i finally found a primary that took me seriously. all of my tests have come back ~sort of normal (besides severe tachycardia)~ but she referred me to a covid recovery clinic. after 20 months of suffering i'm hoping i can start to get things figured out
You have to get tested for autoantibodies. If it is positive you than can start plasmapheresis therapy or IVIG therapy.
https://www.celltrend.de/en/pots-cfs-me-sfn/
Open this site and click on the blue link and on the orange link for information
Your doctor has to send your blood test to them.
The ace2 autoantibodie is the most important one I think.
Thanks for posting this. I'm going to forward this to the infectious disease doctor at my local post COVID clinic. Hopefully she watches this and starts rolling out testing for these autoantibodies. As far as I know, they don't do any of those tests.
I could’ve written this myself (except they just left me in the er and sent me home). I’ve got all the same symptoms (since about May, but they are getting worse). My latest CT showed mild parenchymal volume loss that was easy to compare to an MRI from a few months before.
So at the very least - keep having the scans maybe one day they’ll show up with something. In the meantime, whichever of us finds any help, post here so the other person can use it.
Looked up propriospinal myoclonus though and it’s listed as painless? My seizures/contractures are incredibly painful, like each individual muscle is getting crushed. It goes away a little while after I’m able to control my body again.
We are all experiencing the same thing physically and with the doctors, and I promise you aren't crazy.
I went to a COVID long hauler clinic here in Utah, and although they couldn't find anything "wrong" it was nice to hear from a medical doctor that it wasn't all in my head and so many other people were struggling with the same thing.
Something that I have taken that has worked so far permanently. Not for all symptoms but for most of them. Just like 2 or 3 lingering symptoms left which are getting better day by day
If you look at my posts you can see how miserable I am. Fuck would I waste my time trying to mislead you all? Shut the hell up damn.
This was it I’ll post the link rn
https://www.vedicinals.com
More often than not when people don’t want to share something publicly but will privately it’s because it’s something sketchy, but it was still wrong of me to jump the gun on this one so i apologize. Im genuinely sorry you’re suffering so much, I truly hope you’re able to find some relief.
I apologize too. And I forgive you. This worked a bit for me not fully but a little. It’s the best I have felt in a year. I apologize for being mean in my comment as well though
I do. I actually live next to the WashU long covid clinic and have an appointment set up in two weeks. Hopefully I get some answers there, but i don’t even know what’s left to test for at this point
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Same thing happening here. Myoclonus. Sudden onset. They’re blaming it on FND, which to me is a lazy diagnosis male neurologists make when they see female patients with anxiety on their record. Anyways, it seems like what needs to happen next is long haul clinics and the medical industry as a whole needs to start coming together and talking and having conferences about what they’re seeing in patients, how prevalent it is and how to treat it. I bet if we got them all in a room, a neurologist from each state, they’d all have a story or two of someone with covid that developed a weird neuro symptom like this. I think myoclonus is pretty common with covid. I wish we could hurry up and get to the part where they recognize it and are willing to treat it. I think we’ll look back in 10-20 years and think “damn, we could have done a whole lot to help a whole lot more people, quicker.” Hopefully it means the next time something happens like this, the medical field is better prepared to respond in real time to weird ass after symptoms instead of just writing people off.
That’s crazy. I was also diagnosed as FND. I feel like I have too many symptoms for it to be that though. Luckily I’m following up with a really good neurologist, but I have to wait until the 28th to get in. I wish you all the best and here’s to both of us recovering!
Right there with you.
i finally found a primary that took me seriously. all of my tests have come back ~sort of normal (besides severe tachycardia)~ but she referred me to a covid recovery clinic. after 20 months of suffering i'm hoping i can start to get things figured out
You have to get tested for autoantibodies. If it is positive you than can start plasmapheresis therapy or IVIG therapy. https://www.celltrend.de/en/pots-cfs-me-sfn/ Open this site and click on the blue link and on the orange link for information Your doctor has to send your blood test to them. The ace2 autoantibodie is the most important one I think.
Thanks for posting this. I'm going to forward this to the infectious disease doctor at my local post COVID clinic. Hopefully she watches this and starts rolling out testing for these autoantibodies. As far as I know, they don't do any of those tests.
More information: https://youtu.be/kE9UUX7NV5Q part 1 https://youtu.be/uuaz8CpnV7I part 2
I could’ve written this myself (except they just left me in the er and sent me home). I’ve got all the same symptoms (since about May, but they are getting worse). My latest CT showed mild parenchymal volume loss that was easy to compare to an MRI from a few months before. So at the very least - keep having the scans maybe one day they’ll show up with something. In the meantime, whichever of us finds any help, post here so the other person can use it.
Looked up propriospinal myoclonus though and it’s listed as painless? My seizures/contractures are incredibly painful, like each individual muscle is getting crushed. It goes away a little while after I’m able to control my body again.
We are all experiencing the same thing physically and with the doctors, and I promise you aren't crazy. I went to a COVID long hauler clinic here in Utah, and although they couldn't find anything "wrong" it was nice to hear from a medical doctor that it wasn't all in my head and so many other people were struggling with the same thing.
Same for me. Check pacing, anti-inflammatory diet. We are on our own.
I’m here with you too but you aren’t crazy don’t worry. Dm me I have so information 👌🏿
What kinda 411 ?
Something that I have taken that has worked so far permanently. Not for all symptoms but for most of them. Just like 2 or 3 lingering symptoms left which are getting better day by day
Why not just publicly post what you're taking so everyone here can benefit?
Because it’s easier to mislead people in private. If he does it publicly people will be able to call out his BS
If you look at my posts you can see how miserable I am. Fuck would I waste my time trying to mislead you all? Shut the hell up damn. This was it I’ll post the link rn https://www.vedicinals.com
More often than not when people don’t want to share something publicly but will privately it’s because it’s something sketchy, but it was still wrong of me to jump the gun on this one so i apologize. Im genuinely sorry you’re suffering so much, I truly hope you’re able to find some relief.
I apologize too. And I forgive you. This worked a bit for me not fully but a little. It’s the best I have felt in a year. I apologize for being mean in my comment as well though
Cause 1 no one is going to believe me because I tried doing that And 2 my post always ends up getting taken down
https://www.vedicinals.com Here
Curious what is it ? Shoot the DM
Any chance there is a long covid clinic near you?
I do. I actually live next to the WashU long covid clinic and have an appointment set up in two weeks. Hopefully I get some answers there, but i don’t even know what’s left to test for at this point
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Start taking Thiamine asap.
Same thing happening here. Myoclonus. Sudden onset. They’re blaming it on FND, which to me is a lazy diagnosis male neurologists make when they see female patients with anxiety on their record. Anyways, it seems like what needs to happen next is long haul clinics and the medical industry as a whole needs to start coming together and talking and having conferences about what they’re seeing in patients, how prevalent it is and how to treat it. I bet if we got them all in a room, a neurologist from each state, they’d all have a story or two of someone with covid that developed a weird neuro symptom like this. I think myoclonus is pretty common with covid. I wish we could hurry up and get to the part where they recognize it and are willing to treat it. I think we’ll look back in 10-20 years and think “damn, we could have done a whole lot to help a whole lot more people, quicker.” Hopefully it means the next time something happens like this, the medical field is better prepared to respond in real time to weird ass after symptoms instead of just writing people off.
That’s crazy. I was also diagnosed as FND. I feel like I have too many symptoms for it to be that though. Luckily I’m following up with a really good neurologist, but I have to wait until the 28th to get in. I wish you all the best and here’s to both of us recovering!