Last reply 11 months ago
Uncomfortably numb… And tingly.

Hello all

I’m very happy to have found this site as I am new to MS and all the weird, confusing and scary shit that goes with it.

I think I was diagnosed last month but my neurologist is a bit vague and non comital. I have my first appointment with an MS nurse at the end of this month to discuss treatment options following some IV steroids which have had no discernible effect on the legions in my brain or spine. If anything my symptoms have got worse since.
My symptoms first came to light 10 months ago (but I have since realised I may have been experiencing them for longer. A couple of the symptoms I started with have settled down but some remain and are getting more pronounced. My left side is significantly worse than my right. It tingles and hums constantly whilst feeling numb all over. I also get really cold down that side also and my left leg feels a lot weaker than it should.
I also seem to have developed tinnitus at around the same time but not sure if that’s related.

Has anyone had symptoms last this long after a relapse and has treatment had any effect? Or maybe relief by some other means?

I know these symptoms are mild in relative terms so I apologise is i come across like I’m wining about it!

Thanks.

A

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


vixen
11 months ago

Hello @flatt79, what a familiar story! I got diagnosed around a year ago, my sister too. She also got somewhat of a vague diagnosis too, so your comment ‘I think I got diagnosed ‘ made me laugh! Yesterday I had a check up with my MS nurse and told her that even though I am diagnosed with RRMS, it actually feels like my life is one big relapse! It’s because my life, me, my emotions, my plans, everything has changed since diagnosis. The presence of diagnosis and symptoms are constant. But to be fair, it’s not all bad and there have been some positives emerging too.

I’m not expert but I don’t think steroids would have an impact on your lesions but a sage like @stumbler could advise on that one. You are really welcome here, this site is definitely one of the afore mentioned positives for me! X


stumbler
11 months ago

Hi @flatt79 and welcome.

MS can be scary at first. It’s a condition that we’ve all heard about, but know nothing about until it comes and bites us on the bum!

I can see you’re doing your research, as you’ve found us. But, be careful and stay with creditable websites like the MS Society, MS Trust, etc., to avoid the horror stories.

Steroid Treatment is little understood and there seems to be no time for the medical professionals to explain it. It’s not an immediate fix treatment.

Primarily, it addresses the area on inflammation on your Central Nervous System. This should bring the relapse activity to a quick halt. Then the body can start to recover the damage caused. However, it needs you to allow this recovery to happen, by resting/relaxing.

The Steroids will be helping this recovery over the 6-8 weeks following treatment. Recovery may take long than this.

The lesions that you can see are the results of the relapse. Residual symptoms can be left with you as a result of this damage, e.g. Sensory symptoms (https://www.mstrust.org.uk/a-z/altered-sensations).

Tinnitus may be a symptom of MS, but this is rare, dependant on the location of your lesions. (https://www.mstrust.org.uk/a-z/hearing-problems)

It is not unusual for a diagnosis of MS to provide an explanation for earlier unexplained medical issues.

Hopefully, the MS Nurse will clarify things for you. Do ask them about relief from the “tingles and hums”, as there are meds available to help this.

And, don’t worry about whining. It’s natural for us to want to rant. We all understand that.

Otherwise, try and take things easy. A balanced diet and a balance lifestyle help. And, do avoid stress. It does nothing positive for you and can initiate fresh relapses.

Hope this helps, but do come back if you have other questions.


flatt79
11 months ago

Hi @vixen, thanks for the response. Yes this site looks to be a really helpful tool and I’ll be sure to use it often.

I liken an MS diagnosis to being like a flood – even once the water has drained away you find that every little thing in your life has been saturated by it.
Hopefully things will start to dry out a bit soon!

Take care

A


flatt79
11 months ago

Hi @stumbler

Don’t worry – there will be more questions! SOOOOO many questions!

I had been told not to expect any immediate results from the steroids but I was pretty disappointed to find they they haven’t helped at all and that my symptoms have in fact worsened after receiving them.
I’ve only recently learned about residual/background symptoms and I’m hoping they won’t be permanent. Although they are mild in relative terms they are a right pain in the arse and make relaxing pretty difficult.

I’ll mention all this to the nurse but it would be great if there was a dmt that could help with these symptoms in particular. I’ll give those links a good look as well so thanks for those.

Speak again soon I’m sure!

Cheers


seanachai
11 months ago

Hi @flatt79,

I don’t quite understand a vague diagnosis coupled with discussions on starting treatments!

Just one word of advice; if your Neuro is being vague, non committal etc. – you want to consider a second opinion but try and avoid wasting valuable time if you can avoid it with a Neuro that does not work for you. I would also do research on Neuros and their background and see how much experience they have with MS are they involved in research etc….. question everything and do your R&D…

Hope it starts to get better for you soon.


nutshell88
11 months ago

I’ve always pushed all sort of treatments away since daignosed 14 yrs ago thats why right now i uncovered my feet and legs on bed because they feel burny hot lol but i distract myself i learnt to adapt it.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.