Convinced I have something severely wrong with me

[Raffaelli]

Have posted about this before, last night, before I saw a neurologist. Progressive right sided weakness, shakiness, odd sensations. Leg is heavy. Arm feels odd.

Neurological exam was normal apart from I couldn't lift my leg against force.

Neurologist is getting me in for an MRI as soon as space is available. Said he is concerned about MS or something going on in my cervical spine.

I have managed to convince myself I have a brain tumor or something that is going to be life limiting/ending. I do not suffer with health anxiety and rarely go to the GP. Out of nowhere I am spiralling. I just have a gut feeling.

Bloods taken for vitamin deficiency and thyroid, all normal.

Has anyone ever been convinced there's something seriously amiss and been wrong? Sorry for posting in AIBU, I'm just struggling and don't get much traffic on the health boards.

In the kindest way possible trusting a neurologist implicitly is a big mistake.

As others have said look at your test results in greater detail.

Do the research and take back some control.

My ds was recently diagnosed with Guillane Barre Syndrome and I just knew there was something seriously wrong. He had a cough then developed weakness in his hands and feet which was worse on his right side. He went from being fit and well to not being able to walk and use his hands. The first hospital he went to didn’t spot it they said it was flu, it was only after we brought him home and took him to our hospital that he was diagnosed. He was in hospital having treatment for 10 days and he’s now home recovering. He won’t be going back to University for a while.
Really hope you get your mri scan soon and you get a diagnosis.

Long-time reader of posts but think this is my first time posting...
Over four years ago, following 111 guidance, I went to A&E with right-sided weakness and within 24 hrs (during which time I'd had an MRI brain scan with contrast) I had been diagnosed with MS. I had also been absolutely terrified it was a brain tumour... Think I'd had MS a fair while, but asymptomatically (until it wasn't!).
I know you're looking for posters to reassure you of times they've been wrong with their health fears, but I'm commenting to hopefully make you feel better that if it is MS, it is a diagnosis to which you can adapt. It's good you have a follow-on neurologist appt but I hope you are able to secure an MRI very soon because I'm sure once you start to get some answers you will start to feel better. Incidentally I've spent the bulk of today in hospital having my biannual MS treatment (infusion) - that's how I manage mine, alongside low stress (hah!), healthy diet, quality sleep where possible with two small kids and plenty of Vit D. Anyway, just wanted to say that if it is MS, you will adjust and things will be fine. Sending you a hug xx

If you have any kind of space occupying lesion in your brain (ie benign or otherwise tumour) it will most likely present with optic disc swelling. So have an eye exam.
Otherwise, it’s likely to be an iron deficiency, Vitamin B12 or a disc bulge in an annoying area in your spine.

My levels are fine. I've been over this with my dad who is a GP and said well within healthy range. I take vit d as I'm black so prone to it beinb low and it has been low in the past and it is currently 57. B12 is 603. Thyroid 2.2. I'm not just trusting him, but I am trusting him to rule out some of the big neuro stuff that I'm worried about.

Thanks for posting. I have two people in my family with Ms. One with no symptoms and no relapses since their first symptoms years ago. One in a wheelchair (but not until their 70s) and a wonderful life then and now. I really appreciate you posting and glad you're doing well.

Sorry to hear about your DS. I remember learning about this at uni. Quite rare isn't it! Wishing you all the best and also to your DS.

Agree with this. I also have a neurological condition and neurological symptoms can be so scary and weird it can raise all of our body's alarm systems even if there is nothing dangerous going on. I've also sat in a GP's office convinced my ankle and wrist bones were growing way too big...spoiler alert, they weren't.
That's not to say there's nothing wrong with you but sometimes our brains are capable of making everything seem a hell of a lot worse. Try to stay calm OP.

I asked him explicitly if there were any 'bigger' things he was worried about. Probably an irrational question but I'm glad he didn't lie to me. The weakness in my leg is severe, it stopped me from walking when I was in the cold, my leg wouldn't move. MS because i have a family history. Cervical spine issue he said could be a bulging disc so not exactly an emergency but wouldn't be fun either.

I was absolutely convinced I had bowel cancer. For months. It wasn't easy at all, and distracting myself was the only way I could stop thinking about it for a few minutes.
In the end, I was completely clear. But it had been a very scary time.
Keep strong. Sending a hug.

Yes, it's awful. I think because I'm usually so healthy and have never suffered with health anxiety either means that it all feels very unusual, and I'm just hoping my gut is wrong.

57 is still low even for the NHS who give 75 as optimal.

I know I'm banging on about this but it really can be turn things round to supplement.

Best of luck with your MRI.

If it is MS don't panic. Many people do very well with MS these days as the treatments have really improved. Also if you are diagnosed look up the charity Overcoming Multiple Sclerosis. They have a really well researched lifestyle which is all based on proper medical studies which can be a massive help for living well with MS.

I hope you can be seen soon.

I had similar symptoms - weakness, heaviness, numbness, unexplained sensations - and convinced myself I had MS. The symptoms got worse by the day until there seemed to me no other possibility than serious illness. The doctor sent me for tests which all came back clear and with the relief of those results, all my symptoms disappeared. The doctor said it was excess adrenaline from stress wreaking havoc in my body. I hope it's something simple like that for you too.
Maybe try yoga or anything that regulates your breathing, wishing you well

I don't think a vitamin D level of 57 is going to cause hemiparesis so severe I couldn't walk properly in the cold. It's been as low as 16 before and I've brought it up. It is probably still rising now I take vitamin D supplements.

Hi, I saw a private neurologist and MRI (and was suspected of MS) and as it showed lesions I was transferred to the NHS for diagnosis. My experience was very positive, once I was in the system it was literally days between appointments, scans, scan feedback, diagnosis and a couple months later I started treatment (had to have tests / medical review board etc in the interim) . I am not going to diagnose you, but hopefully I can reassure you that once you’re in the system the level of care is usually very good and quick - I was diagnosed late 2021. I wish you all the best x

I do think it's wild that if you've got £200 odd quid kicking about you can see someone privately and essentially skip the queue as they just refer to themselves on the NHS.

I'm glad you had a good experience.

How long do they think until you have an MRI? It is an awful feeling having to wait for scans or results so all you can do is try and keep calm which I know is not easy.
It’s good that your neurologist has been able to tell you what it may be and it sounds like he/she doesn’t think it’s a brain tumour as you are worried it might be ?
if it’s is ms there are good treatments to keep it on hold, I have worked in a neuro setting and new and effective treatments have come out in recent years. All the best to you.

And just to flag that lots of people live a good life with Myasthenia Gravis too (although I am glad it turned out not to be that for you). The websites can be quite gloomy and it fluctuates but on good days noone would really realise I am ill

My waits in the NHS were minimal tbh. Like you I went privately to begin with but honestly I wished I hadn't as actually the NHS fast tracked my tests etc anyway. And the care has been great in the NHS, I have a specialist nurse who always rings me swiftly if I leave a message and can liaise with the neurologist, and when I have needed to see them urgently they have magicked up appointments.

I wish you all the best, I think it's human to worry about worst case scenarios but remember it could be nothing or something perfectly liveable with too.

Thank you. He said 2-4 weeks. He has referred me to himself. When I asked GP about it they said I might be waiting up to a year.

I'm sorry you feel so anxious, OP.

Neurological disorders can be extremely worrying; I have the misfortune to know as I've been living with a medication induced neurological involuntary movement disorder called tardive dyskinesia for nearly a decade now. This happened after I had a head injury and post concussion syndrome which was absolutely horrendous to recover from and gave me a breakdown (hence the off label antipsychotic prescribed for severe insomnia and anxiety).

Anyway,.... my point being, I'd definitely advise being your own advocate, especially when it comes to knowing your body and your symptoms. I saw 5 different neurologists before one confirmed that I had my movement disorder (that I'd self diagnosed), and equally, I saw the GP multiple times before and out of hours A&E doctor told me that I had post concussion syndrome.

However, after saying all this, I think it's also wise to consider the role and impact that hormones can equally have on the brain and CNS, as I know my neurological symptoms certainly become worse with my hormonal fluctuations I'm getting in perimenopause. I didn't realise how intricately linked neurotransmitters like dopamine were to oestrogen, and how much my lower oestrogen is affecting my movement disorder.

I'm sending you a big hug as I know how hard it is living with neurological symptoms. You will be ok, I know you will ❤️

Sorry you're having such a tough time OP.

I leant many things during breast cancer, and probably the biggest lesson came at the outset - until a doctor tells you you have a brain tumour/cancer/MS/whatever illness it is, you probably don't. The odds of it being nothing are surprisingly in your favour. Don't waste this time cursing your GP for failing to act, don't waste your time with Dr Google or other online stuff, just look after yourself, try not to think about it and most importantly, don't catastrophise. Use this time to be good to yourself and look after yourself. And should they find anything, then not only will a diagnosis be given, but a plan will be made. Save your energy for what's to come.

Wishing you well.

Your vit D is way too low