Hi all, just joined up today. I’ve received a very surprising diagnosis of MS after a short stay in hospital where I lost feeling in my leg and arm. I’ve had an MRI on the brain where they found lesions, had a lumber puncture and a further spinal MRI. I’ve been sent home for out patient appointments (Neurologist on 15th Nov) but wondering do I need to be contacting anyone as I’ve not got any medication and my leg is still as bad. Sorry for the loan but a little lost. Kind regards Susan
Hi Suzywood83, sorry you have had MS diagnosis and been in hospital. Im presuming they have discharged you as you have regained use of leg and arm? What treatment did you have in hospital? If you had 3-5 days of IV steroids given then that would be enough maybe without need for continual steroid tabs. When I was in hospital I had three days of IV steroids but didn’t come home with steroid tabs, except Gabapentin for nerve pain.
Did they give you info on MS nurse to contact? if not, have a look on your hospital’s website and see if an MS nurse number is available. If not, ring your consultant’s secretary and ask her for the number. If there isn’t a MS nurse then ask the secretary to ask the consultant if you need steroids. If you haven’t had any steroid treatment then I think its quite important that you know why they haven’t treated you with these. The MS Nurse can also help you with any questions you have after diagnosis.
I only have limited knowledge but I wish you all the best.
Kind regards
Julie
Hello Susan
It’s an unnerving thing, to get a diagnosis of MS very quickly. I still can work out if it’s better to get a fast diagnosis, or spend months going from test to test before eventually being diagnosed.
Whatever, welcome to the club we’d all prefer not to be entitled to join.
Steroids are used to reduce the inflammation which is causing the relapse. They aim to to shorten the relapse, not cure it.
The sooner you take steroids in a relapse, the better the result. So if your symptoms began 2 months ago (for eg), it probably wouldn’t be worth taking a dose of high dose steroids to help with remission. But if the relapse began last week, steroids might help.
The biggest problem with steroids is that they are unreliable. They might work, or they might not. Just because they worked last time, it doesn’t mean they’ll work this time. Another problem is they make you feel like crap. You get a vile taste in your mouth, have trouble sleeping and after the 3 or 5 day course, make you feel like you’ve been kicked all over.
Long term low dose steroids don’t help for MS as they might for other autoimmune diseases.
I would expect that you’d have the help available of an MS specialist nurse. If you’ve not been given the contact details, try phoning your neurologists secretary and ask him/her. They will be very helpful to explain the ins and outs of your new diagnosis. And truly, a good MS nurse is worth their weight in chocolate.
You can keep asking us for help, advice, or just moral support.
Sue
Thank you for your reply.I’ve not regained full use yet of my left side. Can walk a short distance before it goes weak and/or spasms. No treatment was given in hospital, just sent home and told to wait for my outpatient appointments. I’m worrying as it’s not getting much better and I’m due to work again and got so much going on with this. Kind regards Susan