Last reply 1 year ago
Advice. Help

Hi I only got diagnosed 2 weeks ago. I got diagnosed while in hospital and they just told me I had relapse and remission and sent me on my way and told me ill be seen in outpatients the waiting time is up to 10 weeks. I’m really confused and scared I don’t understand what’s happening what I’m supposed to do in this time. I went to hospital because my right leg has gone numb and I can’t feel sharp soft or hot and cold not anything. my left leg got very weak. I couldn’t walk or dress myself. They gave me 5 days of steriods when I left the hospital. That helped a lot with my left leg and done nothing with my right. Sence then iv had a lot of pain in my back. Also tightness in my tummy And ribs. I keep trying to see a doctor they just gave me codine and told me to wait for my appointment with neurology. 🤢😭😦

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vickya
1 year ago

Hi
I am very sorry to hear of your diagnosis – it must be scary, but rest assured you are definitely not alone. There are many other people on this journey with you. I’ve had this for 27 years now and I can still hold it together with the best of them.
All I would advise for now is rest and allow your body to heal itself with the help you already have and read everything you can about this. You are about to become your best expert in your condition, so don’t confine yourself to conventional medical information – learn, research and take control. Then when you do get to your appointment you will be armed with a list of questions and ready to do everything you can, with or without a consultant, to help yourself going forward
best wishes
Vicky


honeysuckle
1 year ago

Hiya

I’m so sorry to hear the sadness and confusion in your voice. Sadly this is the scenario for most people diagnosed with MS (and I’m sure it is similar for other chronic illness), so I can appreciate how you feel. Vicky has given you wise words so there isn’t a great deal I can add. I’ve been diagnosed just over 3 and 1/2 years and am still very much on a journey of self discovery and learning every day what is and isn’t best for my overall health and wellbeing…it’s a journey my lovely and you have to do what’s right for you, not what others tell you to do! That said, I promise you it gets easier Hun. You just have to not fight it and as Vicky said, listen to your body, as frustrating as that sometimes is, as it knows what’s best. Research is good but so is taking your time. Don’t overwhelm yourself with info, don’t put pressure on yourself to have all the answers and don’t be afraid to reach out. You may not get the answers or support you need from the hospital etc but you will always get a reply on here, on social media support groups and from true friends. I find the ms helpline is good if you need a cry or impartial ear and I will always try and answer if you ever want to DM me. Be kind to yourself Hun. I find Bach flowers help me, perhaps google them and see which resonate if you want something to get a handle on your emotions/feelings/shock…if you need any guidance or a rant just shout. Hopefully the shift ms buddy service will start soon so you can have a point of direct support. Take care flower x


doubleo7hud
1 year ago

Ey up Sam iv just been diagnosed on Wednesday was given steroids as having similar symptoms before Christmas. just plod on through it steroids take about 6 – 8 weeks to kick in properly. If your legs feel tired just rest for 5 or ten mins and don’t spend too much time on the shitter on your phone it’s a reet bastard when you try get back up again. Don’t try over do it just take it as easy as possible but keep going. Need anymore tips then just send me a message be happy to waffle a load of bollocks.


samlex11
1 year ago

Thank you everyone for your messages. To the last message they only gave me 5 days of steriods and then nothing. I spend most my time in bed resting as I can’t really walk. I live in a second floor flat with no lift so I’m a bit trapped at the moment iv made it to the shops a couple of times but my back has been killing me I’m not sure if it’s a new attack or it’s cos how I’m walking. Another thing it might be is when I had my spinal tap thing they attempted 8 times the first day and 5 the second. I don’t know but I’m taking codine that don’t really work and laying down a lot x


doubleo7hud
1 year ago

I had just 5 days steroids too they make all the difference they got me on my feet again they take 6-8 weeks to start working properly but you may feel like better sooner. Pain wise you should request gabapentin from your doctors it’s for nerve pain works a treat. Or is the codine for where you had lumber puncture? If your in discomfort then get a emergency appointment at your GP. Get out and about as much as possible but take it steady. Use it or loose it as iv been told by a couple of people with ms iv been lucky enough to meet. Get hold of your local council and get occupational health involved they will get things installed at home for you so you can get around better they also may move you to more suitable accomadation.


stumbler
1 year ago

@samlex11 , it is unforgivable that you have been diagnosed with a potential life-changing condition during a hospital stay, given five days of steroids and sent home on the basis that “we’ll be in touch” at some stage!

@doubleo7hud is quite correct, steroids aren’t a quick fix. They help your body recover over a 6 – 8 week period. But, you need to rest up, to allow this recovery to happen.

That spinal tap sounded horrendous. Was there a reason for so many attempts? I had a spinal tap back in the ’80s, which caused me some grief. It was because I had a “pronounced bone structure”. It left me feeling like I had had a kick in the back!

Anyway, you need someone to talk to regarding your diagnosis. At the bare minimum, you should have been put in contact with your local MS Nurse. A specialist nurse that only deals with MS patients.

Now, being located around Brighton also, I can find the contact details for your local MS Nurse, dependant on whether you are in East or West Sussex.

MS can be life-changing, although now it is becoming a much more manageable condition. You’re very young, so there’s no reason why you shouldn’t make a good recovery from this.

Being presently housebound, or is that flatbound, we can help with any questions that you may have. So, feel free to bombard us.


doubleo7hud
1 year ago

@stumbler is also spot on as ever, your in the right place Sam shift ms and all the people in here have helped me no end. Just ask we’re all ont same boyt (thats Yorkshire for boat, also means shoe tho depends how tha ses it) and happy to help. 👍 peace aht


tryer8
1 year ago

Wow what a “challenging” experience and I echo the comments that you should have been treated with more care.

Yes contact the MS group in the UK (for immediate and physical advise) and get on these boards and see if that helps with the psychi side of things.

I’ve tried LDN (experimental, cheap and became ineffective). Copaxone – fine until they changed the formula and then whatever the base of the drug became (mushroom based I read somewhere) just caused me hives and I had to stop after about 1 year taking that. Others are on this for years and you have to inject yourself – I found that was ok just one place I could not do it as it hurt to much).

Now on Tysabari (infusion every month) and I believe there is a new twice per year medication shortly to be in Australia . I also take Fampyra (supposed to help with walking) however it seems to be less effective now after 12 or so months.

Be kind yo yourself, if you need to rest then do so, this is a “chronic” disease and as such you need to listen to how your body reacts. Hope you are feeling a bit better by the time you read this.

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