Has anyone with FND been able to obtain an exemption pass? I gave the form to my GP but they said that FND was not in their list of exemptions advised me to get a second opinion in a private clinic. My question was if most doctors in The NHS do not know about FND how they expect the private to know?
Please help as I fear my symptoms will worsen if I get vaccinated.
If it's any consolation, I had both doses of the vaccine and it didn't make any difference to my FND. I had a few mild side-effects but they only lasted a couple of days. I'm going for my booser shot next week because I would rather have a few mild side effects than catch covid. I have a friend who now has long covid and it's terrible.
I have FND and I have had 2 jabs and a booster, I did have some side effectsSore arm, flu like for a couple of days and tiredness.
But nothing like the symptoms you can get with Covid!
My father in law died, my sister in law who was a ‘real’ runner now struggles today to jog gently, Her partner has lung damage, he used to do the run/swim/ bike races, he now struggles to run. They all caught it in Jan 2020 so it is nearly a year. Plus now there is another new variant ……… Please get your jab!
I can understand your hesitancy, I had both Astra vaccine and didn't have any effects on FND. I also have heart condition. For me it was a matter that is was too dangerous not to. We had our vaccine, it encouraged our children to do it as well. But please be guided by your doctor, not Google. Please take care. Moni
I think your concerns are valid enough. But unless you have had covid before and recovered, where you might be able to fight and prove you have gained immunity naturally (I have no idea why people forget that we have immune systems and many of us have had cold brought on by a coronavirus before), you might have to prove and stand by your convictions. The fact that perfectly health people have developed FND, among neurological issues, that have never had such health problems before should not be overlooked and ignored.
Hi. I'm just following the topic. I was previously healthy before a dose of Astra Zeneca put me in hospital with functional problems. Loss of use of right leg with pain swelling and cramping, full body tremors left arm and shoulder, weird sensations through my body, and parasthesia, breathing problems and weakness Fortunately I've recovered mostly. I had covid recently and whilst it was unpleasant and dragged on I am fine now although I think it triggered some slight Neuro symptoms. I was treated like a hypochondriac in the hospital and plonked on a stroke ward with elderly people dying around me and told I had a virus! It's a difficult one whether to vax or not.
I'm glad you recovered, for the most part. I was fortunate to have developed FND before this pandemic (it still stinks though). I'm sorry you even developed it yourself. Still, I'm glad you said something. A lot of people also developed FND from COVID as well, though I'm not sure if it is a certain strain or general that caused it. I really think that this is not an "everyone needs to vaxx" issue if clearly people are being hurt by these vaccines as well.
I am really sorry you had to deal with all that, on top of this strange thing happening to us we have to encounter difficulties with medical staff. But this is mostly how medical staff disregard FND patient.
Hi. I had alsmost the same thing bit with moderna. Had a reaction 15 years ago with an other vaccin with the same ingredient. Now i react each time i'm taking some pill with the same product in it. Because it's not a normal allergic reaction i wonder if fnd be trigger just by a specific produc. Would like to be test for a kind of vasculitis that can be trigger by an allergic reaction or mastocytose. Did they test you for that. The last time i had livedo reticularis. Blue leg like a corpse. By the time the last neuro saw me i was better, that when he told me that's maybe fnd. But he didn't see my previous blue leg. My symptom always go away 12 to 24h after the medication was taken.
Hi
I don't know what they tested for in the hospital last year so not sure if I was tested for mastocytosis. I do have frequent flare ups of symptoms a year on from the jab but still no diagnosis as the docs don't seem interested in giving me one. Just had a flare up,really bad fatigue, aches and pains, weakness, dizziness, weird sensations in my body, incidentally I noticed my symptoms got worse after eating and if I focused on them. Omg, blue leg! Bet that super scary when that first happened..do you know what the drug is that triggers you?
Since the vaccin, i had to stop everything with polyéthylène glycol in it. My previous medication had the ingredient in it and i didn't have problem. I try different medication with the culprit ingredient in it and note i long i can stand it and the effect. The problem is the allergic test on the skin i didn't react, but i don't react either at my shampoo. I'm not stress about the effect. I have a scientifique mind so i like to try to find the real problem and i'm always curious of the effect. I don't care the testing on myself so i'm pretty sure my symptom are not stress related. With the blue leg (look exactly like livedo reticularis)i wasn't able to walk for like 8hours. It's why they say it's maybe fnd but my symptom with my leg happen each time i'm taking medication with polyethylene glycol in it. I had stiffness in my neck so i took cyclobenzaprine and i tough that 12 hours later thd effect is over so i took dexilant because they tough that maybe i have a reflux probleme. And when i start having pain in one eye they gave me tylenol in hospital and stupid of me, didn't ask for ingredient. 8hours after the medication i saw the neuro and i was able to lift a litle bit my leg and walk small distance. 10 hours after my last medication everything was normal. It's why i'm not sure it's fnd. I think maybe i have SANA because it look the same and it didn't show on normal blood test. Can be a vasculitis because the first time i was coughing like crazy and only a big quantity of benadryl work. The sevond time, i almost have an emboly. They treat me for one and check with the scan 10 hours later. I'm pretty sure if they had done the other way around maybe they would have seen something. Vasculitis can cause different problem and can be cause by an allergic trigger. Now i need to convice my neuro to send me to an other doctor to find out before i get stuck with fnd. I am ready to try again taking the same medication to test it.
Hi
I have had a bad case of Covid last year and to be honest I rather have the Covid than to have a bad case of FND. My symptoms have improved and I have been back to work since last year after ten years of not being able to work. I don’t want to get back to the state that I was. Thanks everyone for replying.
Why are worried about vaccine exemption? For a holiday? Are you worried about a vaccine passport? I haven’t had any and there’s no way I would. I know 4 people who have been so badly affected by the VAXX and they have been shunned and denied by doctors to start with. Eventually they had to be taken seriously and admitted it was the VAXX. I’m not saying it will happen to everyone but I don’t know anyone who’s got COVID and died or even been near to being hospitalised. I don’t know why people are so obsessed with a virus that has a 99.7 plus survival rate.
Hi
I am asking because of my work,
Not really bothered to travel or anything else. My work is begging to ask about vaccinations.
Maybe wait for them to ask then just explain that with your condition you aren’t willing to risk having a reaction from the vaccine and then give them all the links you need? You can link the yellow card scheme and there’s now plenary of documented cases of FND post vaccine.
I have written to my GP and sent researches done which had proven that the vaccine triggers FND symptoms, my doctor said that the condition isn’t listed under the category to not get vaccinated and so she could not sign the form. She advised me to seek private doctors as NHS woud not sign my form m.
So now you have to go and pay a doctor to sign it…. that’s terrible and kind of says it all.
ninds.nih.gov/Current-Resea...
webmd.com/vaccines/covid-19...
Thanks for posting this. Makes total sense. If you have a propensity to something (like GBS) triggered by covid, then you will have the same response, but much milder, if you get the vaccine. This response will be far weaker than if you get covid without having had the vaccine first. Some doctors believe that FND is caused by a virus.
Hi, if I am honest I doubt you will get an exemption in the grounds of FND. Doctors are really difficult when it comes to FND. I have FND and other health complications so i took both doses of the vaccine and the booster. It had some side effects similar to having the flu. But nothing really affected my FND. It’s a complete personal choice about the vaccine; but I don’t believe it will affect FND symptoms
I had both jabs and a booster. Apart from a sore arm and a few aches and pains for a couple of days, I was fine. I know people who have had covid and are still struggling, and some that have died. It is a matter of personal choice,but mine was to protect me and those around me.
Well said I totally agree with you Drs will not admit vaccine damage from these jabs even when the evidence is clear
Big pharma don’t want the public to know ..too much to loose
There are safe and affective treatments for covid that are cheap and been approved for many years but they are being blocked in just about every country
Trials of these were a paper exercise and not long enough or with enough subjects but that is not the issue these treatments work , keep people out of hospital and prevent death
Big pharma , gps etc are paid per vaccine so money comes before health
Let’s not forget these vaccines are in clinical trial until 2023 and therefore anyone has the right to refuse something that is experimental and no exception. Needed
You can exempt yourself because you have the right to choose and based on the lack of data , info abd unknown long term affects you cannot make a fully informed choice
Tge ingrediebts in these vaccines are not fully declared and do not need to be under emergency use so therefore no one knows really what’s in them
I won’t ever have it ..my choice my body
I take natural quinnine vit d zinc and vit c that with your natural immunity system is enough no matter what he’s,th conditions you have
X
I worried more about my symptoms if I caught Covid-19
My daughter was diagnosed with FND but she has had the vaccine and booster as she has seen first hand those who have not. She is aware of her triggers and is careful. Better to jab than not.
Thanks everyone for your responses
As I said I lived with FND symptoms for years and have not been able to work. I am working now and able to manage my symptoms. I don’t want to be bed bound again and completely depending on others to care for me. I also had Covid and although it was bad, I would rather face covid than to live a life with FND, feeling completely useless. At least Covid has two ends only, you either die or get better. FND comes to stay and if you recovers, it most likely to take its time to get better.
By the way for many of you suffering with FND who have lost hope, I am a living proof that symptoms can improve. I have been back at work and it’s been 1 year and 3 months. So please don’t give up, there is hope.
I had no neurological symptoms until I got the vaccine. Since then I have Peripheral Neuropathy but the doctor says it’s FND. I won’t be having any more jabs. This has ruined my life
Sorry to hear that
I am trying my best to avoid but it seems that it will be impossible to get the vaccine pass for people with FND.
Again, if you have had COVID-19, try to argue natural immunity. Unless you have a form of an autoimmune issue, you should be able to say you are already immune. I know they are pushing everyone to get the vaccine, even though realistically, not everyone should get it but there are some doctors who have mentioned something about what really happens if a natually immune person got a vaccine for a virus they are immune to.
I’m so sorry this has happened to you. I wish they would admit and recognise that the VAXX does carry a risk that needs to be weighed up.
I had my 1 stAZ jab in March this resulted in collapse / blackout/ drop fall on patio breaking my good ankle in two places and two big bumps on my head. My left side which has FND is totally useless hardly any movement in the leg/ ankle does not move. Hospital A&E where useless kept asking me when I had a stoke had not heard of FND they where only interested in my broken ankle, got no help since neurologist in Sheffield ( FND consultant) stated it was vaccine with FND that had caused the collapse. There is no way I will have another one I am having pay for private neuro physio as NHS rehabilitation is currently 10 month wait. I am so much worse now I am angry because before I went for the jab I asked GP if it was safe and told him of my condition and reaction to medication and he said I would be fine and condition was not listed as a concern. I feel really let down especially when it went wrong they haven’t helped me and they have not contacted me to research it, surely they should be carrying out research when people react like I did ,I know I’m not the only person to have a reaction so how do they improve a vaccine when do not follow up reaction like I had.
Hi
I am sorry to know that you are dealing with all of this. To be honest, this people don’t really care about us and many think that we make up our symptoms. I feel the same way as I asked fo the exemption and doctor didn’t sign. It isn’t right.
Hi,
You may feel ropy with the first dose, or maybe with the second if you got away with it scot free at the first. It's far better than COVID which is actually exacerbating FND for many - even if the infection wasn't severe. It's even causing previously healthy people to develop FND. Alan Carson was on the BBC about long COVID and there are certainly FND elements in it. So not having the vaccine is a worse risk if you already have FND.
I had COVID at the beginning and I was hypoxic and it wasn't pleasant is an understatement. I suddenly couldn't breathe like someone had thrown a switch. I had to text my husband as I couldn't speak, let alone call out for him. He had to phone the ambulance.
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