Covid

[FrustratedHuman]

Anyone else start having all these issues after the covid vaccine?

[210272]

Hi FrustratedHuman,

I've seen reports of this in other groups and in posts about FND too so I think it's becoming more widely recognised, at last. I haven't had time to read this but saw it on a reputable page about M.E. ow.ly/CZuL50SHGGg

I think there are various groups for people with vaccine damage and that some people have managed to claim compensation but I am aware that the outsourced govt agency that's handling this in the UK has been deemed 'not fit for purpose'. No surprises there, then.

[FrustratedHuman in reply to 210272]

Interesting for sure! I am in US, half of my doctors agree with the diagnosis and half say that FND is just something they name your diagnosis if they are unsure... Frustrating!!

[210272 in reply to FrustratedHuman]

David Tuller and David Putrino wrote an opinion piece in STAT about this but I can't find a link for it, sorry. Doctors should not give a FND dx on that basis since it brings their profession into disrepute and does iatrogenic harm in the process. If you're on Facebook it's worth looking at David Tuller's blogs for further information and some may still be open for comments which you can make anonymously. FND education (for doctors) in the UK is notoriously bad (from the patient perspective) and people are being diagnosed during short conversations with doctors (in one case a 3 minute consultation in a corridor) and then told to 'google it' But I don't know what it's like in the States. The upside in the UK are that there are now some doctors here who don't agree with Perez et al that FND is a neuropsychiatric condition but whether or not they can effectively challenge that notion remains to be seen. I'll be impressed with the FND Feminists if some of them join this hub but feel that Diane O'Leary nailed it in her response to the FND is a Feminist Issue paper, especially regarding misdiagnosis.

Meanwhile I'd ask whoever made your FND dx (if you have one) what 'rule in' signs were used to make the diagnosis and whether your treatment plan needs updating in the light of new information about vaccine damage.

[210272 in reply to FrustratedHuman]

Hi FrustratedHuman - I share your frustration about this and I think David Tuller would too. Is it OK if I send him what you wrote here? I know he's interested in the actual vs reported FND misdiagnosis stats and I am too, especially from the perspective of someone with a rare condition since people with rare and less common conditions (especially those that mostly present in women) are often misdiagnosed with FND initially.

[FrustratedHuman in reply to 210272]

Yes it is ok for you to share. And thanks I will look David Tuller up!

[210272 in reply to FrustratedHuman]

Thank you I've emailed it to David but I know he's very busy at the moment. Is it OK if I post it on my Facebook timeline too?

[gomelgo]

I started having them all after COVID and firmly believe it caused my PD

[FrustratedHuman in reply to gomelgo]

Does you doc also believe this? Where are you located?

[gomelgo in reply to FrustratedHuman]

No they don't, but they do think it's possible and maybe even likely that if I was prodromal, that COVID put me over the edge.

[koshca]

Yes, definitely

[Analogue45]

to be honest it will be a coincidence I never had the vaccine and I ended up with it , it so hard and unfair for everyone who gets the diagnosis and no answers, how are you coping with everything, , anything that helps you take care