Hello everyone, I’m in my twenties and I’m newly diagnosed after one episode of optic neuritis. All the testing I’ve done pointed to a diagnosis. No need to say that I feel very paranoid in my body. These last days I’ve noticed a weird feeling in my legs… It feels like they are restless, they are twitching and it feels they are tired and heavier than usual. This is not a strong sensation but I can feel it and it bothers me. I walk normally and I can feel everything it’s just my legs feel weird. I’m sorry for bothering you with these silly concerns it’s just I’m all new to this and I still have to figure out what’s normal and what isn’t. Should I worry about it or just let it go? Thank you for anyone who reads this…
Hello! I’m in a very similar position to you. I had an episode of numbness in my hand and face last year and have just been diagnosed with MS. The advice I’ve been given by one of the MS nurses is to be aware of your symptoms and if it persists for more than 24 hours and gets noticeably worse then that’s when you should seek help. I too am getting strange feelings in my legs but it seems to come and go and hasn’t spread or got worse. I am by no means an expert though. If you don’t feel right in yourself then perhaps see if you can call your local MS team. I hope you’re ok? Getting a diagnosis is a real shock to the system huh?
Hello,
Poor you. Being diagnosed with MS in this time of lockdown and social distancing is even harder than ‘normal’. Generally, everyone is supported by an MS nurse. If you’ve not been given the contact details of yours, try phoning your neurologists secretary and ask for the MS nurse contact.
Legs feeling generally ‘weird’ does go with the diagnosis I’m afraid. It could be that it’s a small relapse. If it’s not causing pain or affecting your mobility, then taking high dose steroids (often prescribed for relapses) would probably be overkill as they are pretty horrible to take. Steroids only aim to reduce the time it takes to recover from a relapse - they aren’t a cure. Have a look at https://www.mstrust.org.uk/about-ms/ms-symptoms-and-relapses It might help you to understand what’s going on in your body.
You could also have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid It might help you to know what disease modifying drugs (DMDs) are available and what you may be offered once you are sorted with an MS nurse.
Best of luck, come back here for help, support, information and/or to share experience. There’s always someone who will understand what you’re experiencing.
Sue
Hello! Thank you for your reply. I’m in your shoes, I feel that. Thank you for asking me if I’m okay. Well to be honest not too much because it was so unexpected, it’s hard to go from healthy college student to chronic sick. It’s so shocking to the system, like you said. How was it for you to accept the diagnosis? I’m interested because so far I’m not doing a great job ahah. It’s been one week or so. Thanks, I’ve also read that a relapse is when symptoms do get worse. How does it feel in your legs? Because for me it hasn’t gotten worse but it’s been stable these days. I just notice fatigue in my legs. Like standing up too much I can feel bricks in my legs and I’m not even sure it’s normal.
Thanks for the reply I appreciated it so much! Very kind, thank you for the supportive words. I don’t have a Ms nurse yet because I am freshly diagnosed and it’s gonna take some time, also to choose the right medication and such. Well you are right it’s definitely hard to be diagnosed in times of social isolation but I’m lucky I’m with my family and I have the time to digest this big news without feeling too guilty with other people. So you are saying that with this disease is normal to experience fatigue in your legs? I just started freaking out because I was fine and now all of this is happening so it takes some time. I have taken steroids for my first relapse (5 days infusion) and it took me a week to get over it because I felt so weak I couldn’t stand up from my bad so I’m not sure it would make any sense for me to go through that again because my legs feel weak. I’ve read the links and the website is very useful.
To Saraaah_Lou and the OP
Everybody’s experience is very different with MS, although we often share symptoms.
The chances are that once you get over your current symptoms, have some physiotherapy (hopefully, given the current situation!) and get on a good disease modifying drug; for several years to come, you’ll regain your fitness level. You may even improve on your ‘normal’ fitness.
For about 10 years after my first relapse, I spent most of my time looking and feeling much as I did before MS made its unwelcome intrusion into my life. I wasn’t disabled in any way, looked and felt ‘normal’. I still worked, drove all over the country, met a lovely man and got married. My active disability started properly about 15 years after the onset. And I was unlucky with drugs, having spent the first 5 years with no DMD (there were none available until 2002!) and then having a stupid system that doesn’t like drugs and kicks off with bad side effects.
I’m now 23 years in; yes I’m quite badly disabled, but my experience is nothing like yours would be expected to be. The support systems are completely different to 20 years ago. There are so many DMDs, you will have MS nurses to support you and the NHS is utterly altered for people with MS.
I think for most people today newly diagnosed with relapsing remitting MS, life will get back on an even keel. You’ll very gradually feel better - often a relapse can take months to recover from, it can be so slow that you don’t even notice as you recover.
And when you have wobbles, unusual symptoms, relapses, questions or just fears, there’s the MS Trust (do a search on the words MS Trust, plus whatever you want to know about), the MS Society (look at the tab above here ‘About MS’), plus this forum.
Stay well, keep positive and good luck.
Sue
Hello Sue, thank you so much for your message. Everything started for me last June after I got an infection from an insect bite. It was so itchy and I kept losing my balance (not good for a Nursery teacher who’s up and down all the time!). I was like this for a week and couldn’t get an appointment at the doctor’s. On the Saturday I fell and sprained my ankle! On the way to hospital I noticed that the left side of my face and my ear felt numb as well as my arm and my hand. The numbness faded away after a week or so but my hand took ages to recover! As for my balance, I convinced myself that that was down to my ankle but it took about 4 months for me to feel that I could run safely again and a bit longer for me to go to Zumba classes. The good thing is that in February I was diagnosed with clinically isolated syndrome which meant that I could start on Copaxone. In the process of deciding which drugs would be best for me, I got to meet one of the MS nurses who is lovely and who handed tissues over to me and my husband as we blubbed and asked her hundreds of questions! It took a while to get the Copaxone as the medication needed ordering and making up but I’ve been taking it for a month now. My MS diagnosis came through 2 weeks ago and although I knew it was on the cards it was still a shock. Thanks again for your message,it does seem like there’s a lot of support out there and I’m so grateful for it. At the moment I’m fine physically (apart from numbness which comes and goes) so my MS doesn’t feel real!
Hi, I’m in the same boat as you sadly but we are all in this together. I’m 21 but had my first episode at 20 with optic neuritis and went completely blind in my right eye for about a month. I’m also newly diagnosed and scared as to what it means for my life now. From what you have described it could be spasticity however I’m not an expert. I would say keep mindful of it and take caution while walking as tired heavy feeling in the legs can affect your coordination.
Best of Luck
Hanna
Hi All I was diagnosed on Friday and I have a “spastic leg” with a stiff gait. Ive been prescribed baclofen. I just feel numb now. At first I had the attitude of well at least they found a brain on my mri and there are people going through a lot worse. Im 30 with a 2 year old daughter and im worried about my tiredness and leg pain x
Hello Moff
I’ve just seen your other post and thought this one was the best to answer your questions about Baclofen on.
Diagnosis with MS never comes at a ‘good’ time, but this is a particularly bad time due to the problems associated with hospitals given the Covid19 situation.
It’s bad luck to have MS, and thus have to ask questions on this site, but welcome to the forum anyway!
A spastic gait and stiff leg are typical symptoms for which Baclofen is prescribed. It’s a muscle relaxant and is generally well tolerated by most people. You would normally start with a small dose and increase it as needed. It comes in 10mg tablets and while it can lead to weakness, generally the muscle relaxing properties are what’s needed to ease stiffness and spasticity.
With regard to your tiredness, many (most even) people with MS experience fatigue at some point. Have a look at https://www.mstrust.org.uk/a-z/fatigue This might give you some ideas about how to manage fatigue. It’s going to be difficult with a 2 year old, but basically, it’s all about doing little and often. So breaking tasks up so you’re not for instance attempting to do too much at one time.
If you’ve been given the contact details of an MS nurse, ask for some help and guidance as to what happens next for you and what s/he can do to help.
Best of luck.
Sue