Last reply 1 month ago
Sudden onset of weakness in left leg

Hi all,

The last couple of days I have been experiencing some weakness in my left leg, going from the area around the base of my spine all the way down to my foot. Sometimes it extends upwards into my left arm and shoulder.

This is a totally new symptom for me and otherwise I feel well but this comes in waves and is really uncomfortable (though not painful).

I contacted my MS nurse about this this morning and my neurologist has asked me to come in to see him in six days time.

I am wondering if my recent MRI has shown new lesions or if they are going to switch my meds. I’ve been taking Copaxone since diagnosis 1.5 years ago.

Does anyone else experience this weakness on one side of their body?

I am kind of freaking out right now to be honest and I can’t sleep. My mind races from thinking it could be something worse than MS to my MS progressing, I’m just so panicked. I feel like ever since my MS journey began I am so afraid of my body and what’s to come. Every little ailment I have I freak out it is something bad because I’ve been down the road of having been told I have an incurable illness.

I am generally quite a positive person and I just got on with things after diagnosis but this health anxiety is really getting to me now.

Sorry for the super long post, hoping there is someone out there who can relate!

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lisamarie6
1 month ago

@crunchyfriends Hi, I had similar situation a few wks ago. Numbness started in my left hand & spread to my legs then upper body & then my right arm . It lasted for 8 wks but like u I wasn’t in pain but just very uncomfortable burning pain with pins & needles . It was driving me crazy . I was put on steroids for 3 wks . My new MRI shows 2 new lesions on spine so I’ve been told to come off Copaxzone which I’ve been on since jan this year & start Tysabri. I was only diagnosed Nov 2019 so still getting my own head around it . We just have to try stay positive . Hope your numbness passes soon 😉


vixen
1 month ago

Hello @crunchyfriends, at least you’ve done the right thing and have a quick referral. I’ve been diagnosed over three years, but still get flare ups from my original relapse including one-side weakness. It’s really hard to work out the normal processes of our bodies after diagnosis. And yes, it’s easy to attribute every ache and pain to MS. I’m in my 50s, so there’s the addition of separating MS from the usual aging process too. Also to add, my neuro said that in the last four months, all her patients have reported a worsening/flare up of symptoms during Covid. Stress or change of routine can cause havoc with MS so its really important to try to minimise stress if at all possible. Good luck for your appointment, maybe you could update us next week? 🙂


itsmewithms
1 month ago

Hi-
That sounds familiar to my RRMS days and when I was on Copaxone. That was my first DMT but about the only thing available when I was Dx in 2005. Since then there are so many other options that it can be asked if it should still be prescribed…and yes there are cases:

But I would have a relapse of a sudden one sided thing (usually balance or gait related and once speech) and my Neuro would get me into an MRI very quickly), usually within 24 hours so it wouldn’t go away before it was visible, and if there was activity (a bright spot) I would be set up with an infusion of Sol Medrol/steroids to shut it down. This would stop it and within 48 hours I would feel 80% better. They find that the recovery is the same, apparently, if you don’t get the massive steroids but it is much faster. For me it was worth it…the stress of a relapse is intense. I feel for you.

But- in the RRMS phase they typically subside and it is just a matter of waiting it out, taking care of yourself, getting sleep, and not stressing…soooo much easier to say than do 😉 https://www.youtube.com/watch?v=D2frFMzPF5A&t=112s

Good luck – take care of yourself-


crunchyfriends
1 month ago

Thank you to you all for your replies. It really helps to hear other people’s experiences. I will be sure to update you after my appointment with my neurologist.

I think it would be beneficial for me to seek out some kind of counselling or CBT because ever since my MS diagnosis I cannot help my brain going to the worst places if I have any kind of health issue. I guess when I was experiencing symptoms of MS I thought it was the worse case scenario and it turned out to be true so now every worst case scenario I have in my head I feel could easily be true if that makes sense. When I was diagnosed my doctor told me I hadn’t lost my life I had just lost my presumption of health. I now really know what she meant by that. I just want to be healthy and live a full life but I’m so frightened by all the things that could be going wrong in my body.

I Don’t know if any of you had any kind of counselling after being diagnosed with MS but it probably would have been good to deal with these issues early on!


crunchyfriends
1 month ago

Hi all, I just wanted to give you a little update having seen my neurologist yesterday.

First of all it was so good to actually see my neurologist as the last 3 or 4 times it has just been a different doctor or a nurse. Don’t get me wrong, the MS nurses are fantastic. But it’s good to be able to speak to the neurologist directly.

My last MRI (June 2020) showed a number of new small lesions on the left side of the brain. As a result, my neurologist is recommending I stop taking Copaxone and switch to either Tecfidera or Tysabri. He ordered a series of blood tests and one of those includes a test to check for antibodies of a virus which will impact whether or not I can go on Tysabri. I’m sure a lot of you out there know a lot more about that than me!

He did a full neurological exam and said it was really strong and good and he couldn’t see any further deterioration in me which is good. But he also couldn’t really correlate my new symptom of random waves of numbness in my left leg, arm, shoulder. He said normally there would be lesions on the cervical spine causing this but my cervical spine is really clear. He also said the new lesions on the left side of my brain wouldn’t affect the left side of my body. But he did mention some kind of like mini lesions (I wish I wrote it down!) that can often be difficult to see but can cause these kind of random sensory issues that come and go. He also asked had I seen my GP to check for any other issues- I said I hadn’t so he has included some extra things in the blood tests such as checking my thyroid etc. just to be sure.

So now I just have to wait for the bloods and see both if they indicate something else going on in my body and also to see what medication I can try next. The reason he suggested Tysabri and Tecfidera is that they are both safe to keep taking up until at least conception and I’m at the age where kids may be on the cards in the next few years.

Anyway apologies for the long post but that is the full update. I’m feeling more positive but still a little concerned that there might be something else going wrong with my body! As if MS wasn’t enough right?! 🙂


itsmewithms
1 month ago

Glad you got in to see your Neuro and have some explanation. I would always imagine my system rewiring around the damage when ever I had an attack…give it some healing time and space as well as good care and diet/food. I’d say “heal thyself” 😉 Good luck-

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