Hiya, I was diagnosed with relapsing-remitting MS just before the Covid-19 crisis kicked off, although it seems probable that I’d already had it for a few years and had put early symptoms down to other things and not sought any medical advice. Early Feb seems to have been my first big relapse. I had problems with my speech and worsening of bladder issues which had been already going on for a while. And I’ve also been having a lot of difficulty walking. I had a course of steroids treatment and it does seem to have helped a lot. My fatigue and general pain levels are better and my speech issues have completely cleared up. But I am still having trouble walking and am generally struggling quite a lot to get around “efficiently”. I would say the problems with walking are coming from 3 things, although I could be wrong as I’m obviously not a medical professional!! 1. Fatigue and pains: I just get tired very quickly when I’m walking and I have to stop and sit down a lot. 2. Balancing: my balance has been really off, although it has improved a little with the exercises I’ve been doing. 3. Losing feeling/ability to coordinate: so, sometimes I get pins-and-needles or my leg will just go completely numb. And sometimes I just can’t seem to coordinate my legs to do what I want: it’s not exactly just lack of sensation, it is as if my legs won’t do what my brain is telling them to! I haven’t seen Physio yet because of Covid-19, but I have had contact and they have given me exercises to do. I’ve been doing them religiously, but I don’t yet see a lot of improvement! Does anyone have any suggestions, from experience, about what might help? I am struggling to do things with my young children and I’m just generally lacking confidence about going out because I worry that I’ll get suddenly tired or have a fall (I have had a lot of falls!). Thank you in advance 
Anyone? Sorry to be needy and annoying! 
Hello Jessa
You’re neither needy nor annoying. You’ve asked perfectly reasonable questions and you’d expect someone to reply. Sorry that you’ve been ignored thus far.
What a shocking time to be diagnosed. Very unfortunate timing! So you’re likely to be waiting some while for one-on one physio help. Have you been given the phone number of an MS nurse? Had any contact from an MS nurse? Have you been offered any disease modifying drugs as yet? Is your neurologist helping you to get community help? If the answer to any/all of these questions is no, maybe you could ask his/her secretary for help in accessing some assistance?
In terms of your on going mobility problems following the relapse which gave rise to your diagnosis, you’ll find that relapses can take what seems like forever for remission to make things better. But very gradually you are likely to get more remission. Steroids can be like nasty drugs but which are like miracle workers. But they can also be nasty drugs that do s*d all for the relapse. Or nasty drugs that take a long time to have any effect on your symptoms from the relapse. This is the biggest problem with steroids: their unreliability.
All I can say really is that you need to have some faith in your own body. Continue with the physio exercises you’ve been given. Consider a walking aid if you think one might help with balance, fatigue, coordination and/or safety. I’m thinking about a crutch rather than a stick (easier to hang onto, less likely to drop a crutch, more stability, etc - certainly from my own experience). You can get some much more attractive crutches now than the lightweight, grey NHS type, just search the internet for example using cool+crutches. You’ll come up with a lot of different companies selling different coloured ergonomic crutches. The prices vary massively, so shop around.
Keep asking questions on here! If you get no replies just nudge us and someone will reply!
Best of luck.
Sue
Get a Rollator. Don’t waste time and money on crutches. It will boost your confidence and most Rollators have a seat when needed. I know, because I have been using one.
Hi Jessa, Welcome to the club that we didn’t want to join. I’ve been DX since 2012. My mobility problem is my left leg and foot drop in my left foot. Several things I wish I’d known. 1. When they reopen try an MS Therapy Centre if there’s one near you. https://www.msntc.org.uk/find-a-centre/ 2. In my opinion don’t rush for a rollator without professional advice. I’ve tried various mobility devices but recently saw an NHS Orthotist and now have a bespoke carbon fibre support. It’s taken me 8 years to find. Without this I could only get around with two sticks. I’d suggest seeing a neuro physio first and then a GP referral. The shock of an MS diagnosis is tough but it’s just a part of the journey. Some people don’t like that description some do but I feel it’s accurate unless you have a rapidly progressing disease. Most people don’t. Good luck take care and if I can help anymore let me know Good luck Adam
Hi Jessa,
Good advice from others. Do you have an MS nurse? They will help you get access to various different services.
I am similar. Left leg and foot drop. I had a toe off carbon fibre support which worked for years.
Now use walking frame, scooter etc. Have a motability automatic car with my scooter in the back.
Top tip, keep a MS diary of symptoms, appointments anything you’ve had to buy to do with your MS. (you can get VAT free as you have a diagnosis). My diary was invaluable when applying for PIP as showed my gradual decline in the equipment I needed.
Take care,
Jen
It is incredibly frustrating when you feel you have been left in limbo. I had hospitalised nearly 3 years ago with a severe relapse. I was diagnosed after arriving at my GP at 08:30 and my lumbar puncture was completed around 18:00 after MRI, chest x-ray and innumerable blood tests.
Obviously they want you out of hospital asap, but I was still very restricted in my ability to move. I failed the stairs test so had to stay another night.
There is stuff on the internet, but you will benefit enormously from the directed exercises from a good Neuro Physiotherapist.
Work out how you gain an appointment. This will differ according to where you live. If you in a large centre you may find the MS Nurse, MS Consultant and Specialist Physio work from one place. If you live in the sticks your MS Nurse is your best source of advice.
In the mean time I would suggest you concentrate on the exercises set out by the MS Society and MS Trust websites.
You seem switched on so I am sure you will sort it out.
I would recommend:
you do something (keeping doing what you can will slow any deterioration)
A relapse can be improved upon
until you get more guidance concentrate on
balance
core strength
and general fitness