New here, hello!: Hi!I had my second... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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New here, hello!

HappyGardener6 profile image
6 Replies

Hi!I had my second Pfizer jab in 2021 and went to bed as usual to find myself jerking uncontrollably. This continued and began to happen during the day. I was referred to Neurology and diagnosed after numerous tests with Myoclonus. The neurologist was interested in the possible link to the Covid jab, but at that time there were very few reported cases. He put me on meds and discharged me.

By 2023 I saw my GP to talk about the increase in symptoms; right leg weakness, internal tremors, brain fog and an inability to summon the correct words, muscular and joint pain with really loud joint cracking and sometimes chest pain and breathlessness. I was referred again to the neurologist on December 21st 2023 and during the appointment he said that I had FND. He gave me the Web address; neurosymptoms.org and told me to take a look, sent a letter for me to be assessed by Neuro Physio and discharged me once again!

I'm really struggling with the chronic fatigue side of things and although I realise that I'm relatively lucky, symptom wise, I worry about the future. I'm very glad to have found this place and all of you with your experience.

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HappyGardener6 profile image
HappyGardener6
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6 Replies
Misstea profile image
Misstea

On facebook, there's are some groups for people with FND. You will find that many who gotten the jab also developed FND. I share most of the symptoms you have except I was diagnosed in 2019 and my issue started with a migraine.

HappyGardener6 profile image
HappyGardener6 in reply toMisstea

Thank you very much for your response and the help.

Lady4 profile image
Lady4

Hi

Sorry to hear you are suffering.

We got sent to that website twice, once in June 22 (CRPS) and again in Nov 22 (FND) and it was all done wrong. GP referred to Paeds, Paeds dx CRPS, no mention of FND (to us) but it was in GP's letter which I found out in Nov following Physio appt. OT referral rejected 3 times, put on a waiting list beginning of 2023,

Following Physio appt requested Neuro from GP, again done wrong. Sent referral to QE Adults (child 15 years then), QE forwarded to Childrens Hospital, Childrens Hospital rejected because GP can't refer, Paeds should have. Did parent or GP get advised of rejection, nope just disappeared into thin air until parent got to the bottom of what had happened.

Strong letter to GP, GP referred to Paeds, who then referred to Neuro. Neuro appt June 22, chased letter several times, told should be in drafts (if not did I have any notes) but secretary assured me referral done. Luckily in drafts, received letter Dec 23, referral for "talking therapy" done Dec 23, appoint for end of Apr 24.

In all fairness, it was bought forward (prob due to my voicemail to Neuro saying lying to patients is detrimental to their mental health and my son was lucky to have me bit other young adults may be struggling alone, or something like that. I wasn't rude just pointing out the facts and potential consequences). Sadly, my son was ill with this seasonal virus, so couldn't attend, awaiting new appt.

But back to you, GP shouldn't have discharged and should have definately referred you to Neurology.

HappyGardener6 profile image
HappyGardener6 in reply toLady4

Oh my goodness! I'm so sorry for you both and your continuing battle. I can really sympathise, as we had years of trying to help my daughter with her mental health. She ended up diagnosing herself with ADHD and then my battle really began, struggling to get her an official diagnosis and meds, so she could manage her life better. We got there in the end and so will you, but why does it have to be such a struggle? Thanks so much for your response. I must admit that my GP was quick to refer me when she didn't know what was happening. It was the neurologist who was equally quick at discharging me after telling me what I had! Seems to be par for the course! Good luck!

Suffering_sunny profile image
Suffering_sunny

I am got my 3rd jab in Dec 2021, and tingling started a week later. I didn't think about it until January 2023, when I had Mt 4th jab, and 2 days later had globus and things have gone swiftly down hill from there.

They gave me all these stomach acid medicines saying I was 'just stressed' (implying I was imagining things)

I brought up the jab and connected the dots.

My b12 also tends to sit low normal, and after months of PPI H2 and antacids I belive it crashed down. Now I'm being treated for b12 deficiency, and I am in a really bad way.

I went from a returning university student, in a science related subject I excelled at, with a part time job, who ran over mountains - to unable to do anything at all.

I do belive that the covid jab started all of this, and I used to work in healthcare, I studied science, and I have always had all my vaccines. So I'm not a conspiracy theorist type - but I do believe people when they say that the jab or covid has ruined their lives. For anyone to shout anti vaxxer at the people who have been harmed - is cruel and inhumane.

HappyGardener6 profile image
HappyGardener6 in reply toSuffering_sunny

Hello there! I'm so sorry to hear all that you are going through. I'm not an anti vaxxer per se, but there seems to be a large number of people finally getting heard about probable connections and why wouldn't we want to protect what's left of our health? Also, given the dreadful 'follow the science' stance in the uk, which changed to suit the politicians why would anyone have any trust in our leaders?

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