MS attacks

New diagnosis and before diagnosis
1

Hi all,

I recently joined this forum after an internet search for my symptoms led me here.

I am still new here and am awaiting a neuro appointment (next week) and MRI (18th May). I have had a few weeks, so far, of pretty scary and disabling ‘MS-like’ symptoms. The CT scan and bloods I had 5 weeks ago were all clear. This is week 5 of my ‘episode’ and am recovering slowly. No longer need a stick to walk or a patch over one eye etc. Much stronger now and able to cook, clean and shop again.

What I wanted to ask was:

On a scale of 1-10, with 1 being the mildest of 'attack with mild symptoms and 10 being a severe attack with severe symptoms, how mild would a mild attack be and how severe would a severe attack be?

I ask because what happened to me a few weeks ago was terrifying and seemingly ‘out-of-the-blue’.

I woke up one morning numb all down my left side with a pins ‘n’ needles feeling. Double vision in right eye, feeling sick and dizzy and weak, could not use my left limbs properly or use my hand. At the worst point, about two weeks in, I lost the use of my left leg completely for about 12 hours then was able to use it again next morning but struggled. I could not cook or clean or shop. I am on my own with two kids, one with ADHD. I have Tourettes syndrome myself. I have no friends or family nearby. I am terrified of this happening again and also scared at how much worse it can get. I didn’t wash for 3 days when it was at it’s worst because I could not stand in the shower or pull myself out of the bath. My hand and foot and eye are the worst effected and and seem to be taking the longest to recover.

There’s no dout about it, limboland is not a nice place to dwell.

What is bothering me most is that I have two kids who are dependant on me, they are not toddlers but they still need me and I don’t have anyone who can look after me or the kds should this happen again.

I have no support. My kids were scared when this was happening to me (as I was), especially when I just seemed to get worse and worse as each day passed. When my leg gave way completley my eldest asked if he should call an ambulance. I said no and that I would be fine after a rest because I didn’t want him to be worried but in my mind I was scared and alone.

The fatigue, weakness and lack of strength/energy was awful. I would wake up each morning feeling like I had just climbed a mountain and every muslce was drained.

I do not like this at all.

2

I am new on here too, I just joined today so cannot really give you the advice you seek.

I just had to respond to your post, as I too had an attack similar to the one you have just had when I was 20 yrs old, Im 39 now and never experienced anything like that since, thank god! I have suffered occasional problems on and off for the last 19yrs and recently saw a consultant who says its very likely I have MS, the stroke I thouught I had 20yrs ago may not have been a stroke but MS? It took me 6 weeks to recover back then and I did completely recover and went on to have 3 children too. I do hope this gives you some inspiration and I hope you recover quickly and fully. Im just about to have a further MRI scan, lumber puncture and more bloods done to let me know whats wrong with me. My last MRI didnt look good and the white patch on my brain is very large and extensive? I know its all very scarey but the people on here seem to be really helpful and supportive. Good luck to you!

Chelle x

3

Hi Chelle and thanks very much for your reply.

I am 40 and have never experienced anything like this before. When I first went to my doc he sent me straight to AAU for a CT scan. I think he thought it was a stroke or brain tumour? Thankfully it is neither of those …but still all very mysterious.

I hate the fact that I have no support should I get another attack or if this one doesn’t every go away completely.

I am really missing the normality of my life.

I don’t know the length or severity of an ‘average’ attack …or if there is any such thing even.

4

Hi Midnightmoon x I don’t know much but there is one thing I have learnt and that is there is nothing ‘average’ about anything to do with neurology! x

I’m so glad you say you are feeling stronger as it must be so didtressing for you with children to care for x xxx

I have no idea about the support system available for mums in your position - perhaps you will get some advice if you post on the Everyday Living section? What about your GP? Could you discuss things with him/her? It’s not good that you are going through all this on your own xxxxjenxxxxx

5

As your child has ADHD is there some kind of support network in place for him/her ? Maybe they could give you advise.

As ms is so variable in its nature and stress will definately make things worse I think you need a back up plan in place for worse case scenario so you have got peace of mind.

I dont know if you have to take the kids to school but I have seen old posts on here that following a chat with the school there are various schemes available for people who struggle with mobility to ensure the kids get to schhol safely. It may be worth telling them anyway so they can spot any signs of them struggling with whats happening but not wanting to worry you.

I think its a good idea to book a double appt with your gp so you can start to get medication on board to help with symptoms and a support network in place to help you manage during bad times. A visit from OT would be useful to help with aids to daily living…you may not need them all the time but if they are in your toolbox so to speak,when you are in difficulty you can use them so as not to use up valuable energy struggling with things.

I have to say your eldest will be worrying anyway,they know when moms not right however young they are.The society do books for going through telling youngsters about ms it might be worth having a look at those. If he/she was old enough to want to call an ambulance if he/she knows more about your condition it might help them feel more in control when your not at your best.

I will shut up now and wish you all the best. Dont forget here is an excellent place to be when you feel alone as there are alot of us out there.

Pip

6

Hi midnightmoon. I’m new as well and, like you, am stuck in limbo land My oldest son also has ADHD so I know how hard it is just dealing with that alone so with everything else on top its a real struggle.

Have you been in touch with cahms at all? How old is your child?

If you need to talk about any of it just give me a shout.

Hugs to you xx

7

Thanks Kizzydane.

Ha, you’re right about nothing normal about neurology as Tourette’s is aso a neurological condition and that is such a bizzarre condition!

I think once I have had my appointment with the neuro I will go back to my GP and go from there. Haven’t a clue what will actually be involved in this neuro appointment. I don’t have a neurologist. When the docs at AAU asked me who manages my Tourette’s I said no one does. He looked at me a bit strange. I just tend to carry on regardless really and don’t complain a lot about anythng…usually…until this!

I can usually manage OK but when something like this happens, to your physical health, you realise just how alone you really are.

8

Hi Pip.

Thanks for your reply.

No, my son doesn’t have anything in place fcor his ADHD really. We just muddle through. He is on meds though which help enormously.

Yes, I think I definitely need a back-up plan put in place now this has happened. What worries me is that this is the first time it’s happened and I don’t know if I would qualify for help?

Lucklily the schools are within walking distance and as I don’t drive so it is really a godsend.

My boys are 12 and 14 and I think I do overprotect them a lot, which is something that mums just do anyway, and I don’t always remember that they are growing up fast and not quite so ‘little’ any more. I don’t want to mention MS or anything like that right now in case it’s not that. I would feel like I am worrying them unnecessarily. It’s so hard to know what to do! I think once I’ve had the neuro appointment I will decide what to do from there. If I get any answers there that is.

9

Hi Nikkinakkinoo.

My son was under CAMHS last year and they were actually brilliant! (we had absolute rubbish CAMHS service in other counties we have lived in). They helped him with his OCD by means of CBT and also started him on meds for the first time ever and it has made the world of difference. The meds do wear off and we do see the ADHD side of him come back but the meds have made an amazing diffdrence for him at school. Typical the teachers get the best of him while the emds are working eh? hehe. He is such a sweetie though, so thoughtful and helpful.

We don’t go to CAMHS now as they really did all they could for him last year. If we run into more problems we can go back at any time though.

Thank you for your reply :slight_smile:

10

Hi Sunshine1975.

An 18 month old daughter, yes I can imagine what struggles that brings on it’s own without haivng MS thrown into the mix!

I hope you get some practical support and help?

The thing with DLA ( I get it for my son on lower rate, care only) is that the illness/disability needs to be an on-going condition and I don’t know if this will be? I think I remember the form saying it has to be 6 months at least? I might be wrong or it may have changed now. I know what a struggle it is to get DLA at the best of times, even when your son is medicated to the eyeballs and has a firm DX from St.George’s hospital in London.

I don’t think I would stand a hope in hell’s chance of getting DLA myself to be honest, and rightly so I think, as this has only been 5 weeks and is getting better slowly…