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Numbness in my mouth

I have been diagnosed now for four years and I’m having a relapse now.

I finished my five day course of steroids yesterday and still have yet to finish my course of tummy tablets.

This morning my numbness feels so much worse, my left side, my fingers and worryingly my mouth. I keep biting my lip to see if I can feel it and I can’t. My feet are numb more or less constantly now. My mouth was numb a couple weeks ago but it came back but this morning it’s back. I lose my balance a lot and fall and I get so frustrated with myself. My family are so supportive and want me to slow down and accept their help around the home but I’m so critical and try so hard not be and stubborn also as I won’t let this thing win.

I’m due to see my consultant in October, where my nurse says he will probably talk about disease modifying treatment as I have never had any.

I’m just very worried and tearful this morning. Just wanted to vent.

Hello

It’s not unusual to have a bit of a ‘come down’ from steroids, so that might account for your feeling so rough and tearful. Not that you need to have just had steroids to be feeling a but crappy just now. It sounds like you’ve had a nasty relapse.

Don’t forget that steroids are supposed to help shorten a relapse they aren’t a cure. And of course, they don’t always work either, they are contrary beasts.

It sounds like you should be on a DMD, just to avoid relapses as bad as this one if possible. Is there a reason why you’ve not taken one up to now? Is it worry about needles? Or side effects? Some people are just reluctant to take drugs. But have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid There are so many DMDs available now, it’s a good idea to get on one.

Sometimes you do have to accept that to get over a relapse you need to slow down a bit, make sure you get enough rest, accept that sometimes we all need help from those close to us. Apart from anything, the people who love you perhaps need to take care of you; watching someone you care about pushing themselves hard and stumbling about because they don’t want to appear weak is upsetting. It would help them to be able to help you.

If you have ongoing symptoms, if there’s a bit of residual damage, maybe you could also do with some help from physiotherapy? Do you have an MS nurse who could refer you? Or perhaps there’s a community rehab or physio team to whom you could be referred by your GP if you already aren’t on their radar?

With regard to the numbness in your mouth, that’s a nasty little hidden effect, something that other people can’t see, but affects you quite badly. The only advice I can give is to eat slowly, pay attention to what you’re eating and drinking. Biting your lip, tongue, cheek, etc isn’t nice, I’ve done it quite a lot. So it’s all a part of slowing your natural inclination to just zoom around, maybe pretending to yourself that you can just ignore MS. This relapse is reminding you that you can’t.

I’m sorry about that. It’s not a nice thing to have MS jumping on your back and saying ‘oy, remember me?’ But try to treat yourself and your body kindly and allow it to get some rest.

Sue

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Hiya

sue has given u good advice.

All will work out.

i fell this week sinking my teeth into the inside of my mouth, ouch,if I could feel it! Dentist made great job of fixing the cracked tooth (front one!) and carpet burns on knee easing!

i can laugh now but you just gotta deal with stuff when it happens and try not to worry about what might happen!

take care, ellie

Hello Pavnicky,

RE: "I lose my balance a lot and fall and I get so frustrated with myself. "

Just wanted to ask - have you discussed falls prevention with your GP or MS Nurse?

So important. You need a Care Plan if you don’t have one already.

My confidence was badly affected by falls - I’ve had broken fingers and concussion due to falls at home

and outside.

It might be worth having an assessment and Care Plan - it will save you trips to A &E and a lot of anxiety.

It’s worth a trip to NHS Wheelchair Services, if you haven’t been already. A powerchair or a scooter will help prevent a

nasty fall. http://www.virgincare.co.uk/

And perhaps - time to have some home adaptations - grab rails etc.,. your borough council can help with this. They will send

an OT to do a home assessment. It all helps. Oh and keep their letters as evidence for the DWP and PIP.

Hope you improve soon.

Take care,

Fay

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I think I’ve had symptoms long-term but ignored or rationalised them. Including numbness in my mouth on the left side. It feels like I’ve been to the dentist and had an injection of novocaine, or whatever dentists use now. While having morning coffee I begin to feel numbness creeping from my cheek to my mouth. I assumed it had something to do with pursing my lips to sip hot coffee. Two hours later the sensation is 90% gone.

My first scary event was an attack of vertigo in June. That put me in the emergency ward. There they diagnosed MS from the MRIs. Since then I’ve been tested for the JC virus and had four treatments of IV steroids. I start tysabri next week. My only problem now is miserable pain in the left arm that comes out of nowhere. Originally the neuro said it was from blood clots. But the pain moves from shoulder to elbow then elbow to wrist then back to shoulder. Just yesterday I had an attack as I was jogging. Luckily I had brought percoset along just in case. I’m taking pradaxa for the blood clots and propranolol for tremor in my left arm.

kaypeeoh