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Just starting on the long diagnosis road

Hi everyone,

I’ve been reading through some of the threads in this forum and you all seem like a lovely helpful bunch, so I’ve taken the plunge and started a thread of my own.

I’m currently in that awful place you call ‘limbo land’ after an eventful few weeks in my life. I would have thought myself a fairly healthy (but fond of wine and pizza), not easily taken ill person before now. Boy have my eyes been opened! Sorry for the mega long post…

I started having pains in my wrists back in August 2018 and I went to my GP about it - she suggested carpal tunnel syndrome and referred me for nerve conduction tests. (I still haven’t had these tests by the way, good old NHS waiting lists).

In the meantime, I was attending my osteopath once a month, as I’ve had lower back issues for about 10 years. She has reduced the back pain/symptoms significantly for me (I’d say about 80%) so I mentioned the wrist pain to her. She had a poke and prod around and said she wasn’t sure about carpal tunnel but we’d wait on the tests to confirm or rule out. Hmm, odd I thought, that she didn’t think it was carpal tunnel.

But over the next 2-3 months the wrist pain changed to tightness and pain in my forearms (towards the elbows). Then sometimes I had shooting pains up into my shoulders and pins and needles in my left hand that lasted all day. I knew this wasn’t carpal tunnel syndrome any more but I was hoping it was repetitive strain or similar (I sit at a computer all day at work).

In January I noticed I was blinking a lot as if trying to refocus all the time. I went to my optician and all was fine, nearly 20/20 vision. Around the same time I noticed my balance was a bit ‘off’ - not seriously, but enough to make me be a bit more careful on stairs or escalators. I was in the middle of moving house at the time and I put it all down to stress/anxiety/deyhdration/too much caffeine. Late January I caught a nasty cold/virus thing that floored me for a few days. Cough, sweats and chills, fever and mega fatigue. A few others in work had caught it too, we all seemed to recover fully after a couple of weeks though.

Then in mid-February I had a bad fall. Face planted directly on to my nose onto a pavement. Luckily it happened right outside my osteopath’s office on my way in to an appointment, ironically where I was going to tell her I thought my balance had got worse! I lost a lot of blood (my nose was gushing the stuff) and I was shaking uncontrollably. She stopped the bleeding and got me calmed down to where I drove home and put my blood soaked clothes in the washing machine, took paracetamol and went to bed. The next morning my hand was sore from breaking my fall so I went to A&E on the way to work (oh yes aren’t I a brave soldier!). They x-rayed my hand and sent me home with a splint just in case it was fractured and didn’t show up on the x-ray, with a further one to be done after 2 weeks (turns out not fractured, phew!).

After that, it’s now been what feels like months, rather than weeks, of trips to A&E, GPs and an ENT specialist. 2nd neuro exam at A&E all good again, diagnosed vestibular neuritis with nystagmus. Told to go home and it’ll go away but might take a few weeks. My balance has been terrible, but I don’t have the ‘room swimming’ thing that vertigo would present. ENT guy says this isn’t the typical symptoms, go see a neurologist as soon as possible. GP says same. They both make me think ‘oh [removed by moderator]’. No blood tests done so far for vitamin or mineral deficiencies or anything else (these are happening tomorrow morning - and only because I spouted Google at the GP!). GP says I need an MRI urgently, so I’m going to pay for one privately. First private appointment I can get for a neurology consultant is 8th May - if I went NHS it’d be 2 years! (I live in Northern Ireland and the Michael Watt scandal has hit neurology services hard).

I have to admit that I went a bit mad on Dr Google, which I thought would make me feel more in control, as I’m an information person. I wasn’t convinced about the VN diagnosis because it didn’t explain the facial/tongue numbness. My osteopath had suggested autoimmune (specifically MS) when I mentioned my eyes were bothering me. Probably not helpful of her but I did press her as to why she’d asked me about any vision changes. The first GP I saw also said ‘neurological’ and ‘cranial nerve involvement’, 2nd GP asked about tingling (yes in my right ankle, feeling of coldness in lower legs) and mentioned ‘possible demyelination’. And of course the more I read online the more I am finding other symptoms (bladder - not incontinence but a little leakage now and again, and inability to completely empty it sometimes, running to the loo a lot).

I’ve been off work for over 2 weeks now and am signed off for another 2. I’ve never had a sick line in my life before now and I’ll be 40 in May, worked full time since I was 18! I can’t drive with the double vision so life has suddenly become more limited (and more expensive getting taxis everywhere). I’ve just moved into a new house, but my balance is so bad I can’t do any decorating or building of flat pack furniture. My anxiety levels are high, and as much as I try not to tail spin into ‘what if I can’t drive again/work again/drink again/go out again’ it’s hard to keep at bay. This is all so unlike me, I remember a good friend once telling me I was ‘stoic’. Now I just feel fragile.

Reading the supportive threads on here has helped me tonight (I had 2nd GP appointment this morning, where he completely dismissed the VN diagnosis and made me think ‘oh [removed by moderator]’ all over again). It’s also helped to read the stories from people diagnosed with MS who are still working and going out and having lives. I think you all, without even knowing it, have helped to reduce my anxiety just a little by sharing.

I’m so frustrated by the health system. Acute care like A&E just want a quick fix and to send you home. GPs and ENT who aren’t specialised scare the crap out of you talking about demyelination and autoimmune, and want to hand you off to someone who knows better than them, but even going private that’ll take months. And in the meantime, here I am in my lovely new home, feeling trapped and scared and wondering when the heck I’ll be able to drive or go to work or not just be scared to walk without assistance for fear of falling again.

Again, my apologies for the mega long post… if you’ve made it this far without falling asleep!

Caroline x

Hello Caroline

I agree with you that listening to non specialists mention autoimmune disorders, demyelination, anything neurological in fact is worthless.

The problem is not just to get an MRI, but to have a full neurological examination and for a neurologist to read the MRI scan once you’ve had it.

My feeling would be get a private neurology appointment, have the talk about your history, have a neurological exam and see what s/he thinks. If s/he doesn’t think it’s neurological, then they won’t recommend that you have an expensive pointless MRI. But if s/he does think it’s neurological, s/he will recommend the tests.

If it does turn out to be MS (or some other disorder), then you can swap back to the NHS.

Obviously have the blood tests first, Vitamins B12 and D can both present a bit like MS.

And don’t be too sold on the idea of MS. There are many other disorders and diseases which share symptoms with MS.

Lastly, try to stay away from Dr Google. If you want information about MS, use this site or the MS Trust. If you want information about anything else, try the NHS (or specialised sites like this one).

Best of luck.

Sue

Hi Sue,

Thanks for your reply. I can’t get a private neurologist appointment until 8th May, though I am going to keep calling them every week to see if they get any cancellations. It’s so frustrating that so far everyone has told me I need an MRI, like it’s the only test available, yet hadn’t checked for any other conditions first like vitamin deficiencies. I had my blood tests done this morning, hopefully they should be back early next week and that will at least rule in or out other things.

In the meantime I’m staying away from Dr Google and trying to relax with some comedy shows, it helps keep the anxiety levels down a bit!

Thanks,

Caroline x