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New to all of this!

Hi I haven’t been diagnosed yet but had MRI and course of intravenous steroids ( horrible). I started having symptoms in early May. I had pins and needle like permanent feeling in feet, hands and legs and tightening belt around my waist and very tired. I’m a teacher so I worked through it looking forward to the holiday when I saw Neurologist had MRI on head and spine. Some symptoms have changed since the steroids my hands are still bad but my legs and feet are ok. I have pains in my left chest area all of the time difficult to pinpoint the exact area but today at work it was really bad especially when I took a deep breath… Is this to do with MS? I also get a shock like feeling down my spine and left leg when I bend my head. I’m really tired and getting grumpy…How long does an episode or relapse last. I still don’t feel any improvement! My Neurologist has told me he thinks it is some kind of MS … I’m worried in case it doesn’t get better. I have two children 13 and 10 and a husband who need looking after but I usually go to sleep after tea… Any words of wisdom would be appreciated…
Smurf

Hi,
I haven’t got any words of wisdom but I’m in similar circumstances so thought I’d say Hello.

My symptoms started in the Easter holiday, I had an emergency Neuro appointment and since then I’ve had brain and spine MRi and a lumbar puncture but no proper results yet and no treatment - I see him again at the end of the month.

I teach primary special needs and haven’t been in school since the beginning of May. I’m supposed to be doing a phased return hopefully after half term till Christmas but I’m not sure how I’ll manage. I have pins and needles in my feet all the time, strange muscle spasms in legs, arms, hands and shoulders and have trouble walking - I can only manage walking 10-15 minutes before I’m absolutely shattered. I use a stick all the time now and I’m just hoping I’ll be able to get some treatment at the end of the month.

This won’t have helped you at all - not quite sure why I answered! Is your walking effected - how do you manage in school if it is?
One thing I’ve learnt from reading posts is that everyone’s story is different but there’s loads of very knowledgable people who are extremely supportive and will offer ideas and advice.
Take Care,
S x

Fortunately my legs are ok! But I nearly went head over heels today my spacial awareness seems to have been affected i bump into things and have had a few falls. I’m Senco in school as well so life’s bad enough without ms. The head is being very kind at the moment but I don’t see how I can last in nursery reception it’s just too physical! I try not to show my fatigue at work. Good luck with getting back to work and thanks for taking the time to reply it took a lit for me to post I think I’m in denial!
Take Care

Hi, just wanted to welcome you to the forum, it’s a great place for information and support!

I don’t reply to many posts because I’m not very experienced myself (still in limbo after two years) but the fact you are the same age as me with two children exactly the same ages your post struck a chord.
Try not to worry too much, I know it’s difficult not to especially because you’ll be scared for yourself and concerned about how it will affect your family. Have you explained things to your kids? I was lucky if you can call it that because my Dad has MS so my girls could see that having MS needn’t mean that your ability to care for them will change, also my symptoms so far have not stopped me from doing things for them. My husband and I try to keep as light-hearted about it as possible around them and we have a laugh about my crap balance, the fact I can’t walk in a straight line, clumsiness and memory problems (they take advantage of that last one :lol: ). I haven’t lied to them, they know that things may get worse but you can’t worry about what might not happen, nobody knows what’s ahead, we just have a slight clue of what might go wrong.

You had a few questions and I’m not sure that I can answer them particularly well, but as far as I know a relapse is counted as anything more than 24 hours, on average lasts 1-2 months but can last for many months more (others might be able to correct me on this). This doesn’t help you much and I know that when you’re in the middle of it you can’t see the light at the end of the tunnel, but try to stay positive :slight_smile:
The pain in your side may be something referred to as the ‘MS hug’, I get it sometimes and for me it feels similar to the Braxten Hicks contractions I had when I was pregnant but others get different types of tightness around their chests/back/sides.
The buzzing sensation when you bend your neck is called L’Hermittes sign and it’s very common for people who have lesions in their spine. I have one lesion which is very high up and I’ve had this symptom since before I had my first episode I just didn’t realise it was a symptom. For me it goes all the way down my body right to my fingertips and toes, I’m kind of used it now and I’ve accepted that for me it’s probably not going to go away.
I’m not on any medications at the moment but I know that there are various drugs available to help with the different symptoms so maybe you could discuss this with your GP or MS nurse if you have one (I’ve got an MS nurse even though I’m still in limbo, I don’t think everyone gets this so I know I’m lucky).

Lastly, give into the tiredness, it’s a symptom and you need to rest as much as you can!

I don’t know if any of this has helped, I’m never sure if I say the right thing, but look after yourself!

Lynn
x

Minnie24 wrote:
I don't reply to many posts because I'm not very experienced myself

Very quick one - please do more replies Lynn! Good job! :smiley:

Karen x

Hiya Smurf, and welcome to the site :slight_smile:

Lynn’s done a sterling job answering your questions. I just wanted to add one extra thing:

Hang in there! Unfortunately, relapses can last months, but the steroids will still be working away so with any luck you’ll start to notice an improvement very soon.

Karen x

Thank you Lynn for some very good advice.I have told the kids as much as I can and like you I get ribbed about my balance. It’s a bugger but I guess I’ve just got to get on with it. Thanks again for taking the time to reply it made me feel better!
Susan x

Ohh Forgot to add I haven’t been offered an MS nurse but I will ask!
Thanks again

Glad it helped Susan! Sometimes just writing everything down helps so you probably felt a bit better just by doing your original post :slight_smile:

Do ask about an MS nurse, I think it can be a hit or a miss what help they offer but mine was very helpful, particularly initially because she could take more time than the neuro to listen to my concerns and explain things further.

Karen - thanks for the vote of confidence :smiley:

Take care
Lynn
x

i personaly am still suffering symtams from my first relapse wich was january of this year. But they are getting better slowly i might add but better non the less.
But from what my neuro says relapse symtoms can take as long as two years to dissapere all together and if they havnt in that time the chances are they never will. But how true that is i dont know

Just seen neurologist today he’s told me to go on the sick as he thought my symptoms would have improved with the steroids and he is disappointed ( not as much as me) He couldn’t explain my chest pain though! I’m having MRI again in three weeks time he said that should confirm diagnosis and see how progressive it is!! It’s all very scary especially trying to explain it to other people!

Smurf1970 wrote:
Just seen neurologist today he's told me to go on the sick as he thought my symptoms would have improved with the steroids and he is disappointed ( not as much as me) He couldn't explain my chest pain though! I'm having MRI again in three weeks time he said that should confirm diagnosis and see how progressive it is!! It's all very scary especially trying to explain it to other people!

Are you sure he said “progressive” and not “active”? I’m asking because it’s not possible to tell how progressive someone’s MS is from MRI. If, however, you’ve got new lesions, then your MS is active, possibly highly active.

Don’t be too worried about the steroids not working - they don’t work for everyone, including me :frowning:

Is your chest pain the MS hug? And, if it is, bit worrying that the neuro didn’t know about it!

Karen x

Probably didn’t say progressive can’t remember if he said active either now. I can’t tell if it’s the ms hug everyone seems to describe it differently. The pain is there all the time but gets worse at different times when it’s at it’s worse it’s like a pain right in my heart and I can’t take deep breaths it hearts at the front back and inside if that makes any sense? I feel like I’m becoming neurotic now!