advice please

[Somewhere-intheuk]

Hi all my first post not sure where to start but a month after having my second AZ vaccine I had stroke like symptoms which was a shock considering I have been really lucky with my health compared to so many, anyway all clear but balance walking and my head could not register on things a neurologist come to see me and said within 20 seconds you have FND you can go home now I said I feel crap but no was sent home and within a week I was back in said again you have FND you are going home but I knew it was not FND I still think it is to do with the vaccine a nurse I know thinks I have got ataxia and Gillian barre syndrome as the vaccine did cause patients to get that

Now my symptoms are walking and balance absolute crap cannot focus cannot drive

Muscle weakness in my hands arms and shoulders they are now putting that down to arthritis and my walking and balance due to being 59

Then some doctors see FND on the paperwork and ignore me and send me home saying it is all in my head if it was why am I in so much pain discomfort and keep falling over while out they will not accept it is anything to do with the vaccines any advice Please

[pinjem]

So sorry to hear this, it must be very frustrating. I cannot advise except if you have an ataxia diagnosis, see a specialist? I have had the ' walking and balance absolute crap cannot focus cannot drive' symptoms and it can be part of ataxia, initially a stroke had to be ruled out as a cause. I wonder if you could be referred to an ataxia specialist who know what they are doing with regard to ataxia? Sometimes even a small infection or upset can make my symptoms worse for a while.

[Somewhere-intheuk in reply to pinjem]

Hi thanks for that I have been fighting my doctors by email and I have finally been told to make a appointment with a senior doctor regarding a full body scan and I will be asking to see a ataxia specialist at the same time

Take care hope you have a good weekend and keep fighting

[wobblybee]

I’m so sorry. Many of us have, for whatever reason, struggled to be heard …myself included.

Once a ‘diagnosis is given..it can be very difficult to take things further.

I have seen reference to neurological symptoms being triggered after a Covid vaccination.

Bear in mind..Neurological conditions often have symptoms that can ‘overlap’ or are similar.

Your GP is the person who can refer you …ask for a second opinion.

[StriatedCaracara]

I had a bad reaction to AZ.

I treat myself on aspirin a lot.

Eventually SOB and headaches stopped, but I had become photosensitive. I think the aspirin prevented my blood clotting. I think I'm borderline AntiPhospholipid Syndrome (APS)

I used the Internet to find out about blood clotting and the various factors and what it was with AZ that was causing problems, which is something different to APS.

On a different theme I relate to having autonomic dysfunction or dyautonomia.

Sending a link in case it is help.

thedysautonomiaproject.org/...

This I had started to get before my AZ jab. I think I have been on a path of things going wrong. Maybe one thing making me more susceptible to another.

I used to be extremely well also. I had to go private although no insurance, to make any headway. I am under the care of a really good rheumatologist as symptoms were found to be due to inflamation although markers normal, an AntiNuclear Antibody (ANA) test done by my GP came back strongly positive. Levels can go up and down though.

I get a lot of bad reactions to things now, not just AZ, but drugs and contrast agents.

When I use 111 say 3am in the morning. 50% calls good, 50% not so good. Found it way of getting opinions too.

Emailing researchers who have published in good journals recently can also help.

Hoping and praying things turn around soon.

You end up feeling you have the knowledge to apply to medical school.

[Stagger]

Hi there. I find your post very interesting. Had to look up FND (Functional Neurological Disorder). I have Cerebellar Ataxia with CCAS (Cerebellar Cognitive Affective Syndrome). The psychological symptoms of FND and CCAS are very similar to me. One thing to note and hopefully put your mind at ease is that (according to what I have read on two or three sources) FND is a Neurological disorder and not a psychological one. It should not be seen as 'it's all in the head'. This is a very negative and degrading term that gives the impression there is nothing wrong. 'Its all in the brain' is a better term to use. Wishing you well.

[Pacitto]

Firstly I think seeing a neurologist who can organise blood tests to determine if this is a type of Ataxia, examinations etc.A full body scan I have had due to my Scholosis of the spine which is very disabling. This can give precise pictures of arthritis, brittle bones, any problems with skeletal issues not seen with a scan.

Gullane Barrie syndrome I have first hand experience, in 2010 my only daughter was in a coma with this for 4 weeks, it has taken her many years to get back walking talking, but left her disabled with several nurelogical conditions. This syndrome is extremely rare, The symptoms you suggest do not to me sound anything like Gullian Barrie Sindrome.

The Covid Jabs ...as we all know can cause many problems I sincerely hope that you can gain some insight into your health. Good luck xx

[penelope2]

Yes I too found your post very interesting,there is certainly a lot going on for you.Firstly the Covid vaccinations side effects i think have been hidden by the NHS. I filled in the yellow card twice because of side effects after vaccines and boosters but not heard anything back.

Also know someone who had such serious side effects is not able to come off steroids.

Inflammation in the body and autoimmune conditions the doctors do not know themselves the course this will take or how to treat them and they have a problem doing joined up thinking. So overlapping conditions are not only difficult to diagnose its like your feet are not connected to the rest of your body!

A neurological condition of any type should be a red flag but my experience is the doctors shake their heads and say, this is very rare, and refer you, so another year waiting. That's all we seem to do is wait!

Sorry I can't be more help, I am quite disheartened myself. Over 10 years have not been given any positive help from medical professionals. So do my own research now and look after myself the best I can. Have learnt the hard way to not rely on doctors and neurologists.

Maybe if CA was recognised by NICE this would help but I'm not holding my breath.

Good luck.