My numbness is spreading and someone suggested researching into MS.
My face numbness has spread to both sides and tongue and throat as well as my right forearm on and off.
I'm not particularly panicking because I have my MRI/MRA on Tuesday so anything sinister will show on that.
At worst I could be having a series ofmini strokes ๐ค and at best it could all be under the umbrella of the dysautonomia.
Written by
1985mum
To view profiles and participate in discussions please or .
17 Replies
โข
It's horrible to have this numbness I know - I've had it myself to some extent, but not as badly as yours. Which areas will you have checked with MRI and when do you get your results? Presumably they will get back to you very soon if anything shows up to suggest that you've had a stroke or mini strokes.
Have you had or been offered a lumbar puncture to rule MS in or out yet?
Re MS forums - there are none on HU as far as I know. I looked because my version of Sjรถgren's has been very MS-like: hopkinssjogrens.org/disease...
I found the international forums - Neurotalk and Sjรถgren's World the most helpful regarding autonomic dysfunction (as dysautonomia is known in U.K.)
Mine tends to be up the left side of my face, lips, gums and nostrils and around both eyes - but it also affects both arms down as far as finger tips. I've had tests for MS and also nerve conduction studies, tests for strokes and lumbar puncture. The only thing that ever shows up for me is an inflammatory process occurring (paired o' bands in my CSF) and some white matter in my brain - both relating to my Sjรถgren's I'm told.
When nothing more showed up and prior to my diagnosis of Sjรถgren's, the previous neurologist described this as functional in his letter. This was most unhelpful of him!
But to me he described it as my brain having a very efficient response to severe pain and distress - like a very good fuse box which shuts down after a power surge. This explanation did help me understand better because my stroke like events occurred during my most physically traumatic year ever. I later discovered that I have an allergy to Tramadol and Nefapam that makes my side go numb.
Otherwise, in my case, I suspect confirmed arthritis of my jaw and neck and lumbar region and hips as contributors - plus some autonomic dysfunction.
Just now it is the deep resting pain in my feet and legs and arm weakness that cause the most bother because I've learnt my lesson re Tramadol but can't find effective pain relief that I can tolerate.
Sorry if none of this stuff is helpful but you have my sympathy.
The only MS forum in U.K that I found was the one associated with the MS Society - but I only used it once or twice as I don't have MS.
Thank you for the links Twitchy. The Hopkins one is particularly interesting re the importance of the difference between MS and sjogrens and it highlights how similar the two diseases are.
I'll spend some time trawling through the forums for snippets of info. At a glance they both look like quite a goldmine of info.
Sorry I forgot to say my MRI is on Tuesday and I can ring him for the results. Also the diagnostic imaging departments here down under are required to report urgently if there is something that requires immediate attention.
Mention of a lumbar puncture has been thrown around but my doc is not one to order it unless totally necessary.
My experience goes back to the 1980s when I was in my 30s...within a decade signs & symptoms had progressed enough so that the NHS was investigating me re MS (my infant onset lupus diagnosis had been lost...I was unaware I'd been diagnosed...this lupus was finally recognised & treatment begun 6 years ago)
for what they're worth, here are some thoughts:
Although my personal experience of neurology is limited to investigations into my spondylosis & into my peripheral neuropathy, face & leg numbness + foot drop (at the time my SLE was unrecognised so neurology was testing me for MS) I did attend a seminar set up by my univ hospital Rheumatology dept on SLE & neurology....my impression is that severe sudden onset persistent signs & symptoms like yours are exactly the sort of thing that warrant a Multidiscipline Team approach....and the prime players should be neurology & Rheumatology.
am sure you'll get better informed replies from others with more experience, but I've just flicked through our Big Fat Friend: Johns Hopkins' The Lupus Encyclopedia...& am wondering whether if I were in your boots I'd want to be looked at more closely re demyelinating syndrome (aka lupoid sclerosis...a type of CNS demyelination) due to SLE, e.g. lumbar puncture + MRI of brain (you're having this ๐)...& I'd expect certain blood tests to be run: immunoglobulin G, oligoclonal bands & myelin basic protein
Basically, my chronic Neuro-cerebral signs & symptoms are similar to yours...I'm not pushing for further investigations because my daily oral combined therapy treatment plan is damping my N-C s&s down (hydroxy + amitriptyline + myco + pred) AND my rheumatologist thinks I'm fairly stable now. But I'm keeping my eyes & ears wide open on this subject. And am v much feeling for you as you endure living with these s&s while pushing the health system for diagnosis
It is interesting to note that lupus and sjogrens sufferers have these symptoms as part of the disease course. It's actually a relief because I still strongly believe my weakly positive ANA is not incidental and that some form of inflammation is playing havoc with my ANS and in a few months it'll move on to something else like seems to happen with me.
I think investigation into MS and demyelinating conditions is still warranted though as I would hate it to be overlooked if this was what is wrong. So the MRI is a good starting point there.
I really hope it's not MS๐I have a friend who has primary progressive and I saw him today and it just hit me what a debilitating disease it is.
My name is curly iv been unwell for nine years now and a lot of my symptoms are the same as yours I got diagnosed with behcets syndrome itโs very similar to lupus. MS , ME if you look it up on google and see if you have any questions just mail me Iโd be glad to help u x
Thanks PM. I'll need all your well wishes as I lie in that tunnel๐
Yes I've been repeatedly tested for APS.
Btw...you don't happen to have had or be able to recommend anywhere to get the tilt table test done in Melbourne do you? The doc is in Sydney so he told me to organise it thru my gp so I can take my pick of where I want to be referred...
That would be great! I know the Royal Melbourne Cardiology Unit do them but I can imagine the wait time would be horrendous! Other than that I can only find info on one out in Shepparton or somewhere๐ don't really want to go out there!
Epworth in Richmond has a cardiac unit which I went to for mitral valve investigations and they were very pleasant. I googled them and they do the 'tilt table test'.....
Ok I mustn't have looked hard enough๐ I know Epworth Cardiac Unit is very highly regarded so thanks for that suggestion. I'll have to google a bit harder๐ชand suggest that to my gp!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.