What do I do now???

Hi, so I finished my 5 day course of steroids, I’m a lot better than I was but I feel like a prisoner I can’t go far at all outside the house before I become very weak, start with the shakes and feel like my legs are going to go from under me. I received a letter today from my neurologist to say that my csf came back clear and he will see me in clinic to review me on the 29th June, I am a single mother of 2 I am an able to get my daughter to nursery myself and I’m replying on friends to get my shopping, can’t take my son to playgroup, tried to go to tescos today and got round 3 isles and the shakes started, legs going weak etc, what am I supposed to do go on like this until my next app? Im not my normal self anymore, have no conversation in me feel completely at rock bottom.

Hi, try ringing the neuros secretary to see if you can get an earlier appointment, you could be lucky. Do you have an MS nurse? If so, ring her too.

I know the waiting is horrible for you but try to rely on others who can help to get you through this bad time…I’m sure you’d help someone if needed, most people are only too pleased to help, just until you’re feeling a bit better.

Good luck

Rosina x

I haven’t been given an MS nurse as I haven’t been diagnosed with anything . and the last time I phoned the neuros secretary she was quite rude to me telling me that I shouldn’t contact her it should be the gp, so should I go to my gp? I just feel like I’m being left and every day is a struggle feel like I’m putting on everyone and letting my kiddies down by being useless :frowning: x

Hi there

have you had an mri? I’d go to your go/phone them

and ask them advice . I’ve had rudeness down the phone also , not nice when you are suffering

Kat x

First of all you need to get your head around the fact that you are not letting your kids down and putting people out. You are not out partying all night you are ill and doing the best you can. This is a really stressful time waiting for your diagnosis, have you got a good support system? If so use it, that’s what family and friends are for.

i totally understand trying to shop and the feeling of your legs going it is really scary. I do most of my shopping on tesco online. It is all about conserving energy. Do the minimum housework, double up when you are cooking and freeze half for another day. Save you energy for your children, it will get easier the waiting is the worst. When you know what exactly you are dealing with it gets easier. If you get an Ms diagnosis you will have access to an ms nurse and the can offer great advice.

take care of yourself,

Ann x

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Hi, im sorry I have no advice but to say I think you are doing an amazing job, really, I know how you are feeling as i finished my steroid drip last sunday and had to sleep for about 5 days solid (in the day as couldn’t at night) and had to rely massively on people around me as couldn’t even bathe/change the nappy of my son. My friend told me if you contact the council they can help you as are entiteled to disability allowance/ help… there is also a site with info for support to disabled parents which may be of interest…

Sending you hugs


Hi guys thank you so much for replying, yes ive had an MRI which shows 3 lesions on my brain and 1 on my spine, I’m going to do my shopping online from now on so that will be one less thing to stress about, as for the disability allowance surely I wouldn’t be entitled to that without a diagnosis? Also I really hate to say this but earlier when I was getting changed for a bath I realised I had wee’d a little and not even noticed is that normal? I’m only 31!!! X

Hi Gemma

​bladder probs are common in Ms . I have bladder problems on and off and find stress makes it worse . I’d rule out and infection and then if it is likely Ms related you can see a continence nurse . I’ve never seen one , but heard they are helpful . In the mean time if you are worried I’d avoid bladder irritants such as caffeine /alcohol . Also get some continence pads ? I think you can get ones for little accidents or larger ones if that makes sense ?

kat x

Gemma you can’t continue on your own without help. If you don’t know anything about PIP (personel independence payment) I suggest you make an appointment with your local Citizens Advice they will be able to advise on this and any other benefits. They will also fill forms in for you. They will also be able to advise on the things your local council may be able to help with.

Stay strong honey things will get easier for you.

Jan x

The most important order of things here is:-

  • Relax! - you need to let your body recover and stress/worrying really do play havoc with your MS System
  • Recover - Eat, Sleep and do the necessary things you have to do and let your system reset, it takes a while after a relapse
  • Persist - Try not to read too much into Google, clear CSF does not necessarily mean anything, Neuro’s work on MRI’s, Blood Tests and LP’s, he will review you and ensure that you are keeping a good record, so that you can challenge what you are not happy with.

Get well soon, be kind to yourself.

Thank you for all your replies, janhhh I have read the guidance notes and without a diagnosis I don’t think I would be entitled to pip, I phoned my neurologists secretary yesterday to see if I could get my app brought forward which I can’t I also asked if I could leave a message for him, she was very rude telling me no as he’s away for 2 weeks and go see my gp and if they think it’s relevant they will send me back. But I’m not sure I should, reading people’s replys I’m taking it that all this is to be expected and I just need to wait for it to pass? Also there wouldn’t be much the neuro will do anyway will there, I may be wrong but in my understanding I wouldn’t be given steroids as I’ve already had them and I can’t be given needs for Ms without a diagnosis?. My best friend opened up last night and asked if I would see the doctor as she’s worried I’m getting depressed and she said I’m not the Gemma she knows anymore (we have been friends for 20 years) so she knows me better than I do! But I’m already on a high dose of anti depressants been on them for a few years… Oh I’m fed up with it all! X

It sometimes takes over your life prediagnosis, stay strong and keep talking to your friend it’s good to have someone to sound off to now and again.

Best wishes

Jan x

Ive seen my gp today who had put me back on steroids for 7 days and is also referring me back to neurology so hopefully I will be seen before the end of June x

Hi Gemma

could you ask for some counselling for this ? It is worth having someone to talk to . Hope you feel better soon x

That wasn’t mentioned, I’m actually feeling quite positve today im just focusing on the steroids helping to give me my legs back so I can start to get back to being me x

Hi well ther steroids made me feel fantastic on day one! It was like life before this mess I went out shopping cleaned the whole house, played with the kids I felt amazing…since then every day has got a little worse, last day tomorrow and I’m back to weak legs, tremors in my hands and arms :frowning: havent heard anything yet from neurology so I’m guessing my app isn’t being brought forward, what should I do now go back to my gp? Does anyone have an idea how long this might last? It’s currently been over 9 weeks since the start of this… It’s driving me insane!!! X

I’ve read the other posts here. I’ve had MS for over 20 years but there is no easy answer to your question. MS affects everyone differently. Sometimes your symptoms will last for a long time and other times they go away quickly. The most important thing is to keep as calm and positive as possible. Stress definitely aggravates the symptoms and delays the recovery. Get as much help as you can. Perhaps listen to some relaxing music or something else you enjoy doing. You wil get better! Don’t think of this as a condition that is the end of the world. There is life after MS. I still hold down a full time job so it can be done! You just have to learn to adapt and do things differently.

The other posts on Personal independence Payment are incorrect. You do not have to have a diagnosis to apply for PIPS you just have to have a “Physical or mental problem” which affects your ability to carry out daily tasks of affects your mobility. You have to have had the problems for at least 3 months before you can claim and the affects likely to last form more than 9 months.

Get the form. By the time you fill in the form and attend the medical you will probably have the diagnosis. Don’t try to fill it in yourself. Definitely get help from a welfare rights officer at you local council or CAB.