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.

I was sure something was wrong and it was, though nothing like what I expected. You have done the right thing getting seen.

Hopefully it won't be anything of concern (and it's unlikely to be everything your mind is bringing in). But if it is, better to be diagnosed and treated.

Recommend light tv and not googling until you know where you are.

Thank you. I hope you're OK now.

Getting there slowly, thanks.

I'm also just so frustrated with my GP. I saw them twice and both times they sent me away with painkillers. I wasn't even in pain and was complaining of weakness progressing from my arm to my leg as well as pins and needles and nerve sensations. The neurologist who I had to pay privately for was flabbergasted that they didn't send me to see a neurologist, especially considering my GP found that I had a reduced reflex on the side affected.

Anyone else about? (Sorry am just so anxious and not sure how I'm going to manage until my scan!)

Oh op you poor thing.
Do you have a time frame for your MRI? If a long wait can you afford private ?
Having had a cancer diagnosis, the one piece of advice I can give you is that worrying won't affect the outcome, but it can steal precious time and happiness from you. Console yourself that for most people, there's a benign explaination.
If there is anything you're particularly worried about based on your symptoms, ask your doctor how they know conclusively that it's not XYZ. It will either reassure you, or give them a kick up the arse to look into it properly.
Get them to explain it to you.

Also... Do you have any previous health anxiety/ general anxiety? If you're struggling to cope you may need to speak to a (different) gp for help.

Thank you. Generally not a very anxious person. Haven't been unwell for a very long time. I am a lone parent to a 6yo and I suspect this is why I am spiralling. Can't afford a private mri, and saw the neurologist privately so can't speak to him again until he's booked me in to see him on the NHS which will take a few weeks.

I would pay privately for a vitamin D test if that hasn't been run.

Potentially start high dose D3 + K2 and magnesium as cofactors to support autoimmune/neurological conditions.

Vit D is fine. So is B12 and thyroid.

I was told 20 years by my neurologist when ruling out MS and dealing with rheumatoid arthritis I should aim for a vitamin D level between 150-200 way beyond NHS normal guidelines.

This is a good facebook group for support and information.

My thyroid was also NHS 'normal' but I greatly improved when that was corrected.

It's horribly worrying, I found distraction was the only way forward.

Yeah I had terrible persistent double vision and headaches. Doctors thought I might either have a brain tumour or myasthenia gravis. After a number of months and tests it was just unexplained squint and no doctors ever made head or tail or it. I had eye correction surgery which helped a bit 50% I’d say but it’s just something I still live with (double vision) but at least I don’t have a brain tumour.

so it’s not always something severe and fatal

I do have a neurological condition and I have learnt that worrying/catastrophising does not change any diagnosis but stress can definitely make things worse. Please try to distract yourself or use some deep breathing or grounding techniques to bring yourself down. Sorry you are going through this, I hope you get your MRI appointment soon.

Have you compared them to the lab ranges though? Not your GP, you?

Are you able to put your result and lab levels here, for ferritin as well?

so sorry to hear this. My best advice is to not Google and to be kind to yourself so light TV, easy favourite foods and so on. Tell yourself that you don’t know what is wrong but it’s normal to fear the worst. All your reactions are to be expected. But you have no facts. And when you do have facts, you will then deal with those.
For what it’s worth a friend had arm weakness and it was a benign tumour which was quickly taken out and sorted.
you have no facts yet so keep telling yourself that. It might be the worst but it might not.
and once you have a diagnosis, make sure you complain to the GP surgery

What are the results if you don’t mind me asking?

No but conversely I went to the dr thinking I had a trapped nerve and it turned out I had MS. That was 7 years ago and after having some treatment I have no symptoms or issues arising from it at all.

I really want to avoid trying to get medical advice now that I'm under the care of a neurologist but do appreciate people trying to help. Just need to manage my anxiety.

I was convinced I had a brain tumour or epilepsy. I kept having these weird episodes where I would suddenly feel lightheaded, clammy and disassociated from reality, followed by this enormous sense of doom, as though something horrendous was about to happen. Then I would faint. Around this time I also developed phantosmia, also known as olfactory hallucinations, which is where you smell things that aren't there. I constantly smelt burnt toast or baking smells, or - hideously - cat piss. It was there 24/7. I made the mistake of googling my symptoms and brain tumour was the first thing that came up. I was fobbed off by the doctor at first but when I mentioned the smell thing I was sent for an MRI and an EEG (brain scan). In the intervening weeks before the scan I was pretty much planning my funeral. My health anxiety (triggered by this issue, never had it before) was out of control.

This was five years ago. The scans showed nothing. I was in my late 40s at the time, and a little while later I went on HRT for a multitude of issues. Everything cleared up, the lightheadedness, the fainting, the weird little episodes. Doc said it was all tied up in perimenopause. I do still have the smell thing though, that's never gone away and is, frankly, bloody awful. But I've learned to live with it.

Just telling you this as like you, I was utterly convinced - with a true gut feeling - that something was seriously amiss. But I was wrong. I hope you are too, OP. It's such a terrible, all-consuming feeling while you're waiting to find out.

A doctor "normal" does not necessarily mean it is OK, your levels can be right at the bottom of the range, and you would have symptoms. Yes, I speak from (bitter) experience, and I was also seeing a neurologist.

Thyroid disease is also something which is often not treated correctly, and you will often be told that your result is "normal". It definitely does not mean you are well.

Please make sure you actually do get your results for yourself.

Have you ever suffered with migraines OP. I only say this as I learnt there is such a thing as hemiplegic migraines, they can cause all the symptoms of a stroke but the main difference it it doesn't happen at once so the facial drop, one sided weakness and slurred speech. I am someone who has these and it literally looks like I am a stroke patient and can even confuse paramedics in it's appearance. Another advocating for until you know you don't know and as a PP said stress will increase the symptoms.

Has vitamin b12 deficiency been looked into?

Same here! TSH was raised but within scope of NHS limits. My fertility clinic prescribed levothyroxine privately - I lost a stone without changing anything else, had so much more energy and my insomnia improved loads! My private consultant said that NHS limits are basically “isn’t going to kill you.” 😩

Just a big hug! I, too, am in the middle of the diagnostic muddle and it’s stressful.