Last reply 3 years ago
Recently diagnosed

Hi all

Just wanted to post to all the people on here newly diagnosed. I was diagnosed march this year after a really bad attack, I was in hospital for a month and was petrified thinking my life was over. I googled and unfortunately there are a lot of negative people who talk about ms. For me it taught me to be appreciative, I never really realised how lucky I was and I know people say it but there are a hell of a lot worse problems in the world, anyway With a lot of hard work. Learning to walk again (drs and physios told me I would never be in heels again) but I’m walking around in 6 inch heels again. Just stay positive and appreciate your body, don’t let it get you down. Just set yourself goals, I made a list and stuck to it, gives you a massive boost when you can tick things off, I started with daft things like getting to other side of room with out my stick, then built up each day, a few months on and I can walk miles in heels. I’m just trying to say that don’t look at negatives or dwell on the ms just see it as a way to challenge yourself and don’t forget nothing is impossible, stay positive xx

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stumbler
4 years ago

Hear, hear, @hannah015. 😀


bernie
4 years ago

Hi, just been diagnosed last month after having second relapse otic neuritis! Now I’m not on any medication yet but this last week my right arm fingers have pins needles numbness. Please can someone tell me? do I go to Drs or is this just part parcel that comes with MS?? Thank you X


hannah015
4 years ago

Hi @bernie

I would definitely contact drs or if you have an ms nurse just to be on safe side. Any new symptoms you should check. They can then advise if you need anything x


bernie
4 years ago

Many thanks, this is all new to
Me and it’s very scary. Just worried! but don’t want to be ringing my MS/Drs if it’s just what happens with MS. Thank you I will ring AM see if I can get App! Many thanks Xx


hannah015
4 years ago

@bernie

No problem, definitely best to call, they are there to support you. It is scary to start, I got diagnosed march this year. At first I was scared beyond belief but then you realise it’s not worth stressing about, just take each day as it comes. Try relaxing more, I found that deep breathing exercises when I got stressed helped. I found out an old friend from school has motto neurone disease, diagnosed at 30 and that put everything into prospective for me, it was turning point when I realised not to hate ms just to respect what my body has been through and is having to fight for me. A healthy diet, exercise little but often and positivity all helped me massively.
Hope it goes ok with dr
Keep smiling
Han x


cameron
4 years ago

Hi @bernie. Why are you not yet on treatment? I hope your neuro has explained the options and that you’ve read up about the available drugs. I say this, because judging from many of the posts here, there are a lot of neuros who are not up to speed with the latest developments and who drag their feet in getting people started on treatment. We know that the earlier you start, the more effect the drugs are likely to have… and we also know that untreated MS gets worse. So do chase them up if this is the case. xx


robb
4 years ago

your story is so similar to mine its unreal…except the walking in 6″ stiletto’s lol


bernie
4 years ago

Hi, I had my first otic neuritis 2010 my sight came back very quick and I didn’t have any other symptoms they where four years apart from each relapse Then on holiday Florida this year 2nd, so I guess that’s why I was not on any medication? was sent for lumper puncture which confirmed MS. Rang my MS nurse this morning and she has now told me I’ve taken another relapse due to pins/needles! So now it’s time for me to start Medication! she’s forwarding on to my Dr! I asked about my hand she said that they don’t give medication for it? as it will go few days. Monday I start but don’t know what it is yet! Thank you’s for helping out plus this is good to talk to others about it. I know it’s scary stuff them two letters MS but we have to get on with it


hannah015
4 years ago

Hi @robb

Lol I’m a high heel kind of a girl, unlike you lol

No way, did you end up paralysed one side too? Have you started treatment? I’m still waiting for Lemtrada treatment to start. Looking forward to when I finally get on it and can hopefully get back to work. Drs don’t seem as eager to get me back to work, never thought I would miss my job lol


hannah015
4 years ago

Good on you @bernie, positivity makes such a difference, use the ms as a reason to push you to do what you want in life don’t give up on any dreams.

Good you contacted nurse hopefully you will get treatment you want and can get on with it. The pins and needles for me are still there since March down left leg but now I just ignore it although I’m sure yours will go and I know a few people it just went in days but everyone’s different. You will be good in no time

Take care x


bernie
4 years ago

Yea just get on with it, I’ve four kids my eldest turning 21 Saturday, arranging party so no choice 🙂 now if? You don’t mind could you tell me, with this been a relapse is this always going to happen or just something that happens. I didn’t get to ask my nurse as my son came in while I was talking and I didn’t want to frighten him. I will understand if you can’t answer me but up till now I’ve stuck my head in sand not wanting to face or believe I have it! Thank you very much Xx


hannah015
4 years ago

Hi @bernie

To be honest it’s not an easy question to answer as everyone is different. It could be that you don’t ever suffer the same problems again or you could have it on and off. You are best contacting the nurse again when you can to ask but like I say even the professionals can’t answer a lot cause it’s all still quite unknown. They don’t really know how anyone’s path of ms will go. But medications are very advanced now with it and they should be able to give you advice on it all. Just try not to get stressed, eat healthily, exercise when you can, take vitamin d if your not already and just look after yourself the best you can.

Hope you feel better soon and get the advice you need from des and nurse

Hope your sons party goes well
Keep smiling
Han
X


bernie
4 years ago

I understand And yes I will put that question to my nurse, thanks for your help and I hope his party goes well also 😉 thanks Xx


hannah015
4 years ago

I would make a list of questions for nurse @bernie cause on phone it’s easy to forget things you wished you had asked.

Sure party will be brill
X


robb
3 years ago

hi Hannah sorry never got bk to you..im still in hospital its been a month now. wifi is patchy luv…im going to a rehabilitation centre. im improving slowly. 2 weeks ago couldn’t move.and yest I managed 10 steps with frame


hannah015
3 years ago

Hey @robb

Aww that’s not nice, I was in hospital for a month too in March this year. I, like you couldn’t walk it use my left arm. I don’t know about you but I found that the physio was too slow so I ended up doing my own, spent an hour In the morning stretching, then afternoon doing repetitive work with my left arm, daft things like reaching for a cup over and over. Then a few hours here and there lifting my leg wiggling my toes etc. Then once I got bit of movement back I started trying to balance (holding on to bed obviously) then I would try and walk a step on my own. After a while I built my walking up, first with a stick then gradually using it less and less. I just found that if I stuck to physio work I would still be lifting my arm 20 minutes a day. I found pushing myself worked 🙂 hope you get out soon 🙂

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