Update - Getting Worse and No Help from the NHS
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Kept me in overnight and I’ve been diagnosed with functional neurologic disorder (essentially neuro symptoms in spite of clear tests) due to my Covid infections - seems to be a Neuro version of Chronic Fatigue. Frustratingly I keep trying to tell everyone my mental health is fine (albeit I’m super pissed at how it’s been handled locally.
Neuros are confident I should make progress with proper monitoring and treatment and things have gotten worse due to the lack of any intervention. They were shocked I haven’t had a proper consult since 2020. Going to properly refer me to the neuros locally.
So positive all in all - needed things to be ruled out and treatment to get moving and that’s been done. Absolutely phenomenal hospital. Whereas in Salisbury I waited a week and a half to see a neurologist I’ve been all done in less than 24 hours. It goes to show it’s a postcode lottery though- if you’re outside of London kiss goodbye to your health!
Neuros are confident I should make progress with proper monitoring and treatment and things have gotten worse due to the lack of any intervention. They were shocked I haven’t had a proper consult since 2020. Going to properly refer me to the neuros locally.
So positive all in all - needed things to be ruled out and treatment to get moving and that’s been done. Absolutely phenomenal hospital. Whereas in Salisbury I waited a week and a half to see a neurologist I’ve been all done in less than 24 hours. It goes to show it’s a postcode lottery though- if you’re outside of London kiss goodbye to your health!
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Hi @Sci_Fi_Fan You probably have that feeling that for every step you take forward you take two back! That must be very disconcerting and distressing. I really hope you do get a good neuro consult so they can get to the bottom of this and get you functioning again.
Here's wishing you all the best for finding out what's going on and getting the appropriate treatment and for your speedy recovery!
Here's wishing you all the best for finding out what's going on and getting the appropriate treatment and for your speedy recovery!
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@billliveshere @snow Thanks for the support!
@Maymay941 No, because I'm out of area they can't do anything there. They've done all they can which is chase stuff up locally, which, to be honest, was one of the main things I wanted. They've said I should be under the care of a neurology team and further investigations should be carried out so it's really sped stuff up.
Interestingly, they couldn't access my last MRI so it's still possible that did show something but it's unlikely. The frustrating thing is they are still kind of pushing the mental health element but my mental health is fine. I was really low when I was trying to teach and push through the illness but since then I've been fine. Plus, when this all kicked off I was really positive (because I didn't know how awful a workplace the school would be!). It's true I've been through a lot but then I'm also grateful for what I do have - there are a lot of people with Chronic Fatigue who are far worse off than me. Really, ever since I've been managing my autism properly my mood has been stable. I mean, I did move abroad and teach for a year in a really stressful environment and didn't develop any weird symptoms.
I think the bottom line is Covid's a really nasty virus which really can really screw you up if you caught it pre-vaccinations being a thing. I also am hyperallergic post-Covid and without my antihistamines sneeze like crazy and develop skin rashes. I thought the sneezing may just have been dust in the house but I was also sneezing like crazy in hospital which is the cleanest place you can be! My mother's also got pretty bad brain fog and moderate fatigue as well due to Covid. The issue is enough stuff isn't known about it really and it's only some really in-depth tests at Oxford which are revealing things - like the true impact on the lungs and the deterioration of grey matter in the brain it causes. Doctors don't like things they don't know but hopefully with some physio I'll at least be able to get out the house. It's like I tell people - my main annoyance is being unable to leave the house and I don't see how talking to someone on Zoom will help that!
Interestingly I found an article about people with MS type symptoms with negative MRIs, concluding autoimmune conditions can mimic MS and one of the theories out there is that Long Covid is an autoimmune thing (it would explain the allergies and my strong reactions to the vaccines):
@Maymay941 No, because I'm out of area they can't do anything there. They've done all they can which is chase stuff up locally, which, to be honest, was one of the main things I wanted. They've said I should be under the care of a neurology team and further investigations should be carried out so it's really sped stuff up.
Interestingly, they couldn't access my last MRI so it's still possible that did show something but it's unlikely. The frustrating thing is they are still kind of pushing the mental health element but my mental health is fine. I was really low when I was trying to teach and push through the illness but since then I've been fine. Plus, when this all kicked off I was really positive (because I didn't know how awful a workplace the school would be!). It's true I've been through a lot but then I'm also grateful for what I do have - there are a lot of people with Chronic Fatigue who are far worse off than me. Really, ever since I've been managing my autism properly my mood has been stable. I mean, I did move abroad and teach for a year in a really stressful environment and didn't develop any weird symptoms.
I think the bottom line is Covid's a really nasty virus which really can really screw you up if you caught it pre-vaccinations being a thing. I also am hyperallergic post-Covid and without my antihistamines sneeze like crazy and develop skin rashes. I thought the sneezing may just have been dust in the house but I was also sneezing like crazy in hospital which is the cleanest place you can be! My mother's also got pretty bad brain fog and moderate fatigue as well due to Covid. The issue is enough stuff isn't known about it really and it's only some really in-depth tests at Oxford which are revealing things - like the true impact on the lungs and the deterioration of grey matter in the brain it causes. Doctors don't like things they don't know but hopefully with some physio I'll at least be able to get out the house. It's like I tell people - my main annoyance is being unable to leave the house and I don't see how talking to someone on Zoom will help that!
Interestingly I found an article about people with MS type symptoms with negative MRIs, concluding autoimmune conditions can mimic MS and one of the theories out there is that Long Covid is an autoimmune thing (it would explain the allergies and my strong reactions to the vaccines):
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Autism be damned and the Covid horse it rode in on. Your communication here is clear as a bell you could not have pushed for medical exams signed up for school attended university found transportation when disabled looked into sports to join for your self gone to convention for Sci-fi or sport events.
I'm sure they have some reason to say you are depressed yet by in your communication here you are very an inspiration of purposeful action with a positive outlook on the overview
I'm sure they have some reason to say you are depressed yet by in your communication here you are very an inspiration of purposeful action with a positive outlook on the overview
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@Maymay941 Thanks! Yeah, I think having had mental health issues as a kid (which was really due to undiagnosed autism) it's something that follows you around in healthcare but then I've got good at being self-aware about my mood and I know what to look out for. Plus, with all the therapy I've had it's always been about making practical changes as well and I'm doing that as best I can. I've also been constantly fighting and trying to do everything I can with my current issues. I do a lot of mindfulness as well so it does seem as though I'm doing all the right things but it's still not shifting.
I just hope science finds out what's going on with long haulers like me. It does seem people can make a relatively quick recovery with the right physio and treatment though and that's really what's been holding me back. Interestingly, cranial osteopathy can help with functional neurologic disorder so I'm going to see if my osteopath here can do some and see if I notice an improvement. Having a diagnosis now might mean they can target stuff more easily.
I just hope science finds out what's going on with long haulers like me. It does seem people can make a relatively quick recovery with the right physio and treatment though and that's really what's been holding me back. Interestingly, cranial osteopathy can help with functional neurologic disorder so I'm going to see if my osteopath here can do some and see if I notice an improvement. Having a diagnosis now might mean they can target stuff more easily.
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I sometimes think that doctors like to stick the depression label on people - I had it happen to me after a head injury - because when someone is taking anti-depressants, they are 'happier' and complain less. I was put on Prozak and when that didn't solve a problem (that I never had in the first place) they told me to stop taking that and take this instead. No 'Wean yourself off slowly,' just 'stop taking it.' Until then, I believed that withdrawal symptoms were all in your head. Now I know better.
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@Sci_Fi_Fan I agree, scientists and doctors still have A LOT to learn about longhaul. I definitely still have brain fog because I know how fast I can work/produce/think at work, and since COVID, it remains at less than 100%. It seems to have halted somewhere around 80-85%, which is about how far my taste/smell recovered.
I wish you new hope with these developments. Bless us everyone for encouraging him to get to a hospital quickly! It helped! Yayyyy!
Any doubts about your mental health, and the twats can come read who clearly, intelligently, and warmly you write here
We'll vouch for you!
I wish you new hope with these developments. Bless us everyone for encouraging him to get to a hospital quickly! It helped! Yayyyy!
Any doubts about your mental health, and the twats can come read who clearly, intelligently, and warmly you write here
We'll vouch for you!
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Thanks for the support everyone it means a lot - this place is a such a brilliant disability support group - positive and practical. Think I'm going to the leave the Long Covid group as it's just annoying me of late.
@jeffswet Yeah, they jump on the depression bandwagon far too often. It's why my autism had gone undiagnosed for so long.
@snow Yeah, everyone I know who caught it pre-vaccine has prolonged issues and so the idea it's all just mass hysteria due to the anxiety of living in a pandemic is nonsense on stilts, considering how many people have it. It's obviously screwed something up somewhere. In terms of my mental health before all of this - my Mum's transplant at Xmas 2019 was very traumatic but I went to see a therapist ASAP and worked through all that. I actually had a very pleasant lockdown and wasn't concerned about the pandemic (as far I was concerned, I'd had Covid and had gotten over it). I was also extremely excited and positive about starting a new job (I had no idea about how awful it would be!)so I don't buy the MH angle. Plus, all stressors/trauma has been eliminated now. My main frustration is not being able to get out and talking to a therapist on Zoom won't help with that! Indeed, I've also done all the practical stuff to try and rectify that.
I'm pausing the degree so I don't have any deadlines in terms of needing treatment. I'm obviously not dying so I'll sit and wait and make the most of the limited stuff I can do.
@jeffswet Yeah, they jump on the depression bandwagon far too often. It's why my autism had gone undiagnosed for so long.
@snow Yeah, everyone I know who caught it pre-vaccine has prolonged issues and so the idea it's all just mass hysteria due to the anxiety of living in a pandemic is nonsense on stilts, considering how many people have it. It's obviously screwed something up somewhere. In terms of my mental health before all of this - my Mum's transplant at Xmas 2019 was very traumatic but I went to see a therapist ASAP and worked through all that. I actually had a very pleasant lockdown and wasn't concerned about the pandemic (as far I was concerned, I'd had Covid and had gotten over it). I was also extremely excited and positive about starting a new job (I had no idea about how awful it would be!)so I don't buy the MH angle. Plus, all stressors/trauma has been eliminated now. My main frustration is not being able to get out and talking to a therapist on Zoom won't help with that! Indeed, I've also done all the practical stuff to try and rectify that.
I'm pausing the degree so I don't have any deadlines in terms of needing treatment. I'm obviously not dying so I'll sit and wait and make the most of the limited stuff I can do.
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Hi @Sci_Fi_Fan, Stay strong as you are doing now and don't hesitate to reach out to anyone you think can give you competent help. I think you have it in you to prevail and find the best solutions. And please keep coming here as it's a good outlet for you and everybody here sympathizes and supports you!
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Musing on my hospital stay, it's made me even angrier at my GPs. Neuro was confident it's messages in the brain not getting through to my nerves properly (due to Covid) rather than anything deep-rooted. Everyone I know in London who's had Long Covid has got treatment and can function properly. There's a journal which shows that someone with FND due to Long Covid got better in four months. Four months from the summer would be around December time. If I'd have had the same recovery I wouldn't have needed to pause my degree. I'm doing everything I can - stretching, meditating, good sleep health, good diet etc. as well as having private osteopathy but obviously I need some expert intervention.
If it's FND or Chronic Fatigue it doesn't really make a difference - recovery is possible with the right help which I can't get - a temporary condition has been left to develop into a long-term one.
If it's FND or Chronic Fatigue it doesn't really make a difference - recovery is possible with the right help which I can't get - a temporary condition has been left to develop into a long-term one.
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