Facial numbness progressing down body

New diagnosis and before diagnosis
1

Hi all :slight_smile:

I’m convinced that I have MS (or anxiety/ migraine according to Dr). It started Dec 22 with numbness on my cheekbone, lips and spread to my shoulder- all right side. I thought I was having a stroke- Dr (we’ll call him Dr.P) said it was an atypical migraine.

This has been on/ off every month or so since then- seen 2 different Drs, but neither seem concerned. The 2nd Dr (we’ll call him Dr.B) said it was simply unexplainable and that many people can have numbness on and off for years with no explanation.

Dr.P said on Monday that an atypical migraine is nothing to worry about, unless it changes. So this week I’ve noticed my middle finger getting stiff, and my right leg feeling numb/ weak/ sensitised. So I phoned Dr. B and he said he’d do a reflex test next week and that “many people come in with those symptoms, but not many end up having MS”. I asked if an MRI was warranted and he said that a neurologist would decide that, based on the reflex test.

My tongue feels tight and large, too. And I’ve had frequent night urinating for months (probably due to giving birth, but hey, you never know) AND unexplained tight chest/ difficulty breathing (chest x-ray all clear) which I now realise could be the MS hug.

I’m kinda trying to be ok with a potential MS diagnosis, which is kinda stupid because it may not be MS. MS sounds super scary and debilitating- I’m scared of choking. But many apparently go on to live pretty normal lives, and life expectancy is only 5-10 years less than usual.

I don’t know why I’m writing this, I just want some support and advice/ your experiences I guess.

2

Hi Ffi24

Request a referral to see a Neurologist (do not let the GPs fob you off) - who will undertake reflex testing amongst a bunch of other tests - and will be better placed to make a decision on what may, or may not, be going on.

In the meantime, keep a diary of symptoms, basically - what, when, how long it went on for. This will be a useful reminder for when you see the Neurologist.

Many neurological symptoms are sensory (including migraine), in that how something feels can be very different from how it is physically.

I have MS, most of my symptoms are sensory, for instance - pins & needles, numbness etc. which has included a few bouts where my tongue felt large (it was the same as usual - it just felt weird).

Heat/Cold can make symptoms worse, more frequent etc. When the weather starts to cool off things should hopefully improve.

Keep your symptom diary and let us know how you get on.

3

Good to hear that a GP is up for doing a reflex test. Mine did, the very first time I saw her with neuro-type symptoms, and that prompted an immediate neurology referral, but I get the impression from what others have said on here that not all GPs feel confident enough to try.

Well, your GPs haven’t exactly been falling over themselves to investigate what (if anything) is the matter - have they? - but it does sound as though they are on the case now. I hope that you are on the path to get some answers soon, and that any tests you end up having prove reassuring/informative and happen fairly quickly.