Seizures…..

[RoseFlowerDew]

Thank you everyone for your support over my previous post. It’s been really helpful….

As an update! After 18 months of seizures which have worsened I finally was able to see a GP last week. Even though I lose my balance for days after a seizure the GP thinks it’s endocrinology issue! Thankfully the hospital has said twice (haematology because of PA neuro stuff and chest for rheum. stuff) that I need to go to neurology so the request for that was put in last year but I am still waiting. No ideas what is causing my seizures but I was deeply shocked that a doctor would call it an endocrine issue given I pointed out several health issues already known to cause convulsions. I’m not entirely convinced my local surgery is using fully qualified staff. I am not sure how they can do that even unless it’s under the guise of GP training…..

Anyway, slightly off topic, I had my first major allergic reaction over Easter including a big red rash, tight chest and dizziness. I’ve never been majorly allergic before so I wondered does anyone know if Covid causes an increase in new allergies? I just recovered from it in March.

[Nackapan]

Goodness ask to be fast tracked to neurology. Covid continues to give people very different and bizarre aftermath.

So a possibility.

Keep detailed records .

Ask the member of staff their medical staff status.

Badges should be worn.

HCAs ard employed and czn be trained to take blood and give b12 injections.

Also nurse practitioner can consult and prescribe

Nurses do specialised courses ssy in diabetic care ect.

They shoukd refer you on if it's out of their remit.

Ask .

I discovered at a dermatology appointment when i asked if x biopsy was necessary that I wasn't actually being seen by the consultant.

As she woman j saw with a student pushed a button.

The consultang appeared and said a biopsy not needed and cancer highly unlikely.

The woman who saw me said only a consultant csn say that !!

No badges

When accompanying my daughtef I always checked who snc what position.

It should be made clear.

Another Scenario was a nurse going back snd forth to get advice from s doctor.

Much quicker if see by the doctor who could hear it first hand !

You've alot going on .

Push for that referral.

[charks]

I had a seizure which led to me finding out I had B12D. I stress the fact that it was me that discovered I had low B12. A&E and my GP were useless. My seizure was very frightening. I lost conciousness for over 30 minutes and when I regained conciousness I couldn't talk or move for ages. After 7 hours in A&E I was told it was just a faint and discharged. I still couldn't speak or walk properly but they couldn't care less. As you can tell I am still bitter about the way they treated me.

Anyway, I digress. To sum up things I discovered I had PA but could treat it with oral B12. Several months later my GP told me that my B12 levels were dangerous and to stop taking B12. A month later I had another seizure.

GPs are so ignorant about B12D. My seizures were 100% caused by low B12 levels. I didn't have them before and it is two years since my last one. There is a strong possibility yours are too. But good luck trying to get someone in the NHS to acknowledge it. They will try to find something (anything!!!!) else wrong with you rather than admit they could be caused by B12D.

I know this doesn't help you but I think you will have to treat yourself. You can't go on having seizures. Are you taking B12? If you are it obviously isn't enough. Take more B12 and see what happens. You can't overdose.

[Nackapan in reply to charks]

I went to a and e as thought thst was happening to me. I was very ill and unable to walk .

The initial triage nurse really listened.

After that it was just more trauma

Diagnosis

A panic attack apparently from recreational drugs

I can laugh about it now

I did get s brain CT scan though .

That was clear and reassured one doubt as I visited a friend weekly for 14m

She died of a brain tumour

[charks in reply to Nackapan]

A&E didn't bother to give me a brain scan. My GP had to arrange one for me three weeks later. Luckily it was clear.

[Nackapan in reply to charks]

I had a CT scan as I made great emphasis on my bad fall hitting my head in A and E.In was a nasty hit on the head.

Fslling over alot.

I had a brain MRI after ordered by G.p and bloods that finally included b12

[charks in reply to Nackapan]

When I went to A&E it was at the start of the first covid lockdown. I just wanted to get out and home to safety. It was only afterwards that I realised I should have had a CAT scan. So I had to go back and risk getting covid again.

[Narwhal10]

Hi RoseFlowerDew,

I am so sorry to read. I do hope you get help and answers soon. Seizures can be frightening, exhausting and cause injury. Like Nackapan said push for that referral as soon as and advocate for yourself or rope someone else in.

I can see you have a complex history. I don’t have answers, just wish you to get to the bottom of things and have appropriate tests.

Have you been tested for coeliac disease as well ? Am thinking about your allergic reaction, 70 % of the immune system is in the gut. Have you any idea what caused it, food, medicine, been out anywhere, thinking along the lines of tree pollen. I am aware that 19.8% of epileptic patients are gluten sensitive/have coeliac disease. So, ask for that also to be excluded. Not saying it is but a quick blood test.

Please take photos of your rash to show a doctor. Vitamin B12 deficiency originates in the gut. COVID can create a whole heap of problems - way beyond me, I’m not a doctor, just a person on a website.

Erm, sorry, I don’t know much else.

Best wishes