Neurologist appointment tomorrow and I'm scared

[SageYourResoluteOracle]

I've been having multiple symptoms for around 8 weeks now - initially, in isolation but now all simultaneously. They all point toward MS.

I'm struggling to sleep even though I'm exhausted and I just feel so scared. I have no headspace whatsoever and have just started working full time for the first time in 7 years. And (one of my symptoms) I need to pee constantly and have developed tinnitus too! (Another symptom) so I'm feeling really uncomfortable with this and the crawling skin, pins and needles, eye twitching... the list goes on!

DH and I have had exactly 10 years of utter crap to deal with and it's just been relentless. Anyone who knows me IRL will realise who I am but I don't care as I've shared this shovel
of shit with everyone anyway. In no particular order we’ve dealt with: infertility, job loss, debt, his and hers anti depressants, difficult pregnancy (as in they were going to terminate at 32 weeks on medical grounds), tiny baby in special care, having to sell property to sort other problems, being turned down to adopt (luckily seeing as we're now really not ideal candidates; the initial reason though was that I was the main earner...) DH having sepsis 3 times, DD having potential dxypraxia and confirmed premature adrenarche and we're stuck in rented accommodation as, well, it's complicated.

I'm sad, scared, exhausted and feel uncomfortable and just feel that everything is hopeless.

DH and I haven't had sex for 3 months now either. We're both knackered and he's not too well with a persistent cough as a throwback from all his illness last year but we're forced to sleep separately most nights due to it and the fact that I just can't bear the bed being moved or any noise.

The good thing is that we have really lovely friends and lots of local support, invitations to parties etc And our DD is AWESOME. Great company and fun to be around for the most part.

But mostly everything else feels fairly shit right now and I just don't have anything more to give.

And, did I mention? I'm scared about what the hospital appointment tomorrow may bring...and it's now almost 1am and I'm still awake. I've to be up at 6:30 and have to cram tonnes of work in at the office in the morning before leaving for the hospital. I cannot shut out the chatter, the bloody ringing in my ears and DH's coughing from downstairs. Arggghhhh!!!!!

Sorry. This is uncharacteristic for me to be like this but I honestly feel broken and just need a handhold really

I had no idea that low vitamin D could be part of the problem and cause such awful symptoms!

Would that explain the constant need to pee (I've had glucose etc done and it's not diabetes), the tinnitus and the numbness and tingling though?

See what symptoms on NHS direct, certainly chronic bone pain is one, as is bone wasting, muscle problems, depression, fatigue, back pain, lots is issues, including repeat infections, poor wound healing. Look them up, I have no idea about frequent peeing. Do you drink lots? Hope its not a stoopid Q?! Do you pee a lot of volume or small amounts, lots, as that could be stress incontinence or something where your bladder is oversensitive, or something completely different!
But vit d top up as you are deficient should feel a load better!!

Get out in the sun wherever its gone and walk a lot, once vit d sorted, run too. Do some regular exercise, if you don't currently. Our bodies are designed to work they don't cope well without. Deficiency can also cause high blood pressure and that leads to heart disease, so its really important to get your level sorted soon as.

Maybe diabetes insipidus would explain the need to pee (note there is no problem with blood sugar with this form)? Also might be worth checking for hypopituitarism as you already have POF?

I did have a look for one of the threads about Vit D in general health on here. Can't find one atm (on phone) but they exist. I did find something about kidney function being affected by deficiency via Google.

I had chronically severely deficient vitamin D - I'd no idea how much it must have been affecting me until I managed to get it up to merely deficient.

It was somewhat complicated by the fact that I had also developed an auto-immune arthritis but that was more manageable once the vitamin D hit deficiency level.

Best wishes for an outcome and diagnosis with a good treatment plan that manages your symptoms well.

Very severe vitamin D deficiency can be confused with metastatic bone disease or osteomalacia (akin to adult rickets). It can have wide-ranging and severe symptoms until corrected.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2427091/

so pleased to hear you had a positive ( as can be) experience OP, the clinician being kind and interested makes all the difference. I can recommend getting a vitamin D oral spray rather than the tablets as the absorption is (allegedly) quicker- they're available on amazon or in the likes of holland and barrett. Make sure to have your GP repeat the blood tests in a few months time to check the levels.

How did you get on with further tests and MRI?

I'm another one with MS op, diagnosed 20 years ago and never been prescribed any drugs. People have no idea unless i choose to tell them, which I don't tend to. I'm aware I'm very unusual/lucky but an MS diagnosis doesn't have to be the end if the world. How are you? How did you get on? I'm happy to answer any questions if I can

And low vit D is very common in MS people, I've been low several times.

Hey all. I'd completely forgotten about this thread... sorry!

A has happened since December. The MRI was fine and while I had to wait 6 weeks for the results, it was clear. I felt 'yay' for a couple of days but then descended into a misery pit... I was still feeling awful: in bed most weekends, I'd been at one 40th and only managed to dance alternate songs, missed another 40th, became more and more stressed and agitated and, frankly with the panic attacks I'd started to have, felt a bit like a psychopathic sloth. It was awful just not knowing what was wrong and needing an 'answer'. Panicky but exhausting and I just felt terribly overwhelmed with it all, keeping going but worrying about if/when I wouldn't be able to keep going any longer. In February I had a nervous breakdown. Thankfully my DH, family and friends have been hugely supportive and things are infinitely different compared with how they were just two months ago. I think it was just the sheer panic that this is my life and it's never going to get better. But it's not the end of the world and I've had some sense of having energy on and off for a few weeks now. Now that work know the true extent to which this mystery illness has been affecting me, they've been much more understanding.

I definitely think that lack of vitamin d has been partly to blame and I've also got glasses for the first time since I was around 8 so both those things have helped. Gynaecologist, ENT, Rheumatology and neurology appointments all booked in for the next couple of months. My GP feels it's pointing towards ME/CFS. But who knows 🤷‍♀️ I'm definitely a bit better than I was but still not 'right'!

Good luck.