d have had so much more practice at it!) my nerves are shredded already and it’s going to be a long wait. Reikiblossom- thanks for that fantastic hug, I think i may need it in the coming weeks! xx

Hi Housemouse, if this does turn out to be MS it is not the end of the world. As you are young it is probably RRMS and this can be well controlled by DMD drugs etc. As this is also the most common type of MS there is a lot of research going on so hopefully there is a cure in sight. While you wait for your appointment take some vitamin D, B vitamins and cod liver oil.

Take Care and Big Hugs to you.

Moyna xxx

Hi Housemouse. You’re not alone in this as you have everyone here to support you. I’d be lost without this forum as my hubby doesn’t talk about what is going on and my best mate pretty much refuses to as she is of the opinion I’d be pretty much in a wheelchair by now if it was ms so I am left to get on with it until I found this lovely site Axx

I am still undiagnosed and scared like you. One thing I would say is to ring the neurologist’s secretary and ask for any cancelations that come up. You never know, you just might get your appointment quicker that way, I did. I have found spending time here the best way to calm my fears but also to face them head on if that makes sense. Friends and family may not want to face the possible worse but personally I want to know as much as possible and people are lovely here. I wish you all the best whatever your diagnosis turns out to be.