Anyone know of an MS forum as good as this one?

[1985mum]

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 🤔 and at best it could all be under the umbrella of the dysautonomia.

[Hidden]

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 Sjögren's has been very MS-like: hopkinssjogrens.org/disease...

I found the international forums - Neurotalk and Sjögren's World the most helpful regarding autonomic dysfunction (as dysautonomia is known in U.K.)

neurotalk.org/

sjogrensworld.org/forums/

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 Sjögren's I'm told.

When nothing more showed up and prior to my diagnosis of Sjögren'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.

[1985mum in reply to Hidden]

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.

[1985mum in reply to Hidden]

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.

[Barnclown]

🦉Twitchy has a lot of experience of this

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 👍)...& 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

Am glad you're here with us in the meantime

Courage

🍀😘🍀😘 coco

[1985mum in reply to Barnclown]

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 MS😞I have a friend who has primary progressive and I saw him today and it just hit me what a debilitating disease it is.

Only time will tell...

[Barnclown in reply to 1985mum]

Well said! Good plan! 👌👍🍀😘

[Curly1430 in reply to 1985mum]

Hi 1985mum

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 it’s very similar to lupus. MS , ME if you look it up on google and see if you have any questions just mail me I’d be glad to help u x

[Penelope-Mary]

All the best for tomorrow's scans 1985mum. I'm glad your illness is being followed up after such a long time in the wilderness.

Have you been tested for APS?

Let us know how it pans out.

🍀🍀🍀🍀🍀

PM

🐚

[1985mum in reply to Penelope-Mary]

Thanks PM. I'll need all your well wishes as I lie in that tunnel😉

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...

[Penelope-Mary in reply to 1985mum]

I'll ask around if you like and get back to you ..... and bravo I could not be as brave in the tunnel

🎩 off to you!

🤗

[1985mum in reply to Penelope-Mary]

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 somewhere😕 don't really want to go out there!

[Penelope-Mary in reply to 1985mum]

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'.....

🤔

[1985mum in reply to Penelope-Mary]

Ok I mustn't have looked hard enough😔 I know Epworth Cardiac Unit is very highly regarded so thanks for that suggestion. I'll have to google a bit harder💪and suggest that to my gp!

[Penelope-Mary in reply to 1985mum]

I would be in a fluster right now with these investigations ahead of you so it's a pleasure to be of assistance 😘

Hugs 1985mum, here's to a definitive dx and corresponding excellent treatment

🌷🌸🍀🌸🌷

PM

[Penelope-Mary in reply to Penelope-Mary]

epworth.org.au/Our-Services...

[1985mum in reply to Penelope-Mary]

Thanks so much PM. I don't know what I'd do without the understanding people on here😉

[Penelope-Mary in reply to 1985mum]

😘😘😘😘

Agree 👍🏼