ScoutTN Posted October 7, 2021 Share Posted October 7, 2021 Praying! 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted October 7, 2021 Share Posted October 7, 2021 @ktgrok I am so sorry! This is very concerning and I feel terrible about it all. Hope you get some answers soon and the news is good. Quote Link to comment Share on other sites More sharing options...
Bootsie Posted October 7, 2021 Share Posted October 7, 2021 I am so sorry. This is so difficult for the entire family. I hope that you have answers (and effective treatment) soon. Quote Link to comment Share on other sites More sharing options...
Innisfree Posted October 7, 2021 Share Posted October 7, 2021 Thinking of all of you. I hope you get some good news soon. Quote Link to comment Share on other sites More sharing options...
BusyMom5 Posted October 7, 2021 Share Posted October 7, 2021 I hope its something simple and not serious- praying for your family. Quote Link to comment Share on other sites More sharing options...
Spryte Posted October 7, 2021 Share Posted October 7, 2021 Thinking of you all! Quote Link to comment Share on other sites More sharing options...
lmrich Posted October 7, 2021 Share Posted October 7, 2021 How scary. Lifting you all in prayer💓 Quote Link to comment Share on other sites More sharing options...
Wishes Posted October 8, 2021 Share Posted October 8, 2021 Still sending healing thoughts to your sister and thinking of your family. Quote Link to comment Share on other sites More sharing options...
JennyD Posted October 8, 2021 Share Posted October 8, 2021 Thinking of your sister and all the rest of your family, Katie. Hope she feels much better very soon. Quote Link to comment Share on other sites More sharing options...
Anne Posted October 8, 2021 Share Posted October 8, 2021 Praying, Katie! Anne Quote Link to comment Share on other sites More sharing options...
Frances Posted October 8, 2021 Share Posted October 8, 2021 I so hope she is doing better. Quote Link to comment Share on other sites More sharing options...
Shoeless Posted October 8, 2021 Share Posted October 8, 2021 How is she doing, @ktgrok? Hopefully better? Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted October 8, 2021 Share Posted October 8, 2021 @ktgrokthinking of you and hoping you and your sis are doing OK. Quote Link to comment Share on other sites More sharing options...
cintinative Posted October 8, 2021 Share Posted October 8, 2021 I totally missed that there was this thread when you posted on the other one yesterday @ktgrok It sounds really scary. Please update us when you can. Continuing to pray. Quote Link to comment Share on other sites More sharing options...
Drama Llama Posted October 8, 2021 Share Posted October 8, 2021 (edited) . . . Edited October 26, 2021 by BaseballandHockey Quote Link to comment Share on other sites More sharing options...
barnwife Posted October 8, 2021 Share Posted October 8, 2021 I hope you get some answers soon. Praying for you and your sister and family. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 8, 2021 Author Share Posted October 8, 2021 I spent the evening at the hospital. Turns out these symptoms started on Monday, but when she called the doctor they said she was just having a reaction to the steroids. Sthe stopped them, but it got worse. She was describing it as shaky, but what she meant was tremors. She also is stuttering, and has some vertigo as well. The doctor never showed up last night, finally called in orders around 9pm, not sure what they were. I am assuming they need to do the MRI perhaps to look for clots the CAT scan can miss, as well as look for MS type lesions, etc. But Covid can cause all sorts of neurological issues, including tremors and stuttering in some cases. 36 Quote Link to comment Share on other sites More sharing options...
cintinative Posted October 8, 2021 Share Posted October 8, 2021 Oh Katie that sounds so scary and frustrating. Prayers. Quote Link to comment Share on other sites More sharing options...
Starr Posted October 8, 2021 Share Posted October 8, 2021 I am so sorry. I continue to pray for her. Quote Link to comment Share on other sites More sharing options...
Kassia Posted October 8, 2021 Share Posted October 8, 2021 I wish I had something better to say than I'm sorry...I just feel so bad about all of this. Hope you get some answers soon and that she'll be okay. Sending hugs. Quote Link to comment Share on other sites More sharing options...
sangtarah Posted October 8, 2021 Share Posted October 8, 2021 I’m just seeing this, and wanted to say I’m praying for your sister, Katie! It sounds terrifying. I hope the MRI is clean and she gets better today. Quote Link to comment Share on other sites More sharing options...
Spryte Posted October 8, 2021 Share Posted October 8, 2021 Hoping for good, treatable results asap. Quote Link to comment Share on other sites More sharing options...
Zoo Keeper Posted October 8, 2021 Share Posted October 8, 2021 Still praying for your dear sister, Katie. And for you and the rest of the family. Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted October 8, 2021 Share Posted October 8, 2021 Praying for better care, accurate diagnosis, and effective treatment for your sister. Strength, wisdom, health, and perseverance for you and others caring for her. Peace for all. 1 Quote Link to comment Share on other sites More sharing options...
Tanaqui Posted October 8, 2021 Share Posted October 8, 2021 Here's hoping your next update is happier. Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted October 8, 2021 Share Posted October 8, 2021 Hoping for good news. Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted October 8, 2021 Share Posted October 8, 2021 Oh no. Sending lots more good thoughts and prayers her way. I hope they can do tests today and figure out what is going on. Quote Link to comment Share on other sites More sharing options...
MooCow Posted October 8, 2021 Share Posted October 8, 2021 Continuing to pray for your sister Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted October 8, 2021 Share Posted October 8, 2021 Praying Quote Link to comment Share on other sites More sharing options...
vonfirmath Posted October 8, 2021 Share Posted October 8, 2021 Continuing to pray Quote Link to comment Share on other sites More sharing options...
Jenny in Florida Posted October 8, 2021 Share Posted October 8, 2021 I've been following, Katie, and thinking of your sister and your whole family. I'm trying to avoid the "when the only tool you have is a hammer" thing, but I can't help wondering if your sister has been on any anti-depressants recently? Her symptoms sound a lot like what I experienced on the fluoxetine/olanzapine combination. My issues started subtly, but escalated to the point at which I was having trouble getting a sentence out because my jaw kept locking up, my hands/arms were jerking uncontrollably, and I lost my balance and fell when I was just standing in the bathroom. After that is also when I developed the really terrible vertigo (although the working theory on that is that falling down and smacking my head might have knocked loose the crystals in my ears, so, not directly a side effect of the medication). My symptoms (other than the vertigo, which required Epley chair treatment) alleviated once I was weaned off the medications. I do still have occasional issues with my jaw, but that is the only lingering problem we can directly attribute to the medication. 1 2 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 8, 2021 Author Share Posted October 8, 2021 15 minutes ago, Jenny in Florida said: I've been following, Katie, and thinking of your sister and your whole family. I'm trying to avoid the "when the only tool you have is a hammer" thing, but I can't help wondering if your sister has been on any anti-depressants recently? Her symptoms sound a lot like what I experienced on the fluoxetine/olanzapine combination. My issues started subtly, but escalated to the point at which I was having trouble getting a sentence out because my jaw kept locking up, my hands/arms were jerking uncontrollably, and I lost my balance and fell when I was just standing in the bathroom. After that is also when I developed the really terrible vertigo (although the working theory on that is that falling down and smacking my head might have knocked loose the crystals in my ears, so, not directly a side effect of the medication). My symptoms (other than the vertigo, which required Epley chair treatment) alleviated once I was weaned off the medications. I do still have occasional issues with my jaw, but that is the only lingering problem we can directly attribute to the medication. I had the same thought but no, she's not on any medications other than ADHD ones that she's had for years, and actually hasn't been taking lately since she's been home sick or caring for sick kids for the past month. (and these are not symptoms of withdrawal from those meds, either, and timing wouldn't make sense anyway) 4 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 8, 2021 Author Share Posted October 8, 2021 Doctor said not a stroke, they are discharging her tonight. I don't really have more info, sister was tired and not up to talking/and texting is really hard for her with the tremors. 14 11 Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted October 8, 2021 Share Posted October 8, 2021 Glad it wasn't a stroke. I hope you can get more info. I am sorry she is still having tremors. Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted October 8, 2021 Share Posted October 8, 2021 Well, That's good, of course. But what in the world? Can she get in to see a neurologist ASAP? 3 Quote Link to comment Share on other sites More sharing options...
Kassia Posted October 8, 2021 Share Posted October 8, 2021 Thanks for the update. Glad it wasn't a stroke. @WildflowerMom worded it perfectly, "But what in the world?" Hope you get some answers soon. What an ordeal. 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted October 8, 2021 Share Posted October 8, 2021 An outlier possibility: A friend of mine had a seizure and a migraine more or less simultaneously. It started with the seizure, but she didn't realize it was a seizure because she thought she was simply vomiting and sick to her stomach. It totally looked like a stroke to us. She experienced tremors and difficulty speaking (VERY garbled) for a solid week--I honestly don't remember what happened after that because this was years ago AND because everything changed when she was finally able to get the medical community to deal with her. In her case, when she went to the ER, they ruled out stroke and sent her home. End of story. Yet she absolutely couldn't take care of herself (uncoordinated) and her speech was alarmingingly garbled. The ER didn't want to deal with her if it wasn't one of the obvious Big Things. Some of how that played out has to do with her being very poor and also low IQ. She wasn't able to get effective care until another friend went WITH her to the ER a week later and acted like a bossy mom, basically insisting on the medical staff putting some effort into figuring this out. All her symptoms did peter out eventually, but I do not remember what interventions they did for her. In your sister's case, I wonder if the amount of hospital overwhelm has contributed to the tendency to rule out one of the Big Things and then move the patient on and out. I thought I would mention the migraine/seizure possibility to you as your sister continues to engage with her doctors. 2 Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 8, 2021 Share Posted October 8, 2021 (edited) There are case studies of patients with tremor and ataxia following respiratory symptoms of covid. I hope she is able to obtain thorough follow-up care and improves quickly. Early treatment is important (similarly to the way I'm being treated post vaccine). I hope she gets a good neurologist. Edited October 8, 2021 by melmichigan Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 8, 2021 Author Share Posted October 8, 2021 5 minutes ago, melmichigan said: There are case studies of patients with tremor and ataxia following respiratory symptoms of covid. I hope she is able to obtain thorough follow-up care and improves quickly. Early treatment is important (similarly to the way I'm being treated post vaccine). I hope she gets a good neurologist. Yup, they think it is covid related. She does have loss of taste and smell which are also considered neurological. I'm hearing 3rd hand, and don't know if they referred her to a neurologist or will be, but if not I'll get her names of reccomended ones. I also am looking into post covid/long covid type clinics in my state. There is one in Lakeland that looks pretty great but has months long wait list. And then Mayo at Jacksonville, but they seem to focus more on fatigue than neuro stuff. 9 Quote Link to comment Share on other sites More sharing options...
TheReader Posted October 8, 2021 Share Posted October 8, 2021 Praying they're able to find and refer her to good post-Covid/long-Covid care for this and that she recovers fully. I'm glad she has you. 1 Quote Link to comment Share on other sites More sharing options...
GoodGrief3 Posted October 8, 2021 Share Posted October 8, 2021 (edited) Look into Functional Neurological Disorder. It used to be called Conversion Disorder. My daughter developed very similar symptoms, seemingly out of the blue, a couple years ago. She went from a normal busy college student to someone requiring a note taker in class and additional time on tests. She had to give up playing music for a time. Poorly understood, but appears to be a stress reaction of sorts. It’s been seen with some newly vaxxed people too, but is probably less about Covid and more about the body’s stress in mounting an immune response. The FND Hope website is one place to start and there are a couple of Facebook groups. She will have to rule out every other possibility though before getting a diagnosis. In my daughter’s case, it meant a wait for a neurologist, multiple scans/labs, then evaluation by a movement disorder specialist. It’s a strange condition that presents in multiple ways, and I had never heard of it. Now I know it is relatively common. Probably far down the road, but we got help for my daughter at The Recovery Project in Michigan. Life changing. Edited October 9, 2021 by GoodGrief3 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 8, 2021 Author Share Posted October 8, 2021 27 minutes ago, GoodGrief3 said: Look into Functional Neurological Disorder. It used to be called Conversion Disorder. My daughter developed very similar symptoms, seemingly out of the blue, a couple years ago. She went from a normal busy college student to someone requiring a note taker in class and additional time on tests. She had to give up playing music for a time. Poorly understood, but appears to be a stress reaction of sorts. It’s been seen with some newly vaxxed people too, but is probably less about Covid and more about the body’s stress in mounting an immune response. The FND Hope website is one place to start and there are a couple of Facebook groups. She will have to rule out every other possibility though before getting a diagnosis. In my daughter’s case, it meant a wait for a neurologist, multiple scans/labs, then evaluation by a movement disorder specialist. It’s a strange condition that presents in multiple ways, and I had never heard of it. Now I know it is relatively common. Probably far down the road, but we got help for my daughter at The Recover Project in Michigan. Life changing. Yup, that's on the list I'm sure. she's been under a TON of stress, and then had Covid and was trying to care for two kids with Covid while sick herself and then work from home...it's a ton But they are definitely seeing movement disorders with Covid. so..yeah. Quote Link to comment Share on other sites More sharing options...
Mrs Tiggywinkle Posted October 8, 2021 Share Posted October 8, 2021 1 hour ago, ktgrok said: Yup, they think it is covid related. She does have loss of taste and smell which are also considered neurological. I'm hearing 3rd hand, and don't know if they referred her to a neurologist or will be, but if not I'll get her names of reccomended ones. I also am looking into post covid/long covid type clinics in my state. There is one in Lakeland that looks pretty great but has months long wait list. And then Mayo at Jacksonville, but they seem to focus more on fatigue than neuro stuff. Katie, it’s anecdotal definitely, but the last six weeks or so I’ve had several patients who had similar symptoms and recently had Covid. All were vaccinated and had a relatively easy time with Covid, but suddenly had neuro symptoms after essentially recovering. I honestly would assume an unknown Covid neuro issue vs a stroke that was missed. 3 2 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 8, 2021 Author Share Posted October 8, 2021 22 minutes ago, Mrs Tiggywinkle said: Katie, it’s anecdotal definitely, but the last six weeks or so I’ve had several patients who had similar symptoms and recently had Covid. All were vaccinated and had a relatively easy time with Covid, but suddenly had neuro symptoms after essentially recovering. I honestly would assume an unknown Covid neuro issue vs a stroke that was missed. That what I'm thinking. And looking back, while sick with Covid she had what to me sounds like a neuralgia - painful skin and sometimes pins and needles. So between those and loss of smell and taste, it is obvious she had neurological symptoms from covid even in the acute stage. Rest seems to help, and she got significantly worse after the steroids gave her insomnia and she went a whole night without sleeping. Nto that the lack of sleep caused it, but exacerbated it. And yeah, I'm finding more and more references to ataxia/termors/etc with Covid. Which makes sense - we know that strep, flu, and some other diseases can cause movement disorders. 3 Quote Link to comment Share on other sites More sharing options...
sheryl Posted October 9, 2021 Share Posted October 9, 2021 Katie, sorry to hear about your sister. I read a few of your posts only. Hope your sister's health is restored soon! Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted October 9, 2021 Share Posted October 9, 2021 Katie, I pray sis is better quickly and with no lasting issues. How's your mom doing? I imagine she's scared to death as all moms would be. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 9, 2021 Author Share Posted October 9, 2021 41 minutes ago, WildflowerMom said: Katie, I pray sis is better quickly and with no lasting issues. How's your mom doing? I imagine she's scared to death as all moms would be. Mom is tired, lol. She likely broke a rib a week ago doing chair yoga of all things (she has osteoporosis) and between that and her dog and my sister's dogs climbing on her and taking care of my nieces and worry she is exhausted. Thankfully, my sister is more steady now, and my parents felt okay leaving her with the kids and went back to their own bed for the night. Knowing it wasn't a stroke, and this may just be temporary is helpful. 15 Quote Link to comment Share on other sites More sharing options...
lauraw4321 Posted October 9, 2021 Share Posted October 9, 2021 How is your sister doing, Katie? Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 9, 2021 Author Share Posted October 9, 2021 Haven't talked to her today, mom and dad were going to be there during the day today and I'm on call for the evening/overnight if need be. She was getting around well and functioning as long as she moved slowly as of last night, able to converse with my oldest when he went by, albeit slowly, etc. 19 Quote Link to comment Share on other sites More sharing options...
Ditto Posted October 9, 2021 Share Posted October 9, 2021 Praying for her and your family. She is fortunate to have so much love and support. I hope she recovers fully soon. I swear Covid is the nightmare that just keeps on giving. I hate it! Quote Link to comment Share on other sites More sharing options...
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