Handhold please - A&E after sudden numbness

[OliveRanch]

I’m really sorry, shamelessly posting for traffic. My other thread is here www.mumsnet.com/talk/autoimmune_disease/4602352-should-i-give-up-pursuing-a-diagnosis?page=1

I’m waiting for an ambulance. I suddenly felt very peculiar this evening and both my legs went numb, although in hindsight I haven’t been quite right all day. I now can’t walk properly. Both legs as well as my arms are burning, my hands, arms and back of my neck are tingling. The soles of my feet feel numb. I’ve felt unwell for a while but never had anything like this before, it’s escalated so quickly. They are talking about a CT scan and MRI although I think the actual problem is b12 and/or folate anaemia.

I’m on my own and don’t have anyone to go with me. I’m terrified of A&E after a very traumatic incident there a few years ago. I’m less worried about the scans, it’s just having to be back in that waiting room. Especially without support. I know I need to be brave though.

I just need a little bit of a handhold / distraction. I’m so anxious

It may be that she’s a really experienced MS specialist, but you’d think he’d have given you warning that she’s out of your area given your current issues.

This is exactly what happened to my freind @weegiemum CIDP. He spent a year in hospital immobile, having immunoglobulins and many other tests & treatments. He can walk now but limited mobility.
There are many conditions with neurological symptoms. I have Sjogrens with neuropathy and during flares my symptoms are very similar to yours OP. Numbness, difficulty walking etc. My neurologist found it via tests (anti A ss-ro and anti b ss-la) ana and Reumatoid factor. The rheumy confirmed it. If it's a connective tissue disease they can tell by the pattern of immunofluorescence which one ie lupus, scleroderma, Ra, Sjogrens. Hopefully it's something 'simple'. Mine goes crazy after viruses. Covid/booster sent it off the scale. Anecdotally, health care professionals are seeing alot of weird Neuro symptoms post Covid/vaccines.

Managed to get through to the outpatients department today who looked into the referral for me. He said ‘typical of a&e referrals it isn’t very clear’. He spoke to someone else about it and apparently it’s expected to be triaged in the ‘next couple of weeks’ and then I’ll be added to the waiting list, but he said the neurology department is very busy. Apparently I haven’t been assigned to a specific neurologist yet so I can’t speak to anyone’s secretary. I guess scans are not going to happen any time soon, which is a bit worrying as both my GP and the 111 dr said I needed to be having the scans last Friday.

I checked my health insurance and it clearly states that any problems or ‘symptoms’ that arise within the policy’s lapsed period won’t be covered should I reinstate it.

I can’t afford an MRI privately. I could just about afford a private neurology appointment but I’m not sure that’s really going to help me get scans any faster.

I feel like I all I can do is wait and hope it doesn’t happen again in the meantime. Like thousands of others waiting for NHS investigations and treatment of worrying things at the moment.

Don’t forget that the other option open to you, particularly if symptoms get worse, is just to go to A&E.

I would scrape together the money for a private neuro appointment and go with a detailed list of questions. If you then cannot afford the scans he or she wants then say so and ask that a letter goes to your GP stating what is needed.

Ime scans etc can be arranged quickly if needs be

That’s been covered already.

OP could get a private neurologist appointment asap, but as she can’t afford the scans she would still be referred back to the NHS for those, either via her GP or to the consultant’s own NHS practice, which will feed her back into the same queue she is in now.

In practice urgent NHS MRI scans don’t mean immediately unless cancer or something else immediately life threatening.

I saw this thread mentioned in another thread so I thought I’d come back and update. I also updated my original thread in Health.

Things are moving forward although I still don’t have any definitive answers.

I saw a neurologist a few weeks ago and had various tests. They found I have Hoffman’s reflex on one side and some other hyperreflex (can’t remember which) so they ordered an MRI of my spine and head. I had the spine MRI last week and am having the head scan in a few weeks.

Since the first episode I’ve had another couple but not as severe. It’s like I’m not fully in control of my left leg when I’m walking but it passes after a few days.

Obviously I’m worried, and if I’m not careful I go down a rabbit hole of fear so I have to keep it in check. Probably the biggest worry is I have no one to help me if I become unwell and all of this has highlighted the isolation I feel around not having parents, siblings or partner. Just wish I had some family support.

I’m not sure when I’ll get the MRI results as I think there’s a shortage of people to interpret them atm but in the meantime I’m just trying to go about my life (albeit a bit rubbishly) and not dwell on it as much as possible.

Pleased you are getting somewhere, but I am at a loss, to see why you are going back for the Head MRI for a few weeks, mine have always been done at the same time, that seems very odd to me. I have had MS for 10 yrs.

@Roselilly36 yes I was baffled by that too and frustrated as obviously it’s not a pleasant thing to go through twice. I think it’s because the place I had the spine MRI done (an NHS MSK clinic) don’t do brain MRIs but they had a slot open up. I’m having the head MRI done at the main hospital.

I have had my spine mri done only once and it was separate to my annual head one

@OliveRanch I hope you get answers soon & wish you good health as I remember your thread