Holy shit didn't expect that. Thanks for the update, was annoyed about random crap that happend today, but this showed me how insignificant all that little daily stuff really is. I love how you deal with the situation, especially the fine motor skills training. You know to take on problems on and off the wall! I doubt a lot of people would even have the courage to post a video like this about themselves. Hope you get better soon 😥 Your drawings are still way better than anything I ever brought to paper 😅
This hurts to watch! I've enjoyed watching you battle hard boulders over the years and loved every minute of it! I'll enjoy watching you battle this as well! You got this and a strong supporting cast behind you! ✌️ and ❤️
Hi Lizzy, I have been following your videos for a long time. What has always impressed me is your very positive outlook on life and your way of approaching problems in a very pragmatic (and also humorous) way. This is especially evident in this situation! I want to wish you a speedy recovery and I'm very excited for the next episode. Even if the video takes 5 hours, I would still watch it. Whenever you're longing for some comfort, motivation, distraction, or just an open ear, know that you can get it from me at any time and without hesitation. As I'm sure you will from many, many other commenters. :-) Best wishes from Germany Alex
This is so very tough to endure for you. I am sure everyone watching this appreciates the update and wishes you a full recovery! Been watching your content all the way back when you took a teardrop camper to Colorado.
@@lizzy.ellison I am so very sorry 💔 I admired you , and I wish to ask you please let me know did you had all the vaccines ? Could it have been because of the vaccines? I have read at your #instagram about people comments that this #could have happen because of the vaccines 🥴😮🥺 God bless you 🙏🏻I wish you recovered soon and I will keep you in my prayers 💓 You are a wonderful person and also beautiful💓🙏🏻
@@yousun4177 She just explained that the causes of that syndrome are not well-understood but there are correlations with viral infections. There is no reason to believe vaccines cause it anymore than getting viruses.
@@yousun4177 I was thinking the same thing. I assumed she was fully vaccinated because she travels and she probably had them in order to travel. I have seen multiple videos with young people and a couple middle aged people that got this, and it was not long after they had the shots that it set in. It wreaks havoc on the immune system - weakens it and messes it up for some people. Prayers for her and so many others dealing with “mysterious illnesses” out of the blue. 💜🙏
@@cheriedewald914 OMG🥺That is so sad😔 so young & beautiful🙏🏻 Now I confess makes me feel scared too🥴 cause I already had two vaccines . So I don’t want to have anymore and I wish #Lizzy can recovered 🙏🏻 Thank you🙌🏻
The drawings are so cute! It's hard to put into words, but your story moved me deeply. It must have been hard going through many diagnoses without result. I wish you all the best and a good way to recovery, I want to see you crushing boulders again!
You are such an inspiration to me. I'm the same age as you, and I've been watching your videos, ever since you started this channel. They got me stoked every time and made me want to train harder. Wishing you all the best, many hugs from Hungary.♥
I am from Cape Town and know how bad service is here in South Africa in general. Sorry to hear you had to go through all that, stuck in a country like this. Hope you make a great recovery, and may you be climbing again soon! ❤ Thanks for the video, it makes us aware that life can change in an instant. We have to be grateful for what we have!
Hello, I landed on your RUclips from Instagram as I saw a feed from your IG acct. I cried watching this video, because your mystery autoimmune and hopefully, very temporary, health condition. Life always brings us to our knees sometimes and places things into perspective. You are brave and doing the right thing by posting this on social media. I hope you will find relief and a cure.
It really hurts to see that you have to suffer from such a condition. I wish you, your family and Paul much strength and a speedy and full recovery for you from the bottom of my heart. Thanks for sharing your story and feelings with us. If it gives you strength to endure this, keep updating us and don't think people won't care or that your stories are "meaningless". Believe me, it means a lot. I've not only been following you, just because you're a strong climber, but mainly because of the joy and optimism you're spreading, when tackling a problem and I'm certain you will face this with the same fortitude. Keep your spirit girl. Much love and power!
Lizzy, I wish you only the best! You are a strong person and will be even stronger after your recovery! A thought from me about your illness: Just a few months after the Covid vaccination, I became ill with an autoimmune disease. Hashimoto's thyroiditis, a chronic inflammation of the thyroid gland. Just coincidence or not, unfortunately I don't know. Here in Germany, however, there are public reports of sometimes severe after-effects of the vaccination. It often affects young and athletic people. If you have been vaccinated against Covid, that might be a clue. But whatever the reason for your illness, the main thing is that your life becomes easier again. Many greetings from Germany! 🍀
This is bloody awful, but I'm more taken a back by how you've handled the situation so far. You seem so composed & optimistic despite the bullshit hand life has decided to deal you. Looking forward to the updates, good luck on the recovery mate.
11:30 I love that drawing 😊 And can't begin to imagine how scary all of this is. I don't know where you get it from to be so positive and it is ... heartwarming to see. Cheers, you rock✌️
Loved this video and appreciate you making it! Your attitude and motivation is awesome! We’re all psyched to see you doing a little better and hope that it’s as smooth a track ahead as possible! Badass drawings too! :)
Thank you for making this video. I've watched your RUclips channel for years and always appreciated your blog style videos. Wishing you a full recovery and hopefully. ❤️
Lizzy, bless your heart! i cannot imagine what you are going through. I have never heard of this terrible disease. I am sure you hadn’t either! I was diagnosed in 2011 with a blistering disease we believe was because of 8 years of antibiotic therapy for a MRSA infection that went to my bone after i contracted it from the hospital after a spinal surgery. The infection was from 1995-2003 and after several surgeries they were able to stop antibiotics but i am still affected with multiple autoimmune diseases now. I am interested in your situation and hearing about it just makes me realize that although i am affected with issues i am still very fortunate. I will pray for you for continued healing, you will recover!
what a crazy wild ride that must be Lizzy, but thanks for sharing your story so bravely and honestly! 4 yrs ago I had a rare brain condition and took a tough 8 month recovery process with the help of an excellent team, loads of neuro rehab etc., and lots of family support. Made me appreciate a lot of things in life with new perspective. I'm 100% fine now but at the start everyone said prospects of a full recovery were low. One day at a time! Keep firing the animal drawings; they rock! ;)
Hi, just discovered your Insta today, you are so brave and beautiful! I had a similar situation happening to me in 2010, it took me almost 2 years to fully recover and it never happened again since then. It was a misteriois condition , appeared out of the blue, I 've never been in a hospital before. In my case I found out later that my best friend gradually put something in my food to harm me. I know you have a diagnosis now but also take in to consideration the possibility of ingesting something poisonous during your trip in the wild or being bitten by something that triggered this reaction in your body! I am so happy that your condition is improving so well, that is great !! Keep posting , bringing awareness is so important! You can vlog your entire experience towards healing, I am sure people would love to watch! Greetings from Europe! ♥️
Hi lizzy, I too was diagnosed with opsoclonus myoclonus syndrome in 2021. I was in work one day and noticed I was having difficulty with performing fine motor dkills such as holding a pen to write. Next I felt dizzy and off balance balance. I went to the hospital and my CT scan identified a mass that was malignant. However, The lab test were negative for the antibody. I always wondered if this syndrome was triggered by covid or another illness I experienced. Its now 3 years later and the neurological symptoms have subsided about 80%. (tremors, imbalance, light sensitivity, snd dizziness) I perform vestibular exercises. I hope your symptoms also improve. I will pray for you. God bless you.
I pray that you can get the right treatment to put you into remission. You are an inspiration to what it means to be brave. You are mentally strong and physically I saw you tackle mountains with such power. I hope you will be able to go back to doing what you love. Thank you for sharing your story.
Glad you seem to be improving! Saw you featured on Reddit and wanted to see how you were doing. Your sunglasses are super cute (I want a pair lol). Best wishes to you!! I hope you recover and get solid answers soon!
Its got to be incredibly hard to have been so strong and in control climbing just a short time ago, and now its like your body is betraying you. I'm so sorry. I hope and pray that the underlying strength you have from all your hiking and climbing will serve you well in your revovery. I hope that remission is on the horizon and you won't have to deal with and relapse.
I just was shown your instagram stories, this made me want to understand what happened. I hope you fully recover and pray for it, I like your drawings even the ones you don’t seem to like, i’m bad a drawing… keep up the good work on yourself. Thank you for the video.
Holy shit, you guys are having a rough run! Really hope all your symptoms completely resolve--never to return-- and you can get back to blogging about your awesome climbing adventures.
I am so glad I came across your video. I have opsoclonus myoclonus ataxia syndrome (OMAS) also and it is so hard to find information/ accounts of this syndrome online (let alone from adult patients), so thank you so much for sharing your story- we are not alone! I also have had paraneoplastic (cancerous or benign tumours) ruled out as a cause of onset in my case, so cause is likely viral, possibly due to covid vaccine in my case - has this been investigated in your case? (Just to clarify, I am not anti vaccine- if my OMAS was caused by vaccine-, this is incredibly rare and should not deter anyone else from getting vaccinated. The cause of my OMAS cannot be proven 100% at any rate- I could have unknowingly had a virus that set it off). My first symptoms also included dizziness as well as extreme tiredness (fatigue?). I ended up in hospital as my house doctor thought I was having a stroke end feb 2021. My symptoms started around 7 feb 2022, I was eventually diagnosed April 2022. I am still not 100% but so much better than I was 6 months ago. I am in physiotherapy for my walking and recently (mid December 2022) did a globulin iv treatment course- i think(hope) my myoclonus symptoms have improved since then- according to what I have heard (from doctors/neurologists), this treatment, though it doesn't work for everyone, works better the earlier you have it, so maybe that's something you want to discuss with your own neurologist? My opsoclonus is still very much an issue (I can write but reading is difficult, sometimes impossible) but I feel like I have improved majorly (albeit with one relapse already) since the onset of this syndrome. I really hope that you improve too, even more so and faster than me❣
Wow! How crazy. OMS is obviously rare but Post infectious is even rarer! Yes we have discussed the vaccine. It is not the cause for me At this point in my recovery it’s kinda impossible to determine the cause, but luckily we don’t NEED to know to treat it. I did do some IVIG treatments and I had a ton of improvement with that. We are trying to get me back on it and off of the oral steroids I have been using but we’re having a lot of issues with insurance:/ I hope you can read this! Im flipped. My eyes are pretty good most the time now but the Myoclonus has been stubborn. Best of luck in your recovery and thank you for taking the time to watch this and write to me. I know how much that can take out of you. 🤍
I don't mind the lengthy video actually. I couldn't stop watching and felt like I could keep listening to your story. I really hope you get the help you need to fully over come this. I don't even know you but I can't wait for more updates.
As a fellow young patient who all of a sudden couldn’t walk with neurological symptoms and went through many of the same tests, this sadly makes me feel heard. To go from healthy to immobile must have been so scary especially in another country! Your spirit and energy through this shines girl, your hard work is so visible to me 🫶🏻
Your story sounds so much like mine but a different rare neuroimmune disorder. I have Transverse Myelitis, got it at age 28 in 2004. I was an athlete, competed in figure skating, coached, taught pre-k half days, busy but good life then all of a sudden severe nerve pain in my back and the paralyzed from the mid-chest down. Inflammation found in my spinal cord at T1-T3. They also think it was post viral..
Lizzy wishing you a solid recovery and sending you lots of positive energy! ❤️ Stay strong!! PS Are you still doing pet portraits? I have a daschador named Fred who you will prob think is cute and fun to draw 😃
If you dm me some pics on instagram @ineverlearnedhowtodrawhands then I will probably do it! There are about 100 in my inbox there but I do plan to keep doing them as I’m feeling well!
I've been following your story with the disease but this is the first time I heard you were in South Africa when you got sick. Being a South African, my first guess at a post-infectious issue that arose while in SA is that you got TB (Tuberculosis), which pretty much everyone has here in some shape or form. Idk if any of the doctors brought it up. Once you got to the States they probably havent seen TB in their lives and wouldnt recognise it if it slapped them in the face, so Idk, look into it.
Lizzy, so sorry this has happened. I hope it's going to be fine in the long rung. Hope the american health care system isn't too expensive, but it probably is. Might be worth setting up a donation link, I'd put some up because this is total shit. Get better.
Dear heavens this is a lot. I found you just doing some research trying to figure out what the heck is wrong with me. Your symptoms look and sound just like mine. It’s no fun. I can’t even get a diagnosis besides anxiety, all I know is it started after a car accident. I think possibly I got something called CRPS from the injury which then causes the immune system to attack the immune system. I figure I’ll pass along what’s been really working for me. Got deep inside my head using meditation (the journey was very painful) and found a pathway to where the place where the symptoms come from. I’ve been able to reduce my symptoms quite substantially. All the way to where I can tell what direction means again. It seems whatever unconscious process that’s damaged, I’m able to bypass it and move in a different way. My tremor is almost 100% gone now and balance is starting to come back. I can tell my brain is starting to skip over the faulty wiring and learn to work correctly again. Passing this along in case you have the same problem as me with doctors. Whatever comes about, know that there’s always more healing than science knows about waiting for you!
I have been a medical mystery for about 22 yrs. It is so fun being a mystery! Nope just kidding. Best advice I have is always advocate for yourself. If you feel you aren't being listened to keep at the Drs. Some Drs like easy to fix patients only. You know your body better than anyone else.
Hope you can regain abilities to read, climb etc ! Sucks how recovery isn't a linear process, hope you are also getting emotional rest. also - really good video idea
Hi. I am really sorry you are going through this. One observation….it probably isn’t going to be helpful….your body state seems to mimic what happens when you have a panic attack. I’m not saying this is anxiety related….but whatever area of the brain that affects panic attacks might be in overload mode?! Sorry again. Just a weird thought. Wishing you a speedy recovery.
Wow. I stumbled on your Instagram post and followed you here to RUclips. I can't imagine going through your experience. You are so strong and trying to keep a positive attitude during this mysterious illness. Of course it is none of my business but I cannot help to wonder if you received "the thing" for "something 19" before your trip to South Africa. My concerns are genuine and not political whatsoever so please don't misinterpret my intentions. The sad reality is that many recipients of "the thing" are experiencing numerous ailments including autoimmune disorders. Most doctors seem to be clueless. You don't have to answer the question for me but answer the question for your peace of mind. I am a man of faith and will be praying for your full recovery.
Do you have a source for "The sad reality is that many recipients of "the thing" are experiencing numerous ailments including autoimmune disorders"? Also, isn't it expected that as we have almost 5 billion people who were vaccinated some people are going to develop health conditions that they would also develop without any vaccine? How does one prove causality?
I agree with you Rick. I have seen multiple videos of people with similar symptoms after they had the shots. Some were younger and a couple middle aged people. Their bodies were attacking their immune systems and some also could not speak very well in addition to not being able to control their limbs or walk well. Facebook would not allow a support group of people that developed this as they don’t want that narrative out where mass public can see it. Israel and Europe have published many of these findings along with other illnesses, but the US has not.
Did you take the Phizer covid shots? Lots of stuff like this autoimmune and neurological problems from the mRNA shots in otherwise healthy young people.
I hope you recover soon and get back to climbing. I suggest you check out Dr. John McDougall. He's had remarkable success over the past 40 years improving and curing a range of autoimmune diseases, using a low fat, starch-based diet free of oils and animal products. He believes autoimmune diseases are triggered when foreign animal proteins get directly into the bloodstream from leaky gut syndrome.
i'm not a doctor, but I've seen a trend of this rare syndrome coming up after vaccination (especially C-19 vax). Keep the option open as to 'why' you have this syndrome. Not saying this to scare you but it might lead you to better treatment. Keep all options open. Hope you'll get better.
I have to second this reply zuurkool. I have seen many people here in Belgium with sudden onset of autoimmune after the shot. Here the doctors are openly admitting that this was the cause. Healthy people in their 20s and 30s being diagnosed with conditions usually quite rare. Joshua, i know you roll your eyes but sadly this cant be ignored or dismissed.
@@joshuahenry918 No need to roll your eyes! I just wanted to write that my sister had similar symptoms after getting the shot. Not as severe as shown here. But she was really scared and so were we. (I myself had no symptoms at all, like most of the people I know.) In Germany there are quite a few 'documentaries' running - even on legitimate state TV - that show people who had similar symptoms after the shot. In these, they also talk about how hard it is to be taken seriously, so please...
Lol. This is the least scientific and most anecdotal and cognitively biased claim. Also, it could be aliens. Keep all options open. Not saying this to scare you.
I was wondering about that as well, but I doubt it and can explain why. This particular vaccin stimulates cells to produce the proteinshape found on the virus, which your body then reacts to. During that process the cells in question are of course destroyed by the immune system, as they should be because they now appear alien. It is said the effect wears off slowly enough for your body to have a response, and quickly enough for it not leave noticeable damage. But I have been wondering about two things. What if it doesn't wear off? What if it stimulates the wrong cells to grow these protein shapes? It is injected into the shoulder, but what if it is injected into a vein and starts stimulating cells in vital organs? What if both of the above? I haven't been able to find anything on that outside of echochambers in weird places, so for now I'm still wondering about that. But I doubt this has anything to do with Lizzy's condition. If this were true, her immune system is still thinking there is an infection going on and as such her body should still be teeming with the antibodies that normally back off ones an infection is fought off, which would be noticed by her doctors. Thoughts?
Please don't ever question the value of sharing your story!
Hoping you're able to make a full recovery and get back to crushing it in the near future
Holy shit didn't expect that. Thanks for the update, was annoyed about random crap that happend today, but this showed me how insignificant all that little daily stuff really is. I love how you deal with the situation, especially the fine motor skills training. You know to take on problems on and off the wall! I doubt a lot of people would even have the courage to post a video like this about themselves. Hope you get better soon 😥
Your drawings are still way better than anything I ever brought to paper 😅
This hurts to watch! I've enjoyed watching you battle hard boulders over the years and loved every minute of it! I'll enjoy watching you battle this as well! You got this and a strong supporting cast behind you! ✌️ and ❤️
Hi Lizzy, I have been following your videos for a long time. What has always impressed me is your very positive outlook on life and your way of approaching problems in a very pragmatic (and also humorous) way.
This is especially evident in this situation!
I want to wish you a speedy recovery and I'm very excited for the next episode. Even if the video takes 5 hours, I would still watch it.
Whenever you're longing for some comfort, motivation, distraction, or just an open ear, know that you can get it from me at any time and without hesitation. As I'm sure you will from many, many other commenters. :-)
Best wishes from Germany
Alex
This is so very tough to endure for you. I am sure everyone watching this appreciates the update and wishes you a full recovery! Been watching your content all the way back when you took a teardrop camper to Colorado.
💓
@@lizzy.ellison
I am so very sorry 💔 I admired you , and I wish to ask you please let me know did you had all the vaccines ?
Could it have been because of the vaccines?
I have read at your #instagram about people comments that this #could have happen because of the vaccines 🥴😮🥺
God bless you 🙏🏻I wish you recovered soon and I will keep you in my prayers 💓
You are a wonderful person and also beautiful💓🙏🏻
@@yousun4177 She just explained that the causes of that syndrome are not well-understood but there are correlations with viral infections. There is no reason to believe vaccines cause it anymore than getting viruses.
@@yousun4177 I was thinking the same thing. I assumed she was fully vaccinated because she travels and she probably had them in order to travel. I have seen multiple videos with young people and a couple middle aged people that got this, and it was not long after they had the shots that it set in. It wreaks havoc on the immune system - weakens it and messes it up for some people. Prayers for her and so many others dealing with “mysterious illnesses” out of the blue. 💜🙏
@@cheriedewald914 OMG🥺That is so sad😔 so young & beautiful🙏🏻 Now I confess makes me feel scared too🥴 cause I already had two vaccines . So I don’t want to have anymore and I wish #Lizzy can recovered 🙏🏻
Thank you🙌🏻
you are so brave. thank you for the update.
The drawings are so cute! It's hard to put into words, but your story moved me deeply. It must have been hard going through many diagnoses without result. I wish you all the best and a good way to recovery, I want to see you crushing boulders again!
You are such an inspiration to me. I'm the same age as you, and I've been watching your videos, ever since you started this channel. They got me stoked every time and made me want to train harder. Wishing you all the best, many hugs from Hungary.♥
Thank you 💗
I am from Cape Town and know how bad service is here in South Africa in general. Sorry to hear you had to go through all that, stuck in a country like this.
Hope you make a great recovery, and may you be climbing again soon! ❤
Thanks for the video, it makes us aware that life can change in an instant. We have to be grateful for what we have!
Really speechless, this is one of the craziest things ever. Hope you have a speedy recovery
Also, those cat drawings are fire!
Hello, I landed on your RUclips from Instagram as I saw a feed from your IG acct. I cried watching this video, because your mystery autoimmune and hopefully, very temporary, health condition. Life always brings us to our knees sometimes and places things into perspective. You are brave and doing the right thing by posting this on social media. I hope you will find relief and a cure.
This video is kinda genius, touching. Very brave of you to be getting through this experience.
It really hurts to see that you have to suffer from such a condition. I wish you, your family and Paul much strength and a speedy and full recovery for you from the bottom of my heart.
Thanks for sharing your story and feelings with us. If it gives you strength to endure this, keep updating us and don't think people won't care or that your stories are "meaningless". Believe me, it means a lot.
I've not only been following you, just because you're a strong climber, but mainly because of the joy and optimism you're spreading, when tackling a problem and I'm certain you will face this with the same fortitude.
Keep your spirit girl. Much love and power!
Lizzy, I wish you only the best! You are a strong person and will be even stronger after your recovery!
A thought from me about your illness: Just a few months after the Covid vaccination, I became ill with an autoimmune disease. Hashimoto's thyroiditis, a chronic inflammation of the thyroid gland. Just coincidence or not, unfortunately I don't know. Here in Germany, however, there are public reports of sometimes severe after-effects of the vaccination. It often affects young and athletic people. If you have been vaccinated against Covid, that might be a clue.
But whatever the reason for your illness, the main thing is that your life becomes easier again. Many greetings from Germany! 🍀
Thank you for sharing and being vulnerable. So happy that you are getting care. Wishing you all the best.
This is bloody awful, but I'm more taken a back by how you've handled the situation so far. You seem so composed & optimistic despite the bullshit hand life has decided to deal you. Looking forward to the updates, good luck on the recovery mate.
11:30 I love that drawing 😊
And can't begin to imagine how scary all of this is. I don't know where you get it from to be so positive and it is ... heartwarming to see. Cheers, you rock✌️
Loved this video and appreciate you making it! Your attitude and motivation is awesome! We’re all psyched to see you doing a little better and hope that it’s as smooth a track ahead as possible! Badass drawings too! :)
Thank you for making this video. I've watched your RUclips channel for years and always appreciated your blog style videos. Wishing you a full recovery and hopefully. ❤️
I'm really sorry to hear about this, Lizzy. It sounds truly terrible. Hang in there & best of luck with your recovery! 🤞🤞
Lizzy, bless your heart! i cannot imagine what you are going through. I have never heard of this terrible disease. I am sure you hadn’t either! I was diagnosed in 2011 with a blistering disease we believe was because of 8 years of antibiotic therapy for a MRSA infection that went to my bone after i contracted it from the hospital after a spinal surgery. The infection was from 1995-2003 and after several surgeries they were able to stop antibiotics but i am still affected with multiple autoimmune diseases now. I am interested in your situation and hearing about it just makes me realize that although i am affected with issues i am still very fortunate. I will pray for you for continued healing, you will recover!
I hope you make a speedy and full recovery! Hang in there💙
what a crazy wild ride that must be Lizzy, but thanks for sharing your story so bravely and honestly! 4 yrs ago I had a rare brain condition and took a tough 8 month recovery process with the help of an excellent team, loads of neuro rehab etc., and lots of family support. Made me appreciate a lot of things in life with new perspective. I'm 100% fine now but at the start everyone said prospects of a full recovery were low. One day at a time! Keep firing the animal drawings; they rock! ;)
Hi, just discovered your Insta today, you are so brave and beautiful! I had a similar situation happening to me in 2010, it took me almost 2 years to fully recover and it never happened again since then. It was a misteriois condition , appeared out of the blue, I 've never been in a hospital before. In my case I found out later that my best friend gradually put something in my food to harm me. I know you have a diagnosis now but also take in to consideration the possibility of ingesting something poisonous during your trip in the wild or being bitten by something that triggered this reaction in your body! I am so happy that your condition is improving so well, that is great !! Keep posting , bringing awareness is so important! You can vlog your entire experience towards healing, I am sure people would love to watch! Greetings from Europe! ♥️
Get well soon! Luv the drawings. May the force b w U!
Hi lizzy, I too was diagnosed with opsoclonus myoclonus syndrome in 2021. I was in work one day and noticed I was having difficulty with performing fine motor dkills such as holding a pen to write. Next I felt dizzy and off balance balance. I went to the hospital and my CT scan identified a mass that was malignant. However, The lab test were negative for the antibody. I always wondered if this syndrome was triggered by covid or another illness I experienced. Its now 3 years later and the neurological symptoms have subsided about 80%. (tremors, imbalance, light sensitivity, snd dizziness) I perform vestibular exercises. I hope your symptoms also improve. I will pray for you. God bless you.
I pray that you can get the right treatment to put you into remission. You are an inspiration to what it means to be brave. You are mentally strong and physically I saw you tackle mountains with such power. I hope you will be able to go back to doing what you love. Thank you for sharing your story.
You and your story completely intrigues me. Just Subscribed. Will be watching and waiting for new content
Woah! So sorry this happened! You are so tough to deal with this and I pray for your continued recovery!
Glad you seem to be improving! Saw you featured on Reddit and wanted to see how you were doing. Your sunglasses are super cute (I want a pair lol). Best wishes to you!! I hope you recover and get solid answers soon!
Its got to be incredibly hard to have been so strong and in control climbing just a short time ago, and now its like your body is betraying you. I'm so sorry. I hope and pray that the underlying strength you have from all your hiking and climbing will serve you well in your revovery. I hope that remission is on the horizon and you won't have to deal with and relapse.
Prayers and best wishes 🙏
I’m sorry this happened to you. It’s good to hear you so positive and level headed about this situation. Wishing the best for you.
Je t’envoie toute ma force bon courage et bon rétablissement
I just was shown your instagram stories, this made me want to understand what happened. I hope you fully recover and pray for it, I like your drawings even the ones you don’t seem to like, i’m bad a drawing… keep up the good work on yourself. Thank you for the video.
Holy shit, you guys are having a rough run!
Really hope all your symptoms completely resolve--never to return--
and you can get back to blogging about your awesome climbing adventures.
I am so glad I came across your video. I have opsoclonus myoclonus ataxia syndrome (OMAS) also and it is so hard to find information/ accounts of this syndrome online (let alone from adult patients), so thank you so much for sharing your story- we are not alone! I also have had paraneoplastic (cancerous or benign tumours) ruled out as a cause of onset in my case, so cause is likely viral, possibly due to covid vaccine in my case - has this been investigated in your case? (Just to clarify, I am not anti vaccine- if my OMAS was caused by vaccine-, this is incredibly rare and should not deter anyone else from getting vaccinated. The cause of my OMAS cannot be proven 100% at any rate- I could have unknowingly had a virus that set it off). My first symptoms also included dizziness as well as extreme tiredness (fatigue?). I ended up in hospital as my house doctor thought I was having a stroke end feb 2021. My symptoms started around 7 feb 2022, I was eventually diagnosed April 2022. I am still not 100% but so much better than I was 6 months ago. I am in physiotherapy for my walking and recently (mid December 2022) did a globulin iv treatment course- i think(hope) my myoclonus symptoms have improved since then- according to what I have heard (from doctors/neurologists), this treatment, though it doesn't work for everyone, works better the earlier you have it, so maybe that's something you want to discuss with your own neurologist? My opsoclonus is still very much an issue (I can write but reading is difficult, sometimes impossible) but I feel like I have improved majorly (albeit with one relapse already) since the onset of this syndrome. I really hope that you improve too, even more so and faster than me❣
Wow! How crazy. OMS is obviously rare but Post infectious is even rarer! Yes we have discussed the vaccine. It is not the cause for me
At this point in my recovery it’s kinda impossible to determine the cause, but luckily we don’t NEED to know to treat it. I did do some IVIG treatments and I had a ton of improvement with that. We are trying to get me back on it and off of the oral steroids I have been using but we’re having a lot of issues with insurance:/
I hope you can read this! Im flipped. My eyes are pretty good most the time now but the Myoclonus has been stubborn.
Best of luck in your recovery and thank you for taking the time to watch this and write to me. I know how much that can take out of you. 🤍
I don't mind the lengthy video actually. I couldn't stop watching and felt like I could keep listening to your story. I really hope you get the help you need to fully over come this. I don't even know you but I can't wait for more updates.
Hope the doctors are able to figure things out for you and you get better soon!
Really appreciate your sense of humor. I wish you all the best :)
Hope you feel better soon, wishing you all the best.
I hope you get well soon.I am 12000 km away from you but I got really sad.May God give you strength.
Wow!! Man I wish u all the best. You're a strong girl!
As a fellow young patient who all of a sudden couldn’t walk with neurological symptoms and went through many of the same tests, this sadly makes me feel heard. To go from healthy to immobile must have been so scary especially in another country! Your spirit and energy through this shines girl, your hard work is so visible to me 🫶🏻
Your story sounds so much like mine but a different rare neuroimmune disorder. I have Transverse Myelitis, got it at age 28 in 2004. I was an athlete, competed in figure skating, coached, taught pre-k half days, busy but good life then all of a sudden severe nerve pain in my back and the paralyzed from the mid-chest down. Inflammation found in my spinal cord at T1-T3. They also think it was post viral..
That is one thing they thought I might have at that start of all this! It’s so crazy how suddenly life can change. Thank you for sharing.
Get well soon and back at crushing Lizzy
Greetings from Greece
Lizzy wishing you a solid recovery and sending you lots of positive energy! ❤️ Stay strong!!
PS Are you still doing pet portraits? I have a daschador named Fred who you will prob think is cute and fun to draw 😃
If you dm me some pics on instagram @ineverlearnedhowtodrawhands then I will probably do it! There are about 100 in my inbox there but I do plan to keep doing them as I’m feeling well!
Hey lizzy I found listening to your to your story very interesting since I have a similar one. I would like to message you with some inspiration!
I wish you all the best! You're inspiring 💪
speedy recovery for you !!! ;)
Good luck with your human body. I love your sense of humor.
Best of luck! ❤
You're an amazing person !
wow your story blow my mind i hope you will heal soon
I've been following your story with the disease but this is the first time I heard you were in South Africa when you got sick. Being a South African, my first guess at a post-infectious issue that arose while in SA is that you got TB (Tuberculosis), which pretty much everyone has here in some shape or form. Idk if any of the doctors brought it up. Once you got to the States they probably havent seen TB in their lives and wouldnt recognise it if it slapped them in the face, so Idk, look into it.
I like that your sweater matches your chair
Very sorry to hear this. Keep fighting
Lizzy, so sorry this has happened. I hope it's going to be fine in the long rung. Hope the american health care system isn't too expensive, but it probably is. Might be worth setting up a donation link, I'd put some up because this is total shit. Get better.
Dear heavens this is a lot. I found you just doing some research trying to figure out what the heck is wrong with me. Your symptoms look and sound just like mine. It’s no fun. I can’t even get a diagnosis besides anxiety, all I know is it started after a car accident. I think possibly I got something called CRPS from the injury which then causes the immune system to attack the immune system.
I figure I’ll pass along what’s been really working for me. Got deep inside my head using meditation (the journey was very painful) and found a pathway to where the place where the symptoms come from. I’ve been able to reduce my symptoms quite substantially. All the way to where I can tell what direction means again. It seems whatever unconscious process that’s damaged, I’m able to bypass it and move in a different way. My tremor is almost 100% gone now and balance is starting to come back. I can tell my brain is starting to skip over the faulty wiring and learn to work correctly again. Passing this along in case you have the same problem as me with doctors. Whatever comes about, know that there’s always more healing than science knows about waiting for you!
I have been a medical mystery for about 22 yrs. It is so fun being a mystery! Nope just kidding. Best advice I have is always advocate for yourself. If you feel you aren't being listened to keep at the Drs. Some Drs like easy to fix patients only. You know your body better than anyone else.
Hope you can regain abilities to read, climb etc ! Sucks how recovery isn't a linear process, hope you are also getting emotional rest. also - really good video idea
Thank you!!💗
Hi. I am really sorry you are going through this. One observation….it probably isn’t going to be helpful….your body state seems to mimic what happens when you have a panic attack. I’m not saying this is anxiety related….but whatever area of the brain that affects panic attacks might be in overload mode?! Sorry again. Just a weird thought. Wishing you a speedy recovery.
Love and Health ❤
Could it have been a virus that lay dormant in your body? The Dr's mentioned that to me when I had transverse myelitis.
Just ❤️
Holy shit. Get well soon.
Do you pray 🙏🤩
❤️🙏🏻
is this disorder treatable or is it long term? really sorry
Can you please share if you received the Covid vaccine or not?
How many vaccine shots/boosters have you had?
Mate... stop
That is a legitimate question. This is one of the autoimmune disorders reported in Europe and Israel as a direct result of the shots.
@@cheriedewald914 Citation needed
I developed an autoimmune condition from Pfizer. The immunologists on my case said they’ve seen others develop it after both vaccines and the virus.
Did you get the vaccine?
Did you get vaccinated?
Wow. I stumbled on your Instagram post and followed you here to RUclips. I can't imagine going through your experience. You are so strong and trying to keep a positive attitude during this mysterious illness. Of course it is none of my business but I cannot help to wonder if you received "the thing" for "something 19" before your trip to South Africa. My concerns are genuine and not political whatsoever so please don't misinterpret my intentions. The sad reality is that many recipients of "the thing" are experiencing numerous ailments including autoimmune disorders. Most doctors seem to be clueless. You don't have to answer the question for me but answer the question for your peace of mind. I am a man of faith and will be praying for your full recovery.
Do you have a source for "The sad reality is that many recipients of "the thing" are experiencing numerous ailments including autoimmune disorders"? Also, isn't it expected that as we have almost 5 billion people who were vaccinated some people are going to develop health conditions that they would also develop without any vaccine? How does one prove causality?
I agree with you Rick. I have seen multiple videos of people with similar symptoms after they had the shots. Some were younger and a couple middle aged people. Their bodies were attacking their immune systems and some also could not speak very well in addition to not being able to control their limbs or walk well. Facebook would not allow a support group of people that developed this as they don’t want that narrative out where mass public can see it. Israel and Europe have published many of these findings along with other illnesses, but the US has not.
Did you take the Phizer covid shots? Lots of stuff like this autoimmune and neurological problems from the mRNA shots in otherwise healthy young people.
Definetely that. Scientific literature is full of papers on it.
You TikTok scientists are braindead, its really cute. Cite some studies. Literally all you can find is the opposite of your statements
Pfizer triggered mast cell activation in me. Was made 100x worse by my subsequent COVID infection. I suffered countless anaphylactic reactions.
Poor girl
COVID vacaciones ???
Do not do It again
You're so beautiful
I hope you recover soon and get back to climbing. I suggest you check out Dr. John McDougall. He's had remarkable success over the past 40 years improving and curing a range of autoimmune diseases, using a low fat, starch-based diet free of oils and animal products. He believes autoimmune diseases are triggered when foreign animal proteins get directly into the bloodstream from leaky gut syndrome.
i'm not a doctor, but I've seen a trend of this rare syndrome coming up after vaccination (especially C-19 vax). Keep the option open as to 'why' you have this syndrome. Not saying this to scare you but it might lead you to better treatment. Keep all options open. Hope you'll get better.
*rolls eyes furiously
I have to second this reply zuurkool. I have seen many people here in Belgium with sudden onset of autoimmune after the shot. Here the doctors are openly admitting that this was the cause. Healthy people in their 20s and 30s being diagnosed with conditions usually quite rare. Joshua, i know you roll your eyes but sadly this cant be ignored or dismissed.
@@joshuahenry918 No need to roll your eyes! I just wanted to write that my sister had similar symptoms after getting the shot. Not as severe as shown here. But she was really scared and so were we. (I myself had no symptoms at all, like most of the people I know.)
In Germany there are quite a few 'documentaries' running - even on legitimate state TV - that show people who had similar symptoms after the shot.
In these, they also talk about how hard it is to be taken seriously, so please...
Lol. This is the least scientific and most anecdotal and cognitively biased claim. Also, it could be aliens. Keep all options open. Not saying this to scare you.
I was wondering about that as well, but I doubt it and can explain why.
This particular vaccin stimulates cells to produce the proteinshape found on the virus, which your body then reacts to. During that process the cells in question are of course destroyed by the immune system, as they should be because they now appear alien.
It is said the effect wears off slowly enough for your body to have a response, and quickly enough for it not leave noticeable damage. But I have been wondering about two things.
What if it doesn't wear off?
What if it stimulates the wrong cells to grow these protein shapes? It is injected into the shoulder, but what if it is injected into a vein and starts stimulating cells in vital organs?
What if both of the above?
I haven't been able to find anything on that outside of echochambers in weird places, so for now I'm still wondering about that.
But I doubt this has anything to do with Lizzy's condition. If this were true, her immune system is still thinking there is an infection going on and as such her body should still be teeming with the antibodies that normally back off ones an infection is fought off, which would be noticed by her doctors.
Thoughts?
I hope this is just a joke (I hope so)
Pogs