This Video is misleading. You need to Change the Description or Delete the video. You are stating you have a "Medical" condition But you have Not Been Officially Diagnosed with said Medical Condition by a Professional Medical Doctor....you are self-diagnosing. Please explain how anyone should take this "journey" of yours Seriously? I see someone who is taking advantage to the Health care system and possibly wasting resources/appointments/drs time from those that need it more.
@@kerrysmiles She clearly states she has NOT officially been diagnosed by the Actual Dr. Now if/when she got a official diagnosis is when a video would have been more appropriate. 👍
AMAZING how ppl still take the time outta their day to come bully ppl behind a screen. If u dont care then dont watch. She has the report and put it right infront of you i mean the proof is there. She aint SELF diagnosing she is simply concerned with what her MEDICAL REPORT FROM A DOCTOR showed.
I’ve had 3 back surgeries.... definitely remember all this. I’m a single mom of 3... life has changed! 🥲 praying 🙏 that you have the best neurologist and neurosurgeon possible! Love and light! 💫
@@veranocarbajal1002 she is reading her image results off her chart,she hasn’t received her diagnosis from her doctor. She looked up possible causes on the Internet and picked the one she thought fit. Her explanation of her tests is hysterical. Like listening to a 6 yr old explain x-rays 😆
It's kinda scary getting older and things go wrong with our health. Everyone is different but it's hard when you have pain but from the outside you seem fine so you feel like people might judge you when your not feeling 100 ect. Thank you for sharing your story, this was really nice to hear(not that your in pain) but to realize I'm not alone in my health problems. Thank you for sharing your story hun❤️❤️❤️
Totally agree sweetie💯I suffer from chronic pain due to RSD and Back injuries due to a car accident My thoughts and prayers are with you💜Please know you are not alone🕊🙏💚
It goes back to no one can really know what someone is going through you can't fault people from not being able to understand your pain. But people should be respectful!
You are really freaking yourself out before seeing the doctor. I’ve had 15 back surgeries, and I can tell you, googling what the scan results say will do you no favors. You do not have a medical degree, so please wait until you go over results with a medical professional.
I have Syringomyelia (syrinx c-6) and Syringobulbia. For years I was told all my symptoms were related to anxiety (which yes I do have, because of how I physically feel) it wasn't until last March I was sent to the ER with body tremors, weakness and numbness that resulted in me being diagnosed. Unfortunately Syringomyelia is not well known and this can be difficult to navigate through diagnosis and treatments. Some days are better than others, just like other disorders and diseases the unpredictability is the scariest part. Keep track of your symptoms and find a neurologist who has experience with this, listen to your body and reach out to some FB support groups. Try and stay positive! Remember you aren't alone.
I remember when she went to the doctor and all those specialists on mtv and saying she felt like she had “spiddy senses” was wondering when that stopped.
I suffer with chronic pain daily!! Bulging discs pinching nieces down left leg. Sciatica,pinched nerves in my neck, tendonitis in shoulders, fibromyalgia,and neuropathy in both legs and feet 🐾,due to the diabetes.migraines, arthritis, thyroid disease and the list goes on!! I go to pain management monthly.i know pain all to well! Sorry 😔 for your struggles.may the drs. Find your answers soon. Stay well and safe!! Love you 💓
I am by no means an expert but you should look into breast implant illness. A lot of women are getting theirs removed due to crazy symptoms like pain, fatigue etc..
THIS. I have it too, born with it and wasn't diagnosed until I was 16 after months and months of appointments, scans, tests, etc because the doctors were trying to figure out what was wrong with me
@@megansnowwhite7662 it's on the MRI report. It's good she read about it with this condition as there's a lot of misinformation spread by physicians that aren't experts but are still Neurosurgeons.
You prob should have waited until your dr talked to you about it, instead of trying to be dr Google........ they only go to school for 9 yrs to be told by a layman what disorder they have lol.
@@LitLitterbox lol stfu leg humper, laymen is a term for someone with less experience then the other person you are referring to not calling someone a name, if you Google anything maybe you should Google that lol
Im sure your concerned but 1 huge thing I learned over the years never Google diagnose. Also if you had what you think you have they would've seen that with the dye test they did. If your brain was doing that they wouldve seen that on the scan. When you Google diagnose most times the people are wrong and they freak themselves out and put themselves through way more stress and worry then what they need to. Wait to hear from your Dr. No need to worry yourself when you don't even know what you need to be worried about.
Dude, they wouldn't have even needed the dye test. My son has it, had the surgery for it as a baby and is monitored yearly with MRI's. They've some growth of the bone, but not enough to be a problem at this point.
I was recently diagnosed with a syrinx as well. I'm still waiting for doctor's appointments to get more answers. Hopefully we both get answers soon. There are a couple of support groups on Facebook. Possibly on other social media platforms as well.
Hi Angi. I have one too in C5-C7 and waiting to do another complete MRI with contrast for the cervical spine. Do you remember the names of any of the support groups? Hope you are also coping well with your symptoms.
Hi, I have Syringomyelia as well. I also have Chiari Malformation. I definitely understand what you’re going through. It’s not fun and it’s just crippling sometimes.
I have chiari it sux. I'm older but have had it since diagnosed 25 years. I live with it daily no surgery yet. Good luck and read all you can on things
I suffered for years with crazy sysmtoms and after years I was diagnosed CHIARI MALFORMATION TYPE 1 WITH SYRINGOMYLIA and had to ha e emergency decompression surgery.Feel free to ask me anything at all....its no fun buy you are not alone my friend
I have this it is usually caused my cerebellum herniation Chiari ( key r e ) malformation and it would show up on a brain mri that is what you need done to be tested and you need a flow study to make sure you dont have csf blockage and testing for tethered cord as well... It can cause debilitating symptoms you might end up needing spinal and brain surgery if your symptoms get worse it can also make you paralyzed im on my 2nd brain surgery if you do have it your best bet is getting into a Chiari specialist alot of neurologists and neurosurgeons dont really know very much about it nor the major symptoms and nerve, brain , brainstem , and nervous system damage it can cause it can effect every function of your body over time if you dont get treatment i now have seizures, pass out and am bed bound most of time with debilitating csf pressure headaches and massive nerve pain, brainfog, neuropathy in my heads and Parkinson and MS like symptoms please get into the best knowledgeable specialist you can find and join support groups on Facebook as well as look on the Conquer Chiari, Chiari Bridges and Bobby Jones CSF and Syringomyelia websites they're get resources for information .
I have both chiari type 1 and srynx almost all the way down my back from the very top. Im around the same age too. 😅 the chiari community has fb groups that are a huge saving grace for asking questions, tips and tricks. Also thanks for the awareness about it we need more of that!
I have Chiari!! And also a form of spina bifida called tethered spinal cord with a Lipomyelomeningocele. I wasn’t diagnosed until I was 18 I’ve had 4 back surgeries and have yet to find a good Chiari doctor! It is very hard to get diagnosed because there aren’t many doctors who know a familiar with it and it also mimics other illnesses!
Where are you located? My Neurosurgeon has experience with it in Birmingham AL. He is a Neurologist and a Neurosurgeon. It’s DEFINITELY hard to find a good one!
Hey, I remember you from a long while back, welcome to the Chiari fam, it’s a messed up journey but with good support and pain management, all can be okay! I’ve had the surgery and I do not regret it! Also have EDS, So it’s a crazy ride!
If you had Chiari's, they would have found it in the MRI. I suffer with Syrinx and Chiari's and you wouldn't be so casual about it. I live in severe pain, loss of balance, vision problems, memory and talking issues and can't do ANYTHING I used to.
And I have Syringomyelia and there’s no reason she should freak out yet. She is a Mother and can’t afford to do so. As for your comments about Chiari yes, it would have been found on the MRI if they shot the base of her skull. If they just shot the spine then no they don’t know yet
@@deangelojeremitriusvickers6319 Stop being so ignorant. everyone is different, this rare disorder is very complex and causes many different symptoms. No one is the same, specially with this Neurological Disorder. Pub Med, NORD, support groups.
Completely disagree, ovc you're going to Google it. Yes the doc can tell you how far along you are etc but you can also gather your own information. If that was what Jenelle wanted to do to fully understand the biology of what's happening to her then that's completely her right! Stop being narky
Haha. Yeah, many people think like this. However, my kid once had a condition and the dr couldn’t figure out what it was. I ended up doing weeks of research and took my findings to him and he prescribed the medication that was recommended on google and it cured my kid. The dr said he would have NEVER known of this condition had it not been for us. He said that this has helped him to know what to look for in other kids if this ever happens to come up again. If you’re interested to know what it was, I can post that. But didn’t want to waste anyone’s time of no one was interested.
If she has a syrinx.....she has syringomyelia. And i know first hand that most doctors cant even pronounce it. Janelle it's said like sear-inks just so you feel better saying it.
I'm sorry, but at least you can afford to get all these tests. I'm in constant pain every single day and can't afford a doctor..haven't been in a decade.
You need to contact Dr. Jeffrey Greenfield in NYC. He is the leading Chiari and Syringomyelia specialist in the US. I have Chiari and Syringomyelia and there is a wealth of knowledge you need to know before having any surgeries. I’m happy to provide resources.
I’ve been diagnosed with and had the decompression surgery in 2018. Not fun! But my issues improved 90% with the surgery!!! I’d do it again in a heartbeat
Ohhh medical knowledge from janelle Evans. Just as an RN this condition is NOT deadly nor is it cancerous. Follow up with your PCP before you make some far fetched video about your MRI results.
I hope you feel better And stay safe during this COVID-19 pandemic I will pray for you and your family and if you have the time please do vlog of your family
A few times in the past I've done self diagnosis by way of the internet. I ended up really scaring myself thankfully So far it wasn't as bad as I thought. I hope you get the answers you need and feel better soon.
@@moec6862 just because someone dances doesnt mean they dont live in pain. So many people assume people are faking or lying if they do anything other than lay in bed. I live in chronic pain every day to the point where some days I dont want to be alive and try to put a smile on my face when I'm around people but people assume I'm fine when really I'm suffering. Dont judge a book by its cover. You wouldnt like it if someone did it to you
A lot of people dance that have chiari and syringomyelia. You're just ignorant of the condition and what it means. Everyone pushes through pain for joyful moments.
@@kerrysmiles exactly. People are so ignorant and judgemental and it drives me insane. If they lived with severe chronic pain maybe they would understand that people cant just lay in bed and wait to die. We still have to live our lives and deal with the pain. Just because someone dances or smiles or laughs doesnt mean they dont live in pain
Just trust your doctors! They’re trained to treat these types of conditions. I’m sure you’ll be fine. I have a bulging disc in my lower back due to degenerative disc disease and it sucks. I get weakness horribly bad and chronic pain as well. It all sucks!!!
You CAN’T always trust doctors when it comes to Syringomyelia. There is A LOT they don’t know about yet! There are a ton of unknowns if you have Syringomyelia without Chiari.
Chiari malformation, my son has that. But he also has Spina Bifida, so it kind of all goes together. Hopefully you get it figured out soon! It’s painful when untreated.
Chiari is pronounced Kee-yar-ee. I really hope you don’t have chiari malformation because the surgery recovery is a royal pain in the ass! Good luck J!
So sorry you have to go through this @Jenelle 😔 I know how scary and painful life is rt now due to this🥺Trust me🤦♀️But Please don't loose that beautiful smile and try to stay positive💜You've come so far and are 1 tough Cookie💯😉My thoughts and prayers are with you and your precious family🕊🙏❤
How is everything going with your family? I know my family truly misses watching you, sadly the show has gone so far down hill without you. We gave up watching it about half a season after you left. I'm surprised it's still even on
I know many w/ Chiari because it's common in the genetic disorder I have Ehlers-Danlos Syndrome. They're both debilitating with symptoms usually much earlier in life, but anything is possible. You're lucky to be so mobile as my friends & I are not. BTW an expert would see it in an upright MRI. Good luck.
I know how you feel I’ve got a thyroid condition I’m a single mother to 4 kids one who’s a baby and one who’s severely autistic it’s so hard having a medical condition and being a mom my thyroid is so under active some days it’s so hard to even get out of bed
I have the exact same symptoms and my body constantly shakes and jerks, it’s scary! Please keep us posted! I’ve done so many MRIs and they all come back normal, but something is clearly wrong. I feel so hopeless sometimes 😔
You need to see a neurosurgeon and not google. My son has syringgomelia and syrngobulbia. You cannot assume you have chiari and a brain mri will confirm or deny very quickly. Sadly, these conditions do not get the studies needed! I know of a few neuros that I would wholeheartedly trust, as I traveled all over for my son. Best of luck to you!
I am sorry this is happening to you. No shame or put down but please consider removing implants if you have them. Or any other things. In certain people implants can cause auto immune conditions plus regular stresses of life can be really hard. Again please no shade or anything about plastic surgery some people are completely fine others have gone forever without diagnosis finding out it is body reaction to implants. Best wishes for health. From experience being a mom with auto immune disease I totally get the fatigue and daily pain.❤
I have a herniated lower back disk (from pregnancy) and I’m always in so much pain. Getting older sucks and I’m 31. Wishing u the best and hope u get better soon💛
I'm sorry to hear that you've been diagnosed, but I promise it's not as scary as it seems when you're reading all of that stuff. It's all compiled together (the possible symptoms/outcomes), which can be... only SLIGHTLY horrifying 🙄 to read all at once. I was diagnosed about 15 years ago, right after my oldest was born. I was only 17. If you'd like to talk to me to calm your fears a little, I'm totally down. My syrinx is in T5-T8. If you don't wanna chat, then let me just go ahead and say that I'll keep you in my prayers, lady. It's gonna be okay 😘
Oh my Janelle! I hope it's just something simple fix and you're over thinking! If not I'll always be thinking of you I hope for the best! Love you so much!
I'm sorry your going thru this jenelle, I hope treatment wont have to be crazy like the one surgery you were showing. You explained all this pretty well, though I have to say. I hope you can get rid of your pain soon
This Video is misleading. You need to Change the Description or Delete the video.
You are stating you have a "Medical" condition But you have Not Been Officially Diagnosed with said Medical Condition by a Professional Medical Doctor....you are self-diagnosing.
Please explain how anyone should take this "journey" of yours Seriously? I see someone who is taking advantage to the Health care system and possibly wasting resources/appointments/drs time from those that need it more.
She's reading her MRI report you know the one written up by an actual medical doctor.
@@kerrysmiles She clearly states she has NOT officially been diagnosed by the Actual Dr. Now if/when she got a official diagnosis is when a video would have been more appropriate. 👍
This is so embarrassing to watch. It’s the weekend? You couldn’t wait until Monday to speak to your doctor before posting this and self diagnosing?
It's not self diagnosing the diagnosis was already on the MRI.
AMAZING how ppl still take the time outta their day to come bully ppl behind a screen. If u dont care then dont watch. She has the report and put it right infront of you i mean the proof is there. She aint SELF diagnosing she is simply concerned with what her MEDICAL REPORT FROM A DOCTOR showed.
I would say to consult with your doctor before jumping to film a RUclips video. DON’T GOOGLE.
anything for "content," Next JE will be vlogging about being constipated today
I’ve had 3 back surgeries.... definitely remember all this. I’m a single mom of 3... life has changed! 🥲 praying 🙏 that you have the best neurologist and neurosurgeon possible! Love and light! 💫
I feel like a better title for this would have been, “why not to google your medical issues and speak to a doctor.”
Thats what she did. Shes reading the report from her doctor. And explaining it to us. *slaps hand on chest* durrrrr
If I had all the things I thought I had googling my symptoms. I would have died years ago.
She claims all this but she obviously doesn’t even know.
@@veranocarbajal1002 she is reading her image results off her chart,she hasn’t received her diagnosis from her doctor. She looked up possible causes on the Internet and picked the one she thought fit. Her explanation of her tests is hysterical. Like listening to a 6 yr old explain x-rays 😆
@@TinaMay-rr6xi duh. Pretty sure a tech does them and gives them to your doctor to read.
Hence my original statement. 🤡
It's kinda scary getting older and things go wrong with our health. Everyone is different but it's hard when you have pain but from the outside you seem fine so you feel like people might judge you when your not feeling 100 ect. Thank you for sharing your story, this was really nice to hear(not that your in pain) but to realize I'm not alone in my health problems. Thank you for sharing your story hun❤️❤️❤️
I completely agree with you!
Totally agree sweetie💯I suffer from chronic pain due to RSD and Back injuries due to a car accident My thoughts and prayers are with you💜Please know you are not alone🕊🙏💚
It goes back to no one can really know what someone is going through you can't fault people from not being able to understand your pain. But people should be respectful!
I kinda regret this Post. I was a little harsh because I really do like her a lot. I also think she has had some diagnosis recently. So I Apokogize💙💙💙
You are really freaking yourself out before seeing the doctor. I’ve had 15 back surgeries, and I can tell you, googling what the scan results say will do you no favors. You do not have a medical degree, so please wait until you go over results with a medical professional.
I really thought this was a different video when reading the title. I was ready to finish the song lol. IYKYK
Me too 😂😂😂
lmao when it came to the title thats the only thing that popped up in my head. 😂😂😂
@@mandilee8029 sameee 😂
Haha, same! Look at the party girls in the comments lol🤣
I'm so glad I'm not alone! hahaha
hey girl,,, the quality of this video is amazing!
I have Syringomyelia (syrinx c-6) and Syringobulbia. For years I was told all my symptoms were related to anxiety (which yes I do have, because of how I physically feel) it wasn't until last March I was sent to the ER with body tremors, weakness and numbness that resulted in me being diagnosed. Unfortunately Syringomyelia is not well known and this can be difficult to navigate through diagnosis and treatments. Some days are better than others, just like other disorders and diseases the unpredictability is the scariest part. Keep track of your symptoms and find a neurologist who has experience with this, listen to your body and reach out to some FB support groups. Try and stay positive! Remember you aren't alone.
I remember when she went to the doctor and all those specialists on mtv and saying she felt like she had “spiddy senses” was wondering when that stopped.
Omg yes the “molecules in the air”
This too shall pass your strong and have gotten through so much. Be positive
I suffer with chronic pain daily!! Bulging discs pinching nieces down left leg. Sciatica,pinched nerves in my neck, tendonitis in shoulders, fibromyalgia,and neuropathy in both legs and feet 🐾,due to the diabetes.migraines, arthritis, thyroid disease and the list goes on!! I go to pain management monthly.i know pain all to well! Sorry 😔 for your struggles.may the drs. Find your answers soon. Stay well and safe!! Love you 💓
I am by no means an expert but you should look into breast implant illness. A lot of women are getting theirs removed due to crazy symptoms like pain, fatigue etc..
Her symptoms are all symptoms of syringomyelia
@@kerrysmiles exactly!! I’m a Chiarian and as soon as someone finds out I have implants.. they assume it’s the implants lol
@@shellybell1108 ugh sorry love
Not trying to be rude. Coming from a person with Chairi... go to a surgeon first before you freak yourself out 💜
THIS. I have it too, born with it and wasn't diagnosed until I was 16 after months and months of appointments, scans, tests, etc because the doctors were trying to figure out what was wrong with me
When somebody starts off something not trying to be rude they're always rude 😂
@@kerrysmiles not at all lol
I literally just said not to freak herself out if she doesn’t know yet
Absolutely agree! The internet and rabbit holes can be crazy!
@@megansnowwhite7662 it's on the MRI report. It's good she read about it with this condition as there's a lot of misinformation spread by physicians that aren't experts but are still Neurosurgeons.
Usually someone would speak to their trained MD and get an actual diagnosis before making a video using medical terms from your chart and Google. 🤷♀️
Haha right? I can't jump to conclusions but this is the list of things I have wrong with me and what is going to happen.
Dude what do u want to see her doctor papers lol.
you are terribly mean
I for sure wanna pray for you. I want you to rebuke every health issue that attacks your body.
You prob should have waited until your dr talked to you about it, instead of trying to be dr Google........ they only go to school for 9 yrs to be told by a layman what disorder they have lol.
Lmfao I tell my doc "soooo I Googled everything so what do you think?" 😭😭😭😭. but yes I agree. It's so hard not to tho! 😒
@@LitLitterbox lol stfu leg humper, laymen is a term for someone with less experience then the other person you are referring to not calling someone a name, if you Google anything maybe you should Google that lol
I'm going through the same situation that you are it's not easy at all you got this stay strong you're an amazing woman
Im sure your concerned but 1 huge thing I learned over the years never Google diagnose. Also if you had what you think you have they would've seen that with the dye test they did. If your brain was doing that they wouldve seen that on the scan. When you Google diagnose most times the people are wrong and they freak themselves out and put themselves through way more stress and worry then what they need to. Wait to hear from your Dr. No need to worry yourself when you don't even know what you need to be worried about.
Dude, they wouldn't have even needed the dye test. My son has it, had the surgery for it as a baby and is monitored yearly with MRI's. They've some growth of the bone, but not enough to be a problem at this point.
I was recently diagnosed with a syrinx as well. I'm still waiting for doctor's appointments to get more answers. Hopefully we both get answers soon.
There are a couple of support groups on Facebook. Possibly on other social media platforms as well.
Hi Angi. I have one too in C5-C7 and waiting to do another complete MRI with contrast for the cervical spine. Do you remember the names of any of the support groups? Hope you are also coping well with your symptoms.
Never look into google medical stuff without hearing a professional. It can be scary
Hi, I have Syringomyelia as well.
I also have Chiari Malformation.
I definitely understand what you’re going through. It’s not fun and it’s just crippling sometimes.
I have chiari it sux. I'm older but have had it since diagnosed 25 years. I live with it daily no surgery yet. Good luck and read all you can on things
Same...I was diagnosed 11 years ago when I was 16. No surgery yet, just pain and lots of different meds over the years
I suffered for years with crazy sysmtoms and after years I was diagnosed CHIARI MALFORMATION TYPE 1 WITH SYRINGOMYLIA and had to ha e emergency decompression surgery.Feel free to ask me anything at all....its no fun buy you are not alone my friend
I have the same thing. Syrinx from T5-T10. Sending love from South Africa!
I have chiari, I was diagnosed in 2016 and had the decompression surgery in April of 2017. I feel you momma stay strong!
I was decompressed 2017 also. Hope you are doing well!
I have this it is usually caused my cerebellum herniation Chiari ( key r e ) malformation and it would show up on a brain mri that is what you need done to be tested and you need a flow study to make sure you dont have csf blockage and testing for tethered cord as well... It can cause debilitating symptoms you might end up needing spinal and brain surgery if your symptoms get worse it can also make you paralyzed im on my 2nd brain surgery if you do have it your best bet is getting into a Chiari specialist alot of neurologists and neurosurgeons dont really know very much about it nor the major symptoms and nerve, brain , brainstem , and nervous system damage it can cause it can effect every function of your body over time if you dont get treatment i now have seizures, pass out and am bed bound most of time with debilitating csf pressure headaches and massive nerve pain, brainfog, neuropathy in my heads and Parkinson and MS like symptoms please get into the best knowledgeable specialist you can find and join support groups on Facebook as well as look on the Conquer Chiari, Chiari Bridges and Bobby Jones CSF and Syringomyelia websites they're get resources for information .
I have both chiari type 1 and srynx almost all the way down my back from the very top. Im around the same age too. 😅 the chiari community has fb groups that are a huge saving grace for asking questions, tips and tricks. Also thanks for the awareness about it we need more of that!
I have Chiari!! And also a form of spina bifida called tethered spinal cord with a Lipomyelomeningocele. I wasn’t diagnosed until I was 18 I’ve had 4 back surgeries and have yet to find a good Chiari doctor! It is very hard to get diagnosed because there aren’t many doctors who know a familiar with it and it also mimics other illnesses!
That’s wild!
Where are you located? My Neurosurgeon has experience with it in Birmingham AL. He is a Neurologist and a Neurosurgeon. It’s DEFINITELY hard to find a good one!
So sorry! 🙏I hope and pray for healing and answers for you mama🙏
Sending thoughts and prayers up for you and your family
Hey, I remember you from a long while back, welcome to the Chiari fam, it’s a messed up journey but with good support and pain management, all can be okay! I’ve had the surgery and I do not regret it! Also have EDS, So it’s a crazy ride!
I'm also a zebra. Such a fun ride indeed.
I'm not sure if she has an official diagnosis
Babe please stop panicking till u speak to the doctor put google down! I have the hand thing too think aging plays part xx
If you had Chiari's, they would have found it in the MRI. I suffer with Syrinx and Chiari's and you wouldn't be so casual about it. I live in severe pain, loss of balance, vision problems, memory and talking issues and can't do ANYTHING I used to.
And I have Syringomyelia and there’s no reason she should freak out yet. She is a Mother and can’t afford to do so.
As for your comments about Chiari yes, it would have been found on the MRI if they shot the base of her skull. If they just shot the spine then no they don’t know yet
@@deangelojeremitriusvickers6319 Stop being so ignorant. everyone is different, this rare disorder is very complex and causes many different symptoms. No one is the same, specially with this Neurological Disorder. Pub Med, NORD, support groups.
Will be praying for you !
I agree though with another comment I saw. google can make things sound so scary ! Don't fall down the rabbit hole .. wait til you talk to a doctor ♥️
Don’t Google things after reading your results. Just see what your doctor says. You’re getting ahead of yourself!
I know that, I said that in the video.
Completely disagree, ovc you're going to Google it. Yes the doc can tell you how far along you are etc but you can also gather your own information. If that was what Jenelle wanted to do to fully understand the biology of what's happening to her then that's completely her right! Stop being narky
Nope be and advocate for yourself drs basically google too. Some of them dont know about all conditions lol
Haha. Yeah, many people think like this. However, my kid once had a condition and the dr couldn’t figure out what it was. I ended up doing weeks of research and took my findings to him and he prescribed the medication that was recommended on google and it cured my kid. The dr said he would have NEVER known of this condition had it not been for us. He said that this has helped him to know what to look for in other kids if this ever happens to come up again. If you’re interested to know what it was, I can post that. But didn’t want to waste anyone’s time of no one was interested.
If she has a syrinx.....she has syringomyelia. And i know first hand that most doctors cant even pronounce it. Janelle it's said like sear-inks just so you feel better saying it.
I'm sorry, but at least you can afford to get all these tests. I'm in constant pain every single day and can't afford a doctor..haven't been in a decade.
You need to contact Dr. Jeffrey Greenfield in NYC. He is the leading Chiari and Syringomyelia specialist in the US. I have Chiari and Syringomyelia and there is a wealth of knowledge you need to know before having any surgeries. I’m happy to provide resources.
I’ve been diagnosed with and had the decompression surgery in 2018. Not fun! But my issues improved 90% with the surgery!!! I’d do it again in a heartbeat
Sending prayers your way jenelle💖
I’d like to see more of you all working the land, I think it’s super relevant right now.
Ohhh medical knowledge from janelle Evans. Just as an RN this condition is NOT deadly nor is it cancerous. Follow up with your PCP before you make some far fetched video about your MRI results.
Do you have the condition then shut up you have no clue what anyone is going through the doctors told me that this would cuz no pain I am in pain 24 7
I hope you feel better And stay safe during this COVID-19 pandemic I will pray for you and your family and if you have the time please do vlog of your family
Keep on it girl them babys need you in tiptop shape. All the best Jenelle xxoo
A few times in the past I've done self diagnosis by way of the internet. I ended up really scaring myself thankfully So far it wasn't as bad as I thought. I hope you get the answers you need and feel better soon.
She's lying
She dances all the time tik tok. Lol
@@moec6862 just because someone dances doesnt mean they dont live in pain. So many people assume people are faking or lying if they do anything other than lay in bed. I live in chronic pain every day to the point where some days I dont want to be alive and try to put a smile on my face when I'm around people but people assume I'm fine when really I'm suffering. Dont judge a book by its cover. You wouldnt like it if someone did it to you
A lot of people dance that have chiari and syringomyelia. You're just ignorant of the condition and what it means. Everyone pushes through pain for joyful moments.
@@moec6862 bully
@@kerrysmiles exactly. People are so ignorant and judgemental and it drives me insane. If they lived with severe chronic pain maybe they would understand that people cant just lay in bed and wait to die. We still have to live our lives and deal with the pain. Just because someone dances or smiles or laughs doesnt mean they dont live in pain
I’m sorry it sucks when your body is not cooperating with you.I hope you feel better soon and everything goes okay with fixing this problem
Just trust your doctors! They’re trained to treat these types of conditions. I’m sure you’ll be fine. I have a bulging disc in my lower back due to degenerative disc disease and it sucks. I get weakness horribly bad and chronic pain as well. It all sucks!!!
You CAN’T always trust doctors when it comes to Syringomyelia. There is A LOT they don’t know about yet! There are a ton of unknowns if you have Syringomyelia without Chiari.
Chiari malformation, my son has that. But he also has Spina Bifida, so it kind of all goes together. Hopefully you get it figured out soon! It’s painful when untreated.
I have Chiari Malformation too
I also have chiari
I have it and had horrific brain surgery for it.
I'm so sorry to hear this about your son and hope he's doing ok! I am still waiting on answers but thanks for understanding. 🥰
I have chiari malformation type 1
I have Chiari, Syringomyelia and many other chronic illnesses too.
Same here
Same same! I’m a patient advocate for our conditions!
Same.
Chiari is pronounced Kee-yar-ee. I really hope you don’t have chiari malformation because the surgery recovery is a royal pain in the ass! Good luck J!
You forgot an eyebrow
Really dude shut up
U forgot a brain
Fix it quick as you can while you are young- the recovery time increases exponentally as you age. Prayers young lady.
who let diane downs out.
Lots of prayers and positive vibes.
So sorry you have to go through this @Jenelle 😔 I know how scary and painful life is rt now due to this🥺Trust me🤦♀️But Please don't loose that beautiful smile and try to stay positive💜You've come so far and are 1 tough Cookie💯😉My thoughts and prayers are with you and your precious family🕊🙏❤
Can this be related to your Thyroid
How is everything going with your family? I know my family truly misses watching you, sadly the show has gone so far down hill without you. We gave up watching it about half a season after you left. I'm surprised it's still even on
Ahhhh yay you’re back ❤️ hope you’re doing okay
I'll pray for ya chic. Stay strong.
I’m dyinnggggg 🤣🤣 this gir googled crap and said she has a rare disorder and hasn’t even been told that by her doctor 😆 pillbilly
Yeah and it's a good thing she googled it because her doctor will likely not know much about it as well.
My friend had it she had to have the surgery, she is alot better still has her days but is loads better after having the surgeyx x
I had the surgery too but am unfortunately worse than I was before. The success rate for the surgery is 50/50
Brittney Stegmann Same. It’s so important to see a neurosurgeon who specializes in this surgery. 💜
I know many w/ Chiari because it's common in the genetic disorder I have Ehlers-Danlos Syndrome. They're both debilitating with symptoms usually much earlier in life, but anything is possible. You're lucky to be so mobile as my friends & I are not. BTW an expert would see it in an upright MRI. Good luck.
She looking for more pity!
*self diagnosed
Jenelle I hope that everything goes well with you and your family ❤️
Not your diagnosing yourself 😂😂😂
You’ll get through this girl. You’re strong health first! Projects don’t mean crap if you aren’t healthy
I know how you feel I’ve got a thyroid condition I’m a single mother to 4 kids one who’s a baby and one who’s severely autistic it’s so hard having a medical condition and being a mom my thyroid is so under active some days it’s so hard to even get out of bed
But you dance all the time on tik tok
Much love
Praying for you girl!!❤️❤️
It’s scary that she believes herself. This isn’t normal behavior.
Hope it gets better!!
I have the exact same symptoms and my body constantly shakes and jerks, it’s scary! Please keep us posted! I’ve done so many MRIs and they all come back normal, but something is clearly wrong. I feel so hopeless sometimes 😔
Big hugs Janelle hope you feel better soon
That explains all the issues you have been having for years.
Stay strong it's really hard when your going through this kind of stuff 💜💛💚💙❤
Hoping you feel better soon.
You need to see a neurosurgeon and not google. My son has syringgomelia and syrngobulbia. You cannot assume you have chiari and a brain mri will confirm or deny very quickly. Sadly, these conditions do not get the studies needed! I know of a few neuros that I would wholeheartedly trust, as I traveled all over for my son. Best of luck to you!
Very good advice as I have Syringomyelia only. Yes Chiari is very easily found with a MRI. Hope your son is doing ok. Roll Tide!😉
I have fibromialgia im in pain 24/7 i have 3 kids 11 8 and 18 months i have to pish through everyday and its so hard
I have it too with 4 kids one who’s a. Baby and one who’s severely autistic it’s so hard oh my god the back and shoulder pain
I’m so sorry 😢
You will continue being in my thoughts and prayers 🙏🏼.
Well. The good news is this doesn’t involve jell
Sending you good vibes! You will figure this out 🥰🥰❤️
It’s pronounced kee-ari malformation
Girl you haven’t even talked to your doctor
I am sorry this is happening to you. No shame or put down but please consider removing implants if you have them. Or any other things. In certain people implants can cause auto immune conditions plus regular stresses of life can be really hard. Again please no shade or anything about plastic surgery some people are completely fine others have gone forever without diagnosis finding out it is body reaction to implants. Best wishes for health. From experience being a mom with auto immune disease I totally get the fatigue and daily pain.❤
feel your pain...Docs dont listen...
Feel your pain. I have syringomyelia too. In my neck and back. It’s severely affected my whole life 💔.
I'm so sorry. I will pray for you. I will pray for Jesus to send a angel to you. Hope you get better soon
You shpuld get checked for colon cancer...that's how they found it in my 33 year old sister...back pain..just a tip...best of luck to ya'll.
I have a herniated lower back disk (from pregnancy) and I’m always in so much pain. Getting older sucks and I’m 31. Wishing u the best and hope u get better soon💛
I'm sorry to hear that you've been diagnosed, but I promise it's not as scary as it seems when you're reading all of that stuff. It's all compiled together (the possible symptoms/outcomes), which can be... only SLIGHTLY horrifying 🙄 to read all at once. I was diagnosed about 15 years ago, right after my oldest was born. I was only 17. If you'd like to talk to me to calm your fears a little, I'm totally down. My syrinx is in T5-T8. If you don't wanna chat, then let me just go ahead and say that I'll keep you in my prayers, lady. It's gonna be okay 😘
Oh my Janelle! I hope it's just something simple fix and you're over thinking! If not I'll always be thinking of you I hope for the best! Love you so much!
I hope you’re doing okay this sounds so painful 😭
I actually though this was the song....lol. I was about to jam.
Had that Nerve Study..Hope n pray you are doing well🙏
I'm sorry your going thru this jenelle, I hope treatment wont have to be crazy like the one surgery you were showing. You explained all this pretty well, though I have to say. I hope you can get rid of your pain soon
I truly hope the best. Your in my prayers. Be safe God bless 🙂