Last reply 3 years ago
Help! Is this part of MS?

Hi everyone, I’m just coming out of a relapse that affected the whole right side of my body (it was completely numb and I lost power in my arm/leg etc). The neurologist wasn’t sure if it was caused by old or new inflammation but gave me steroids anyway about 2 weeks ago. I’ve gradually been getting better but now I have noticed that I can’t feel or taste on the right side of my mouth (just on the inside) it’s very strange and I wondered if this is a part of MS as I haven’t burnt my mouth or anything! Do you think I should contact the MS nurses before everyone goes on their Easter holidays?

Thanks! 🙂

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stumbler
3 years ago

@AnnaMag , the steroids that you had a couple of weeks ago will still be working with you for the next 4 – 6 weeks, helping your body recover.

It could be that this symptom was there during this relapse, but you didn’t notice it with everything else going on.

In any event, do contact your MS Nurse, for your own peace of mind over this Bank Holiday weekend.


Anonymous
3 years ago

Thanks @stumbler , I’m kind of relieved that I’m not being neurotic! I’ve never seen anything in any literature about this kind of numbness and so I didn’t really think it could be MS-related. Thanks for putting my mind at ease, I’ll ring the nurses ASAP 🙂


stumbler
3 years ago

Have a read of this @AnnaMag :-

http://www.mstrust.org.uk/atoz/dysaesthesia.jsp

Does this put it into words for you? 😉


Anonymous
3 years ago

That’s perfectly put!! Thank you @stumbler 🙂


sharlou
3 years ago

Hi Anna
I have just recently been diagnosed with RRMS
My relapse started with the right side numbness & the same as you with the mouth. I have had severe impaired taste for 17 weeks now & yes it’s part of the MS. I put it down to the MS attacking the Thalamus which controls the cognitive & the taste & feeling etc which is why I have the numbness. Mine was my complete right side from head down to the ties. Completely central line. I have had 2 relapses now in 6 months & had steroids 3 weeks ago. I now have left the cold burning in my face & right arm & still no taste. I see my neuro on Thursday & there’s every chance dhe will get me started on Avonex do hopefully that will sort this out & keep it at bay. Not something I want to have but if I can get back to some kind of normal it will be worth it.
Really hope you get it sorted & start to feel better very soon x


Anonymous
3 years ago

@annamag, I also had numbness of the tongue in my early days with ms. I had actually forgot about it. Symptoms come and go and it will drive you nuts trying to assign a blame. But I think we can all agree ms can cause tongue numbness! My damage too was mostly confined to my right side. I have been battling ms for 10 years now and can only suggest that you treat it as aggressively as possible but enjoy life to the fullest. Best wishes!:-)


Anonymous
3 years ago

Thanks everyone who commented here, I was really freaked out but then worried that I was being neurotic too!
Since this was posted 4 1/2 months ago I’m still in the same relapse, it got more aggressive and began to work faster, affecting more and more of my body 🙁 my neurologist prescribed a mix throughout the months of tablet/IV steroids but they didn’t help in the long term, so I’m sitting writing this from my hospital bed on my rest day from plasma exchange, 2 down 3 to go! My aim is to be out before August begins as my birthday is on the 5th and I downright REFUSE to be in hospital over my birthday, and my neurologist thinks this is optimistic/realistic 🙂


stumbler
3 years ago

Good luck, @AnnaMag . I really hope that you can achieve your goal.


Anonymous
3 years ago

@AnnaMag, I am so sorry to hear how long your relapse has hung on. I hope that you have a good neurologist that will be smart and treat you aggressively to prevent any serious and lasting damage. Has he suggested changing DMDs? I am starting Lemtrada next week which would be an excellent choice for you to halt the progression of your disease. It only requires 8 treatments which halted or reversed the progression of 80% of clinical trial participants for the 5 years that the trial was conducted. It is conceivable that you would never need another treatment and it is especially suitable for patients with aggressive MS at such a young age. Look into it. There are several satisfied patients that have blogged about their experience here. @tracyd is one of the most recent. You seem to be active in your own care. It is important to read as much about your disease and medication options from reputable sources as possible and be your own self advocate. Do not delegate that duty to others. This blog is a good resource to learn about other MSer’s experiences. I hope you recover in the next 2 days and check out of the hospital. Ask your neuro about outpatient care in the future so that you do not have to spend time in the hospital. I live in the States and it is rare to hear about MSers requiring a hospital stay. I wish you the very best! You will get better soon and this will be a distant memory!!:-)


tracyd
3 years ago

@Annamag

My MS took the feeling on my left side of my body in the first big relapse, some of it recovered quickly, some too much longer. That relapse was the first of 6 in just under 6 months, each very distinct and impacting another part of my body. As @orlando27 said 90% of my recovery has been with the help of Lemtrada because my MS was so aggressive that nothing else would be effective enough to stop the rapidly evolving damages and the lesions breeding like rabbits in my brain and spine.
I think you need to speak to your MS nurse ASAP and also get to the Neurologist (I always ask this but is your Neuro an MS specialist? I think it’s important that we have someone with a specialisation in our condition rather than a general ‘head electrician’ where ever possible. I’ve had to explain my condition and the treatment I’ve had to more than one Neurologist who wasn’t aware of it)
Steroids are great, but they are a temporary fix, I’ve recently started introducing Turmeric into my diet, and it works beautifully for my general 43 year old creakiness, but it’s also very anti-inflammatory and may help with your recovery. Oxygen Therapy is another thing I’ve found really beneficial for cog-fog and general wellbeing. Where ever possible I do encourage people to actively support whatever treatment they’re on with anything that can help, I think it gives us all a bit of a boost to be ‘doing something proactively’ – even if it just keeps us out of trouble while we watch for changes 🙂
Always happy to have a chat if you need a friend xx

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