not yet been disgnosed and struggling to cope

New diagnosis and before diagnosis
1

Hi, I am 34 years old and have four children - 2 of which are only 2 and 3 years old. I am curretnly off work sick due to symptoms such as heavy achy legs, blurred vision, dizzienss and vertigo, extreme faitigue (I mean ridiculous tiredness that comes on and almost paralyses me) feeling of numbness in the right side of my body and also in parts of my body its like someone repeatedly scraping my skin so that its over sensitive - it feels like its crawling :frowning: i have pins n needles all the time in places feet elbows hands legs i feel confused and like i am unable to speak the words that I am thinking at times - i feel that there is a line down the middle of my body like the right side is not mine and im dragging it around

I have had a CT Scan which was clear - i am waiting on an MRI (feb 21st) i have had a neuro exam and was told that there was defintite things pointing towards neuro thinking its MS but they will not treat me or diagnose me without the MRI.

i feel totally alone and terrified - i can no longer be the kind of mum or partner that i was or want to be. everything is uncertain and i am fed up fighting through each day -

sorry for the rambling i just desperately want to know if anyone has been in this situauiton or got treatment before a diagnosis

and if the MRI is clear does thatmean i wont be diagnosed? is there financial help available before a diagnosis?

thanks in advance

Jx

2

Hi J

My heart goes out to you. I can sympathize with you, my symptoms are very (in fact eerily) similar. I’ve also been told it’s probably MS, just waiting for neuro to diagnose. I can only advise you to accept help offers from friends and family. Make time for yourself and rest. I found that lying down with an audio book helps me relax and then I feel better and able to cope again.

You are not alone as this forum should prove. Try to claim DLA . If you have a union, get their help too. I’m sorry I can’t help with other questions but keep your chin up. Speak to your partner, he may be unsure how to approach you about it all.

Good luck

Min x

3

Hi

thank you so much for replying - i feel like im going out of my mind - if only i could lie down - i have to take my kids out of nursery as i cant afford to keep them in as im now on SSP

have you been able to claim DLA without a diagnosis?

x

4

Hi

thank you so much for replying - i feel like im going out of my mind - if only i could lie down - i have to take my kids out of nursery as i cant afford to keep them in as im now on SSP

have you been able to claim DLA without a diagnosis?

x

5

CAB tell me that whilst on SSP, you can also claim contribution based ESA. I’m going to try next week…it’s worth a try. Xx

6

it defo is

have you been diagnosed x

7

Hi again

Yes, you can claim DLA with your symptoms before diagnosis. I get it as I am physically unable to manage. I’m a single parent too and have finally accepted babysitting from my parents and it has really helped. I’ve been off sick for 18 months now and finances take time to claim but get advice and claim as early as you can. MAKE time to rest or Things will get on top of you. It’s hard but it makes all the difference, believe me.

Good luck

Min x

8

Yes, I was diagnosed in late September but have been off work sick since August. But I think the claim is based on the symptoms and issues around them that make you unable to work, rather than an official diagnosis. Xx

9

Sorry, Mrs H is right. It depends on symptoms, not diagnosis. Read up on internet , they explain.

10

thank you

x

11

Hi J, and welcome to the site :slight_smile:

To be diagnosed with MS, the patient has to have had at least two attacks as well as at least two affected areas of the central nervous system. You haven’t said if you’ve ever had a previous attack. If you haven’t, then there is a good chance that you do not and will never have MS. This is because there are various conditions that strike only once and that are very very similar to MS and, for some unknown reason, about 50% of people who have a first “MS” attack, never have another one.

Unfortunately, even one-off attacks can take a long time to improve :frowning: Resting as much as possible, eating healthily, taking lots of “me” time and ruthlessly prioritising what you spend any energy on can help. I appreciate that it is very hard to take it easy when you have a young family, but this is not a good time to try to be supermum - stock up on DVDs (borrow them rather than buy them), let the kids watch the telly as much as necessary, ask friends to arrange lots of play dates (and get them to do the pick ups and drop offs), ignore the housework (dust is for drawing in!), resort to ready meals, etc. You need to give your body as much in the way of resources as possible - don’t waste any elsewhere unless it is really necessary.

If your partner doesn’t like the mess / dirt / whatever - point him/her in the direction of the hoover! And then TALK - they need to understand and you shouldn’t have to do this on your own.

The other thing I suggest is asking for help with your symptoms, e.g. neurophysio for the vertigo (they can show you exercises that can help loads) and neuropathic painkillers for the sensory symptoms. If your GP won’t help, then call your neuro’s secretary and ask for advice - which you can then go and tell your GP!

DLA is available without diagnosis, as the others have said, however the application form is a nightmare. If you can afford it, joining the benefitsandwork website gives you access to the inside information which can make a big difference to success rates. If you can’t (it’s about £20), then the CAB should be able to help you fill it in.

One final thing… if it does turn out to be MS, please believe me that it really isn’t the end of the world. Life can still be good. Promise.

Karen x

12

thank you so much for your reply

this is maybe my 5th time and its worse each time - its been happening for nearly two years and at first was achy legs and occasionsal numbness and pins n needles they thought it was joint pain and i saw a rheamotoid speciailist who referred me to neuro as by time they ruled out lymes disease and lupus and b12 deficiency among many other things, my symptoms had changed dramatically to include all the ones listed in my previous post as well as the feeling like someone is squeezing me, i cant bear to wear a bra any longer than nec, these things dont all happen at once though. the killer thing is the eyesight that really terrifies me

i feel trapped in a body i dont want and i am devastated that my kids now have a sick mum - i want my life back - this is to scary

and i feel like im getting no help

x

13

thank you so much for your reply

this is maybe my 5th time and its worse each time - its been happening for nearly two years and at first was achy legs and occasionsal numbness and pins n needles they thought it was joint pain and i saw a rheamotoid speciailist who referred me to neuro as by time they ruled out lymes disease and lupus and b12 deficiency among many other things, my symptoms had changed dramatically to include all the ones listed in my previous post as well as the feeling like someone is squeezing me, i cant bear to wear a bra any longer than nec, these things dont all happen at once though. the killer thing is the eyesight that really terrifies me

i feel trapped in a body i dont want and i am devastated that my kids now have a sick mum - i want my life back - this is to scary

and i feel like im getting no help

x

14

The best way to get help is to ask for it. I know this sounds a bit daft, but it’s true - it’s the people who ask, who get. Nothing gets offered these days :frowning:

So, please make an appointment with your GP and ask about urgent neurophysio and meds - getting the right therapy and meds can make the world of difference. Also ask for a referral to ophthalmology to find out what’s causing your blurred vision - they might be able to help.

Kx

15

please check your private messages, I’ve sent you info about benefits.

Thanks.

16

Hi,

I had a really bad attack last year. I had 15 symptoms at one point. B12 really helped me, start with 100mcg a day. Most of my symptoms went after a week and I had really bad ms hug. Give it a go it might help you.

Thanks,

Adrian

17

I have recently been diognised with MS (September 2012)
In the months leading upto the MRI and Neurologist and a few months after finding out I was a bloody mess. My head was all over the place and I felt like I was failing at everything. My kids were suffering (I have 2 still living at home) and so was my marriage.
About 6 weeks ago I started taking antidepressants and it has made a massive difference.
I dont think I was “Depressed” but I was most certanly “Scatter Brained”
My problems are still there (Weekness, Fatigue, Vision issues, and others) but the pills give me “Clarity” and help me function again. Both my children and my Husband have noticed the difference.

Hope this helps you :slight_smile:

18

[quote=Angie Russel]

I have recently been diognised with MS (September 2012)
In the months leading upto the MRI and Neurologist and a few months after finding out I was a bloody mess. My head was all over the place and I felt like I was failing at everything. My kids were suffering (I have 2 still living at home) and so was my marriage.
About 6 weeks ago I started taking antidepressants and it has made a massive difference.
I dont think I was “Depressed” but I was most certanly “Scatter Brained”
My problems are still there (Weekness, Fatigue, Vision issues, and others) but the pills give me “Clarity” and help me function again. Both my children and my Husband have noticed the difference.

Hope this helps you :slight_smile:

maria julie.

Hi im in the same position as you have exactly the same symptoms and being fobbed off by doctors my mri was clear and im waiting for a lumber puncture, i saw a nuerologist who fobbed me off and said it was all in my mind and referred me to a phyciatrist so im paying to see a doctor next week who specialises in MS

19

Hi there. I have the same symptoms. Seen a neurologist a few times since June and he just fobs me off. My MRI showed a lesion in my brain but he told me it’s “nothing to worry about” and diagnosed me with myoclonus. This only explains the jerks I get, not the pain, numbness, tingling etc. So sick of being fobbed off when the MRI shows something! He told me I can’t be diagnosed cos I haven’t had an attack for 24 hours. But now my left leg has been numb for a week, losing stability, pains in leg etc. Does that sound like a MS attack? My dad has MS too and it’s like deja vu for my family.

20

Hi All, am so sorry to hear about all these symptoms, i’ m in your exact situation TE1428. Was hit with every single possible weird feeling but on my left side including my lady bits…not good. Worst bit like many, after MRIS’s, LP and SSEP I am still being told everything is fine. Unbelievable. See how these symptoms can mimic MS but since December 2012 i have not felt myself. All over the place, balance is off the radar…x wish you all the best x