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!!!!!!!!!

Could be lots of things - including anxiety/stress response.

Sorry if this has been mentioned already, but do you have a carbon monoxide machine? Any mould in your house/flat? Though it could well be hidden...

Did you have the symptoms before you started Statin? I’d assume you’ve checked the side effects that some people can get? Hope you do get to the bottom of this. Someone suggested Coeliac disease - have you been checked for this?

Are you aware of services (usually aimed at older people) like the app Snug Safety, which will alert your emergency contacts if you don't check in on it each day?

With the low folate it could be megaloblastic anaemia.
Do you have any other conditions? IBS etc, on any medication?
You should push for a referral because the usual treatment for folic acid deficiency is folic acid tablets which you have been taking, if these haven't improved your symptoms you should be referred to a specialist to look for underlying conditions. Did they also check your vitamin B12?

I’ve referred myself to the long-covid clinic and had my first appointment last week. I don’t know if the symptoms are Covid related or not, but they say they see lots of patients with similar symptoms. I’m working on advocating for myself better: I’m taking the position that my symptoms are real and my feelings are valid regardless of what others think or whether or not I have a diagnosis. I’m pursuing healthcare at the moment because I don’t want to be sick if I don’t have to be, but if there isn’t anything obvious to be ‘fixed’ then I am going to have to accept the situation and cope with it as best I can……

Some of these are symptoms of classic migraine. They can also be brought on by chemicals in the atmosphere or used on your skin. You could look at products you use in the house and also the foods you eat e.g. red wine and oranges are both triggers for the migraine-like symptoms (slurred speech, blurred vision, headaches) and together are a perfect storm. The whooshing sounds like tinitus, which can be caused by high blood pressure? Hence bloods? An investigation for allergies might be worthwhile.

I had most of this start out the blue 2 years ago - a week after I had covid for the second time and 11 days after my 4th jab- the first things were a weird spacey feeling like I was going to feint, a burning forehead and top of nose, internal tremors and a buzzing finger, intermittent but a few times every day, headaches in back of head , buzzing around the mouth and a weak leg on one side plus pins and needles in feet multiple times a day- I honestly was frantic as convinced I had ALS or MS at best. It has all gradually improved over time but left me with arthritis in the neck ( could be coincidental as I'm 62) plus the occasional weak leg and sore eyes at times. I had all the blood tests going-plus chest cray and neck cat scan ( as I had a swollen looking thyroid area) - and saw a neurologist, all they could find was pre diabetic, vit D a bit low and blood pressure and cholesterol too high. My T4 is also a bit low at 10.1 but my TSH is normal - so they left that. The only thing I didn't have was an MRI, I personally think I've got either herniated discs or bulging discs in neck or spinal stenosis and pressing on nerves - am saving up to pay private. It could well be covid lovely done a number on you- I think totally busted my neuro system- equally being hypothyroid produces many of these symptoms as can very low B12

You mentioned whooshing in your ears. Is it definitely a whoosh and not ringing? Is it in both ears or just one? Is it in time with your heartbeat?

If so, it's called pulsatile tinnitus and can have various causes. I have this and the first couple of GPs I mentioned it to, thought I meant normal tinnitus (the high-pitched ringing) and fobbed me off for years. I saw a different GP who immediately referred me to ENT, who, in turn, referred me to Neurology. I have had scans and seem to have been lost down a black hole! But that's by the by. It can take a long time to get seen, especially by Neurology, but they may be very interested especially considering your other seemingly neurological symptoms (vision, dizziness, brain fog, etc).

Does the whooshing sound diminish or stop completely when you press on the side of your neck? If so, mention it as they don't always ask. The first ENT doctor I saw didn't ask but the 2nd one, the consultant, was very interested, and he checked and was able to hear it himself!

As others have said, there may be more than one thing going on.

You haven't mentioned how old you are but said that you thought you might be perimenopausal. I entered perimenopause in my late 30s and had many of the symptoms you described. Have you had your hormone levels checked? If you're over 45, they won't bother checking but they should check if you're under 45. The Evorel Sequi patches didn't suit me. They kept falling off and irritating my skin, and I don't think I was absorbing the medicine. I am on Oestrogel now with utrogestan tablets and that is much better but still hasn't fixed everything, and it has taken a long time (years) to change the dose (I need higher because I'm younger).

I am not a doctor but it looks like your bloods are within the normal ranges and usually slap bang in the middle, assuming the lab reference ranges are the ones in square brackets. Folate is the only one that seems off. Obviously there are other blood tests they can do, such as TSH that other posters have suggested.

It must be extremely hard looking after your son. Please do go back to your GP and tell them how you're feeling. You may need to book a double appointment so that you don't feel so rushed. Ask to see another GP if you don't feel they are helping you.

Anxiety can have profound physical symptoms and effects on the body, but I would be concerned that they haven't investigated your apparent neurological symptoms before reaching that conclusion. And, as others have said above, dealing with distressing symptoms for such a long time can cause anxiety in itself, but it doesn't mean there isn't another underlying cause.

Good luck x

Honestly you sound really anxious. I had the exact same experience as you, same symptoms. I kept going to the doctor and they’d ask me “do you feel anxious?” And I’d say no because I didn’t realise that’s what I was feeling. I was so anxious all of the time and for so long that it was just the normal feeling for me. Finally I realised that was what it was, I had some CBT and my life is infinitely better. I was so scared that I had a severe medical problem (I got tested for all sorts - leukaemia, diabetes etc.) that this actually made my anxiety worse.
Obviously there may be something else going on - what blood tests have you had? But you definitely sound anxious so this could be exacerbating symptoms even if it’s not the initial cause. You can self refer to your local mental health service. Continue with the medical investigations through your gp but you definitely sound like you need to talk to someone about your MH. X

POTS - my friend had very similar symptoms and it took about a year for the GP to get to the bottom of it. It can be brought on after having Covid. If I remember rightly she had a heart rate or blood pressure monitor on for 24hrs as she was worse when standing up/doing any strenuous.

Sorry to ask OP, but how much alcohol do you drink?
Just that the low folic acid and quite high VB12 could be a symptom of liver disease/damage

@cassiefromlondon
Absolutely agree with this! Please constantly contact your doctors surgery to chase them up because it doesn’t sound like you’re currently receiving the care you need. It’s awful, but I think you almost need to nag the surgery until they view you as a bit of a pain in the backside and then hopefully they might start taking you seriously. I definitely think you should see another doctor - ask for a ‘second opinion’.
If you’re trying all this and still not being treated properly, perhaps consider changing GP surgery, or contacting 111 (e.g. when you have a flare up of your most serious symptoms).
Good luck

It could be IIH? Have you had your eyes tested as often this is picked up when they check the pressure behind your eyes?

I absolutely agree with this. When I was suffering with stress and awful depression I had a GP tell me that being a mum to small children and working is hard and what I was feeling was normal and to remember to take a bit of time to myself. I was already on ADs at this point but then didn't feel like I could tell her I was feeling suicidal and was absolutely not coping with the depression as apparently everyone else was just getting on with it. I fell to an extremely low point after that as felt that no one was able to help me.

I had loads of those symptoms - it was peri menopause and the only thing that helped was hrt - maybe try it again …

I am not saying this to scare you I am saying this from a place of understand. I had many of the symptoms you describe but you should potentially try and get them to explore Neuroendocrine possibilities such as tumours that secrete additional adrenalin hormones into the body. This can cause, tremors, high BP, feeling unsteady, I had a tumour in my neck that caused woooshing in my ears etc. Again I want to stress this is rare but this was the cause of my issues.

they are called Paragangliomas or Pheochromocytoma's (Depending on location)

Could be the statins making you feel unwell.

Also, try taking methylfolate instead of folic acid. Folic acid is the synthetic version of folate, and if your body has any issues 'methylating' then taking folic acid won't be doing anything at all.

A friend developed these symptoms days after her Covid vaccine. She has POTS.

eta: Lost my quote. It was from a poster who's doctor trialed thyroid medication.

It didn't change anything for me, but my GP suggested trialing medication when I had borderline results, he said it was safe to do and more conclusive, as some people can be symptomatic in what is still considered the normal range.

Thyroid is definitely worth checking. Did the doctor check b12 and iron and vitamin D? Chronic fatigue ticks a lot of those boxes, long covid, something effecting peripheral neuropathy, there's probably a very long list. Have they checked if you've had glandular fever recently? That can trigger things like chronic fatigue. There's also less likely things like multiple sclerosis that might be a possibility. Unfortunately its a fairly wide list. Addison's or something else effecting adrenal function, other auto immune, I'd want ANA tested, full blood count, T3 and T4 as well as the more standard thyroid measures.

@Marmunia10667 That’s interesting. Many of my symptoms developed after my Covid vaccination. I don’t tend to mention it because of the whole ‘anti-vax’ thing. The POTS symptoms came on more slowly.

Things that help me OP and why I couldn't say are gluten free diet, lots of water, walking a lot, belly breathing and taking various vitamins ( I take B12 spray, vit D spray , a methylfolate tablet 3 times a week , a good quality multi vit and a very low dose beta blocker daily . I'm also on statins but reduced to 2 a week ( checked and safe to do this if you are just on for moderately raised cholesterol not heart stuff etc) as I found daily statins def aggravated weak muscles in my case.

Thank you all so much for your replies and suggestions of what it may or may not be.
To answer some questions..
I don't drink alcohol at all, and haven't done so in just over two years.
I don't smoke or touch drugs. I suffered bad anxiety/panic disorder a few years ago, but this is definitely different.
My vitamin D levels were very high when I had my last set of bloods and was told to stop taking my 10.000ug daily dose straight away. That was 6 months ago.
I was buying them from the British supplement website because I hardly leave the house due to around the clock care for my child. I was getting no sunlight.
I just want to feel better because I'm struggling to give my child the care he needs while I feel so unwell.
Plus I'm getting the worst mum guilt in the whole world 😢
Thank you again ladies x

What’s your blood pressure like?

@cassiefromlondon I have been where you are with the EXACT same symptoms. I know no one can diagnose you through a forum and you need to get various things ruled out. But I was very, very scared, and went through all the tests/MRI's/CT scan etc (to check for MS etc, all clear) and was eventually diagnosed with Functional Neurological Disorder (FND) by a neurologist. Its common but VERY poorly understood including by GPs. It used to be thought to be psychological, as it doesn't show up on scans, but now they know it is a software problem with how the brain communicates with the nervous system and body. You need to really push for a neurology referral. Mine was triggered by the covid vaccine, but it can develop after illness/injury/high stress levels/trauma etc. (My neurologist told me that a significant proportion of cases will be caused by the vaccine but also by covid, and will account for a proportion of long covid cases.)

Incidentally I also have Graves Disease and have had both hyper & hypo thyroid issues but it didn't feel anything like this bad until my bloods were way off the normal range and that would have been picked up on. FND for me is on another level symptom wise. It is very invisible but very real.

This is a useful podcast https://www.bbc.co.uk/sounds/play/m00237pf?partner=uk.co.bbc&origin=share-mobile

Website neurosymptoms.org/en/

It might be something else of course but hope this might help you or other PP who had issues after the vaccine. Good luck OP