ITS NOT ANXIETY!!!!

[cassiefromlondon]

I'm going to write all the symptoms I've been suffering with daily for over a year now. I've had bloods done about three months ago and I was low on folic acid which I'm now nearly finished a course of 5mg tabs a day. I had an echocardiogram last December which came back fine. I can't cope with this anymore. It's actually scaring me now. I'm calling the doctor again tomorrow and will probably be fobbed off again. I just want to feel normal again. I'm trying to look after my severely autistic son full time and I'm finding it hard because I feel so unwell

Completely spaced out.. not with it at all
Face keeps going numb
Throbbing head
Blurred vision/even with glasses
Thumping heart beat
Feeling faint
Feeling very weak
Inside body tremors
Slurring my speech
Dribbling when trying to talk.
No energy at all
Extreme tiredness
Can hear whooshing in my ears
Dizziness severe
Can’t focus/memory loss
Breathless
Legs giving way (no strength)
No Appetite recently
Stomach cramps/dioraha
NOT ANXIETY!!!!!!!!!

& OP by exact symptoms I really do mean every single thing mentioned on your list - I could have written it myself. I'm also a carer for my autistic child with complex needs and have struggled with huge anxiety/stress etc. For me even the most extreme anxiety/stress/PTSD didn't cause all that and it's so horrible to have such real symptoms blamed on your mental health when you absolutely know something more is going on.

I just wanted to say, OP, it's not your fault. You are trying your best but it's bloody hard looking after an autistic child on your own, and even harder when you're so unwell.

I also forgot to say earlier, that my calcium was low and GP thought that might have been contributing to my weird numb spots on my legs and feet. I think calcium is needed for your nerves to function properly so might be worth getting your calcium levels checked too.

I hope you can see another, much better and more helpful GP next time (soon).

@PictureOfTheSea I have an awful lot of those- !!

@PictureOfTheSea and as you say my anxiety was caused by the fact I suddenly had all these odd sensations and issues - I had those come in before I had any anxiety!!

'I just want to feel better because I'm struggling to give my child the care he needs while I feel so unwell'

You need a break op and to get out of the house. What support do you have and if you don't have any please see your hcp/hv/social worker and ask for support.

There is of course a chance you have some underlying rare medical condition as yet undiagnosed but I would guess it is chronic stress and chronic sleep deprivation. Both can manifest in physical problems.

Having read your previous post, how you described it was just like how mine started, a week after the covid vaccine. For me it was tingles then also areas of numbness in hands/feet/face followed by confusion/brain fog/memory issues, difficulty speaking/putting sentences together, getting spaced out dizzy/feeling like I'm falling, internal tremors/jerky movements/leg not working right etc etc. I'm very pro vaccine BTW, I wonder if it was having a vaccine (any vaccine) on top of the stress of living through the pandemic. I've never had an issue with any other vaccine. My neurologist is treating quite a few people in the same situation and was asking me to feedback to him how it affected me when I got the boosters etc. It's well known in neurology that stress and anxiety (from fear of all the new and quite terrifying symptoms) made worse by slow diagnosis can excascerbate the condition so its a bit of a vicious circle. If you have other autoimmune issues (thyroid problems etc) or past trauma you are more likely to get it.

Apologies if cross posting as only read OP posts, but have you been for an eye test?

I'm an optician and reading your OP my first thought was I want to know what your optic discs look like, and check peripheral vision. Any high st practice can do this for you btw.

If anything it will help to rule out some diagnoses

@Crikeyalmighty sorry you're going through it too. Sounds like you should ask for a neurology referral and ask about FND x

@PictureOfTheSea I’ve got similar thoughts about my vaccine reaction - that I had a multitude of underlying ‘risk factors’ and the vaccine was the final ‘trigger’. I’m less pro-vaccine than I used to be, but like you I’d never had a problem with any vaccine before.

OP it sounds like you are doing your best for your child - I understand the mum guilt well.

I don’t FND as a diagnosis.

FND was hysteria and despite the rebranding as a ‘software issue’ it’s still basically saying ‘it’s psychological’.

I have ME which is often misdiagnosed as FND because there is nothing wrong with your tests. But it’s an easy diagnosis to use when doctors dint have a clue. Abd it gets them off the hook t9 find what’s going on.

Also I developed similar symptoms after the Covid vax. So have many other people but it’s rarely acknowledged by medics who know fuck all about Covid. And often haven’t done their homework either.

So yes I’d strongly encourage anyone who has an FND diagnosis to carry on looking for answers. Rather than just accept it.
Not the least because 1- it could open the door to treatment (POTS can be treated quite well) and 2- because you might well make yourself worse by not getting the appropriate diagnosis (eg FND when it’s actually ME)

Totally agree. Lots of myasthenics are initially fobbed off with FND

OP you take statins, are a long term cannabis user and are under enormous stress.
Side effects of statins and long term cannabis use can explain a lot of your symptoms, with the rest perhaps being caused by the enormous stress you are under. I would check your dribbling with the dentist as well. This can be caused by teeth issues.

It's well known in neurology that stress and anxiety (from fear of all the new and quite terrifying symptoms) made worse by slow diagnosis can excascerbate the condition so its a bit of a vicious circle.

Thats true for most illnesses and doesn’t mean one has FND.
Eg it’s true for pain, MS, Herat attacks etc….

Stress has a huge impact on the body.
But a condition like heart attack being started by stress doesn’t mean it’s psychological or FND.

Hear me out, but if you have an autistic son, are you also autistic yourself?

I ask because autistic women are more likely to suffer with a variety of health problems including auto-immune disorders, GI issues, allergies, as well as FND, fibromyalgia, ME etc.

Neurodivergent people, especially women seem to be just wired up more sensitively all round. Might be an important part of the puzzle.

Well yes - thats my point? Stress has a huge impact on health conditions. But when your condition is being blamed on stress and anxiety alone its easy to be fobbed off with mental health issues (not downplaying those at all by the way) when there's more to it than that.

Exactly this.

My symptoms have a very real and physical cause (a neuromuscular junction disorder). However, they can flare as a result of a number of factors, illness, hormones, stress.

Just because stress can exacerbate the symptoms it doesn't mean stress causes the condition. In my case it is genetic.

It's lazy medicine to dismiss something as psychological just because you couldn't immediately pinpoint the cause.

And not lazy but harmful and dangerous.

Have you been assessed by a neurologist for Functional neurological Disorder?

Are you a neurologist? Because I prefer to take advice and diagnosis from my senior consultant neurologist who is involved in research in this area. Neurology are now moving to a positive diagnosis of FND rather than it being a catch all for unexplained symptoms. It is now known that there are FND brain changes that are visible on scans, with new research furthering the knowledge of physiological changes and understanding of the condition. Yes it is not a well understood condition, but the label of "hysteria" or "conversion disorder" are horribly outdated and unhelpful to those of us who struggle with it. The treatments include specialist physiotherapy.

And yes I 100% agree no one should be looking at FND as a diagnosis until they have ruled out all other serious potential causes, but over the last 4 years I have had my brain scanned multiple times, had MS and tumours etc ruled out, been checked for POTS, and other cardiological issues, had every blood test for B12, thyroid, vit D etc etc checked and rechecked. It doesn't make my brain work any better or my legs behave but following the guidance and treatment options for FND has helped with this awful invisible condition.

@PictureOfTheSea it was an awful and very frightening feeling at the time- I also developed really quickly a sensitivity to bright sunlight and noise- I remember going into a cafe and the sound of school children laughing and a dog barking was too much to bear- really really weird- it was as if my whole neuro system was totally out of kilter. First time I had it happen was in Berlin and I suddenly had buzzing round my mouth and my eyes went odd - I honestly thought I was having a stroke - but 5 minutes later all ok - at one point I honestly thought I wouldn't make another month. Took about 3 months to initially calm down and for everything to become more intermittent. 2 years on I am calmer as I'm still here and everything still very intermittent . I'm not 100% more like85% but can function normally

Your folate level is low but your B12 level is normal. This is tricky because there is no genuine “normal” range for these two. You can have low serum folate levels (deficiency) and have neurological symptoms. You would need a test for plasma homocysteine to determine if your folate levels are causing this, but that can only be done at certain labs/hospitals. Apart from that, your bloods are all okay. Your Ferritin could possibly be a little higher but if you are still menstruating it’s not unusual.
You could try taking a multivitamin with iron, B12 and folate. A pregnancy one would be perfect - even if not pregnant, but I think the tests would be a better thing to start with first.

Yes I get all of that, it's like unbearable total sensory overload and you suddenly can't tune out things that you never even noticed before. I wear loop earplugs to reduce it but still really struggle with busy environments. I also had an ambulance sent by 111 as at one point they thought I was having a stroke (my whole left side stopped working, I was slurring my speech and couldn't see properly) But A&E couldn't find anything wrong (although at least they contacted neurology which helped me get more answers and some reassurance). A few years in I'm functioning but not fully, maybe 65% (can't work) & I still have episodes - it gets much worse whenever I'm tired or stressed.

Vitamin d levels
I was trending doctor 2 years no outcome .
I’ve started treating myself with vitamin d then moved to the injections it’s been life changing .
Also gave me hrt I’ve no menopause symptoms though .

Do some research on extreme vitamin d deficiency’s.
Start with a tablet daily , as we should all take supplements so won’t do any harm.

What about something related to the brain .
someone I know was diagnosed with epilepsy and it was like tremors and other symptoms but no fitting .

I take it there's no chance you could be suffering from mini strokes? My aunt had a lot if these symptoms and turned out she'd had possibly up to 8 mini strokes in her sleep over the course of 2 years.

The op took vit D, infact her levels were very high so she had to reduce.