A Day in the Life of a Syringomyelia Patient
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- Опубликовано: 6 окт 2024
- Beth Nguyen, RN, is a patient with syringomyelia, a rare disease disease in which cysts form inside the spinal cord. These cysts lead to multiple symptoms that impacts the person's ability to walk, breath, digest, etc. In this interview at NORD Rare Disease and Orphan Drug Breakthrough Summit, she describes what the disease has done to her quality of life and how she is working hard to keep the disease from defining her.
For more information, visit www.wstfcure.org
This was so reassuring to watch. I was recently told I had syringomyelia on an MRI of my thoracic spine. That was over a month ago. I've been put on a waiting list and told to "just get on with life". I have so many of the symptoms you described and I feel much better knowing it isn't just me.
Thank you Beth!! For drawing attention to our battle xxx Stay strong Mumma you got this ❤
Aww Beth I have it too and dealing with it for years misdiagnosed. I'm only 30 and feel 90 and on so many prescriptions. I am so sorry. I love you for talking about this!!! Some many people haven't ever heard of this disease. You are my hero. I love you and your strength!!!!!
Hello dear fellow patient. These days I had been diagnosed with syryngomyelia and also I was misdiagnosed for years... Is there any possibility to cure this disease? Or at least improve symptoms? Thank you very much
You’re really making me look forward to my future.. (19 years, diagnosed with ICD-10 G95.0 in august)
@@777STEFANDANKO hey! Sorry I never saw this reply lol. How are you feeling?? I hope you are managing ok...i know its really tough. As far as I know there isn't a cure. Maybe once enough rich people get it???? I did get some relief with the use of a neurostimulator. Even with that and my meds, I struggle a lot. You can stabilize and not get worse or it can get worse. Only way to keep an eye on it, is log your symptoms and get routine mris done. I do have other back issues and an undiagnosed auto inflammatory disease. At this point, I am going to do genetic testing to get a betger understanding cause many people with auto immune issues have difficulty getting diagnosed quickly and correctly.
@@빵-e5x im sorry =/. I broke my neck at 19 and the doctors missed it so I healed all messed up. It lead to the syrinx and to this day doctors would keep me in that category of its fibromyalgia....but because I had to fix my MRI machine, I went in and the radiologist told me to stay 😅. And that is how I found out....i knew doctors were wrong but they don't like complicated cases a lot.
I to have syringomyelia, I've been dealing with it since 1992, that's when I had my first shunt surgery. They should have a Syringomyelia/spinal cord injuries RUclips channel.
You really made a difference to me . I always remember you years later. I have respect for you girl ...love to you .
Oh my heart goes to you ❤️ my doctors think i’m faking even though my mri showed low lying cerebellum tonsils. i have fibromyalgia and now they think ms. but my symptoms are horrible. i told the doctors i’m gonna end up in a wheelchair because my legs don’t work right. maybe they’ll listen if i crawl into their office. God bless you for your courage and positive attitude 🙏💜😘
Boy would I LOVE to talk to you. This was just found on my cervical MRI. Also dx fibro - they tried the MS dx on me too. I guess this is it. I just found out today. I'm really scared & on hour 4 of trying to inform myself. I haven't been able to walk without my knees feeling like they're breaking for a year now. My doctor, even after seeing the MRI, bulges & herniations; followed by my asking what a syrnx was (mentioned on the MRI at C6-T1) then stops and another at T4.....he called me "crazy." Then recommended I see a psychiatrist & a Neurosurgeon. I have zero legitimate medical help. This thanks to the pandemic & losing my almost whole life GP. I'm scared & your reply, it just sounded so much like what's been thrown at me. I have no idea what's actually happening & what to expect. Google will only take you so far. Anyway, sorry for the long reply. I guess I just needed somewhere to put this 💙 I wonder if you were ever able to find real help. I hope so ❤️❤️
@Rebecca N into the spinal cord? OMG I can't handle any of this! I'm so scared
@@nyrhockeychick4life655 they can put the contrast through an iv too, that is what I had. Have you got a chairi malformation?
@Rebecca N unfortunately I was diagnosed WRONGFULLY with epilepsy aswell and it’s so dangerous I had to take medication for it even though I swore I didn’t have it the medicine side effects were so bad my anger was out of control i through a lounge over I stabbed my brother with a fork i through a tub of clay at the tyles and much more I don’t remember the rest but it was bad!
@Rebecca N I hope everything goes well darlin
You are an inspiration Beth. ❤️
God bless her I struggle with it too especially hard when you have kids. My heart goes out to her. May God help.us all
I pray for you daily and am so thankful for you. You have helped educate so many of us and the medical community, Thank you so much!
What a brave woman. Keep your head up and keep going. Thank you for the video
all the love and support from the bottom of my heart to you and to all sufferer . i can see your strength in persuing good life as a mommy , best mummy .
I can't walk anymore I was diagnosed 20+ years ago after a car accident I had overcome but then started regressing instead of progress and now I am finding out it's a very hard life and doctors don't understand what to do unless you find a very good Dr that cares god bless you ❤️
Hi I have syringomyelia in c5 to t1 discovered in mri almost 3 year ago. Where is the localisation of ur syringomyelia ? Do u stop to walk progressive ? or its fast?
I was diagnosed with syringomyelia in 1992. We should start a RUclips channel for people's like us.
Yes, I run into doctors very ignorant about my illness.
@@vaulpi mine is on the T1 and T2 lumbar
@@vaulpi how is your syrinx now please tell???
I was just diagnosed with Syringomyelia I started falling breaking bones concussions loss of feeling in legs horrible horrible pain. I now have an aide that comes everyday to care for me and a nurse stops in once a week. I use a walker polio crutches and a wheel chair. I spend 85% of my life is in my hospital bed. I have lost family members and friends cause I can’t be the mom I once was.
I also have sleep paralysis as night terrors so I can’t even sleep and get away from it for a minute. I have body temperature problems have my body will be ice cold and the other half of my body will be sweating I also have liver disease kidney disease bladder disease they are going to do surgery at this time but they are going to keep an eye on it I also have scoliosis...Again thank you so much for speaking about this could you tell me the groups you talk to about this? God Bless and keeping you in my prayers ❤️
Keep strong, its all part of the plan God has for us.
Strong people like you becomes inspiration for others.
I have syringomyelia, I was diagnosed in 1992. They should have a RUclips channel for people's like us.
Wow, thank you for sharing. I never even knew this community existed. I have been on this journey for going on 4 years and felt so alone
My brother have same problem syringomyelia , can you advise me it will improve after spine surgery or not.
I am doctor myself 4 years back I had disc herniation and i was treated for that, later my symptoms were not coordinating my injury. So I went through series of tests and found out I have PTS at cervical region. I have all the symptoms now I am living with this. I have moderate symptom but I am dealing strongly. In between done two masters to make myself busy, work and home. Somedays good and somedays are bad, my doctor says I should speak and give inspiration to other how I am tackling with this with work. Hope everyone feels better though its very hard but positive attitude can breaks odds. Be positive 👍😊
I was about to say....you still work? Aren't you basically in searing agony all the time? Maybe that's the herniations I've got going & numbness, lack of sleep etc. do you forget things frequently? Are you exhausted? Sorry I'm hours new with this being found :( it's encouraging to hear you can still achieve so much. I needed to hear this right now, so thank you ❤️❤️
@@nyrhockeychick4life655 yes all the time pain but I learnt during my pain management therapy how to divert thoughts. Although my disc issues are treated and series of physiotherapy I have gone through to strengthen my back muscles. These issues are one side but family is my top priority so I can't stop working. Work is best way to distract negative thoughts and routine changes my moods. I tackles everything with proper strategic manner. Hopefully I have given you answer.
@@nyrhockeychick4life655 Hi, I've thought I've had syringomyelia and or chiari for a wile now. I've yet to have an official diagnosis, only brain MRI has been done. The symptoms I've experienced don't match the extremes mentioned in this comment section, but they've affected me mentally, A LOT. My memory has become terrible, and I'm plagued with head sensations/headaches, and neck spasms. The best way I can describe my state is like being in another dimension, partially asleep. I also have been completely sapped of my energy and can barely even work out (which I've always been adamant about, used to have 2 hour gym days)
The brain MRI report cited "low lying cerebellar tonsils" /: Anyways, hope everything has been well for you recently. Good luck on recovery.
@@nordic8884 Did you go for a spinal MRI yet?
I dont know actually mam but i have gone thtough this same issue..i got a PTS after a cervical herniation …i have chronic pain i thought my syrinx is causing it ..my doc said after the herniation i got a scar tissue on the canal near the syrinx it happens to many people who have heriniated disc without syrinx also… so we have to deal with the chronic pain.. with tons of pain killers.syrinx have nothing to do with this pain unless the syrinx is huge…
I have the same thing and I’m only 23 as well as chiari malformation type 1 and it’s hard waking up every day or going day by day constantly in pain and feeling weak most days and not have people truly understand but I try and stay positive because my mother has both as well so I have to keep a brave face
@@aimeehewitt4470 How are you now?
I've been dealing with syringomyelia since 1992 they should have a RUclips channel for people like us.
Yes, many people don't understand because we often look perfectly healthy to the naked eye
You are inspiring and thank you for sharing. I have been struggling and this has given me fresh perspective, thank you!
Bless your little brave heart. I have a chiari malformation triggered from NF2. The weight of my tumors triggered it. I'm still not sure how we are going to tacked all this yet but I'm greatful for stories like this. Thank you, Beth. I will pray for your healing. My neighbor beat MS through prayer and positive thinking while she was already suffering with kidney failure and getting hospice visits. It can be done!!
I have syringomyelia, we should start a RUclips channel for people's with spinal cord injuries and diseases.
@@woundedbear64 I actually had surgery and it took care of the spinal fluid flow issues but now I’m dealing with other issues.
Thank You for telling your Story. I don’t know who the People were in the Background, but they were very Rude!!! I hope you get better. I’m suffering the same things.❤️
Thank you for being positive. I've had syringomyelia for long time but now becoming symptomatic. Stay strong. Thanks for sharing.
So r u alright now? Did you do surgery or not yet? From when you have syringomyelia? R u working?
You have had any surgery? How are you doing now? I know this is stupid question?
@@homemagar3670 it’s not a stupid question. You’re not alone
How many years did it take before you became symptomatic? Also how did you know you had it if you weren’t symptomatic? (Sorry for asking personal questions, but I’m so scared and trying to find answers)
@@Randomhumaan hello how are you doing? How is your symptoms now can i get your face book id or something email id i have joined syringomyelia group in Facebook there is lots of people suffering from syringomyelia you can join also
You are so brave.
Im there with you. But im a paraplegic now. The pain is terrible. Gojng in for a second shunt here in a week or 2 at the T2-3 right above the broken, fused T4. Thanks. Bless you
Terry Johnson I am so sorry. I have never met or gotten to talk to someone else who has has syringomyelia. I really pray your surgery was successful!! so many times they are not. I wish you nothing but the best and wish you all the support and love ❤
was it the syrinx or the surgery that left u paralyzed?
My MRI results came back last week found one by my t2 and t3. I'm a bit nervous about this....
@@Learnguitartoday you asked an important question for people considering the pros and cons of surgery. I hope OP responds
I love your attitude
I have syringomyelia as well. I’ve had it for going on 8 years now. I can’t begin to tell you how difficult and painful a journey it’s been for me. Even as I lay in bed and type this, I am in pain in my legs. I’m also unable to bend at the knees. Don’t even get me started on the bowel & bladder incontinence. Aside from the pain and stiffness, that’s the worst part. You are not alone Beth!
I to have syringomyelia, I got my first shunt in 1992. We should start a RUclips channel for spinal cord injuries and diseases.
Do you guys feel nerve pain?
@@NoSurrender1700 All the time!
@@cayennegeorge1906 Can you explain to me how it feels?
@@NoSurrender1700 The nerve pain pretty much feels like my legs are on fire. If not that, I have this overwhelming aching sensation all throughout my legs. It sucks!
Good for you. Keep inspiring!
I have this also c6-c7, migrains are horrible, spasms in hands and legs feels like being shocked with electricity. Numb fingers and toes, when i stand up from Seating i have to do it slow feels like im going to pass out. Just push past it and enjoy life.
I have mine in the same place.
I have same thing I just found out about mine these year and I had surgery now I’m recovering from my surgery
Which surgery you did? Did you shunt or not?
Big hug to you 🤗
I am suffering of the same issue and going to be seen by a neurologist soon, I hope it won't get worse 😢
How are you now?
I've been dealing with syringomyelia since 1992. We should start a RUclips channel for people's like us.
Do you feel nerve pain?
I’m right there with ya…syringo is hell and I battle it everyday too….
God bless you♥️♥️♥️
i have Syringomyelia too..i'm 13 years old i don't have it as bad as you though be strong
I’m 16 and I have it in my spine but I don’t have any symptoms at all that I know of. My doctors diagnosed it about 3 years ago and now I only have to get a check up once in a while to see if the cavity gets bigger.
@@Barracuda101 Hi, sorry to hear about that just glad you don't have symptoms it's very painful i'm 15 now well will be in December
Luke WolfyBlue I’m really sorry to hear about that. I’ve had this for a while now but never realized how other people suffer so much from this. Im so grateful that it’s never affected my life really. If you don’t mind I’d like to know how you got diagnosed with it.
@@Barracuda101 kinda hard to remember I was only like 9 or 10 when I was diagnosed so I would have to ask my mom because they did alot of testing on me, but I think it was the MRI
@@Barracuda101 you are very lucky
I have been dealing with syringomyelia for over 30 years now. I got my first shunt back in Chicago at Rush St Likes in 1992, then my next shunt at the Mayo clinic in 2005, and I think I may need another shunt in my lumbar area. I go tomato every Autumn for a M.R.I. scan, but things are acting weird again, so I'll most likely need another shunt. I'm 57 and tired of surgeries, but I won't give up.
Omg, I wasn't even aware that it has been around that long. I just got diagnosed in 2019
@@nicolenelson6111 what treatment you take for it? My brother have same problem.
Sientists recently discovered a new organ in our body.
I think is called Interstitium, the organ is a bodywide network of interconnected, fluid-filled compartments supported by a meshwork of strong, flexible proteins. The question is, is this liquid the same as the syrinx?
If so i believe this may change the way the doctors treat this problem, i mean there may be a way to suck out that liquid from the spinal cord without the need of operation since there may be already capilar connections between the spinal cord and the souranding area.
I appreciate u for ur confident...
None should not suffer with these type of prob..
Actually I have diagnosed with syringomyelia for past 1.7yrs ago... affected area c2-d6/d7.....
I started loss feeling in my hand and my both the legs below knee.... My Dr. Suggest me NO for surgery.. as a mother of 6yr kid I never ever loose my confident at any cost....
Now am 70% recovered and am fine, i got back my sensation in legs n hands.... Thank god
Now am feeling better... soon I'll be alright
I trust soon I'll be fine 100%
How did you treat it
@@rizwansa300 i took Ayurvedha treatment in Kerala state India... I stayed there for 20days and they asked me to hav regular medicine for a year and regular chkup 1ce a month for a year ..
Where did you take the treatment in keeala which ayurvedic hospital…was your syrinx small or big what was your symptoms please reply..
@@sibikumaransiva544 did your syrinx shrink after the treatment??
@@sibikumaransiva544 syringomyelia alone or you have any other conditions ??
Bless you sister . Chiari life is a struggle few can understand.
Wishing you the best ❤️ keep going
I have syringmyelia x 3 totalling 20cm AND a trigeminal schwannoma which is the size of a golf ball but has many tentacles
Had no symptoms only picked after being assaulted at work as a nurse
My work were not supporting only judgemental
Im the only one in ,y state with these two conditions together
More power to you ❤
Hang in there! Hope your doing well
She's brave and beautiful
I get treated as if I'm a junky when I walk into the doctors office and get mad af when they dont give me anything strong enough to manage the pain because nobody can relate to how bad the pain is because I look physically healthy and thanks to the privileged junkies they get real pain meds and people who genuinely need it get treated as if they're trying to get high I've been dealing with this disease for 2 years with no answers and without money in America you might as well purchase a casket and tombstone because it's cheaper than actually getting help doctors couldn't figure out what was wrong with me or they just wanted to drag it out as much possible in order to juice my coverage with unnecessary tests yet sitting back watching my health and my job deteriorate now I have no job and no money for surgery thank you America👍👍👍
Agreed! We have been robbed of our pain being managed! In this day and age no one should suffer. But we are!! I have CM that caused cysts on my spine, they think ibuprofen will take care of the pain, 🤣 I can barely walk, but yeah let’s do over the counter meds!!! Fucking junkies did ruin it.
How are you doing now? You’re not alone. I also am frustrated with America’s healthcare system
I can relate, I've been dealing with syringomyelia since 1992 and pain is a major issue.
Hi, I know right they suck at providing proper medication to help manage pain and prevent further nerve damage. But there was this one doctor that prescribed w strong medication used by one drug addicts! I took it for the first couple of times and then decided to quit it completely, it felt like I am high.. it did no good to my brain so I decided to quit it in fear of addiction. Guess what? Even though I laughed a lot and felt light and high, the pain was still there, it did not manage the pain lol! So u are not missing out on anything.
I just got diagnosed, but the doctor said it's not bad and I shouldn't worry about it, but I'm not sure. I'm 12 so I don't know if I'll need surgery. I'm going to see a neurosurgeon but I'm really scared. What do you guys think?
Write down your symptoms if you have any explain it all tangling feeling any pain anything out of the ordinary
@@the12thmeal15 I will! Thanks for the reply! ❤
Hey, how are you...did your doctor explain things to you?
I have syringomyelia between c6-c7 and 2 mm in diameter. My symptoms are tingling of fingers, scalp falling asleep, left foot swelling sometimes, constant pain in neck and shoulders. It's strange how everyone that has it seems to have different symptoms.
Wait wth I have the same discs. A few more but C6 & C 7 really bad AND the same 2mm diameter. Same symptoms mostly, except scalp. I don't feel it so much in my shoulders, but my god, if I walk more than an hour or so my knees are breaking. They were swelling too, like your foot. Sleeping is a nice time isn't it? I waited months for a recliner during the pandemic. Laying down is a definite no. There has to be some sort of correlation with these discs and the 2mm thing. I'm going to google now. Stay strong 💙💙💙 seriously, if I find something (I love to dig), I'll be back
How are you doing now? Did it get better/worse or stayed the same?
Uh this is in response to "sting", who probably wasn't asking me; but I'm doing much worse. MRI of the brain on 10/18 - "can't feel my feet", continues, plus searing back pain, numb left hand & completely & utterly in despair. Going broke. Exhausted, pain. Maybe it will just go away. It's randomly happened to people with post traumatic syrinx's. I hate that people look at me & be like; "you're totally fine. Take a walk or something." MY KNEES ARE BREAKING! Also had both knees shot up with cortisone. Best 9 days/nights of my life. That's over. Anyway goodnight 😭
@@nyrhockeychick4life655 I was asking you too and sad to hear that it got worse. I hope you feel better soon. I totally understand what you are going through and how people around you do not believe you including your GP. What's the size and location of your syrinx?
I guess they are doing the brain MRI as a precautionary measure and to see if anything is contributing to the syrinx formation. Anyways if you want to talk to someone who understands, please drop me your email here and I will message. Have a good day!
@@nyrhockeychick4life655 how are you doing now?is there any improvement.....
How come no surgery in her case? 😢
Madam iam also suffering from same probulammmm in starting stage....plese help me how to it quare
Did you have a syrinx to subarachnoid shunt installed?
My daughter's were both born with syringeomylia. One is 28 and the other is 33. They are having issues. We live in Canada and don't know who to contact in States to talk too. Would be greatly appreciated if you could recommend someone to talk too.
How can I get ahold of you???? I need an advocate. I believe I have SM as well and doctors are not finding anything and to get a test for whatever I have. Started falling in December to many times. Please can you help me?
Hi, the ONLY way at the moment is to get an MRI scan. The only way to see if a syrinx has formed in your spinal cord. A Radiologist doing an Mri is the only way to know for sure. It took me 7 years to get diagnosed. Good luck.😊
Hi, I am Shieda. I was recently diagnosed with syrinx. I am currently under medication which helps with the pain and pins and needles in my arms and legs. Recently I found that my left shoulder, left breast and left hip is stiff and I have extreme pain when I move it. Have you experienced the same? Is it also a symptom of syrinx?
I have multiple syrinx's, I was diagnosed with syringomyelia in 1992. They should have a RUclips channel for us.
@@woundedbear64 yes, definitely
yes these are my symptoms too. The pain in the hip is more intense than the rest. Neck and shoulder is horrible too and the entire left side of my body does not feel normal, it feels like pins and needles and like I am wearing a super tight rubber band around my arm. Could u please tell me what medication is helping u with this?
@Love 33 I am on Nurika, Tegretol, tramazac and synaleve for pain. I stopped my Physio treatments for now because it's to painful
Hi Beth, where is your syrinx located? Hope you dont mind me asking, I also have a large one all through out my thoracic spine and I have no idea how it got there
hi moonlight I started in 2002 with a t4-t9 syrinx..now its down to my sacrum,,,,they don't know how I got it either....I have a lot of neck pain....what is yours like? emigavin12 yahoo
@@tammyburdick3526 sorry I didn't get this notification. Mine was 13mm wide the last they seen it and it is getting worse, extending from C5 to T10 but thinner from T6 up. I just recently started getting a lot of chest nerve pain when i lift things or blow my nose. My bowels and bladder r almost useless but i manage the best way i can so far. I'm due for a shunt soon I think. Do you know of any specialists that deal with strictly this type of thing?
I have syrynx on my C6-c7 im so scarred that one day im no longer functional😭😭😭😭i have terrible pain around my shoulder blade and i loss my normal cervical cyrvature too..what are the exercices that arenr alllowed to this condition? My doctor seems to have not enough knwledge about these condition.he said a lot of people has it and with no serious problem..oh God please help us
@@remamamulay3673 how are you doing? My is c6-c7
My cyst is c5 to t1 but the diameter is 0,7 mm i really progressive difficulty for move.
Those that do not suffer from SM have no I do what the meaning of the word hell is!
Sorry you suffer too xxxx
I have a wising is my spine with spinal fluid build up. Nothing can be done I’m in constant pain and can not walk. There’s no cure.
Widening not wishing
I have syrinx in the upper dorsal spinal cord from D2 to D4 vertebral levels with T2 hyperintensity in the cord proximally upto D1 vertebral level due to presyrinx edema and myelomalacia changes.maximum thickness of syrinx at D3 vertebral level measures approximately 6mm anteroposteriorly and 5 mm transversely.subtle enhancement along rim of syrinx.Mild loss of volume of dorsal spinal cord at D6,D7 and C7, D1 levels. Is there any treatment for this...plz plzz suggest me
Do you mean The T2-T4? There are no D2-D4s.
Hola, tengo un shunt, tenía mucho líquido en la c7 hasta la c2, me operaron de emergencia, yo sufrí un ácido te de carro. Antes de la cirugía me aliviaban los masajes, pero solo era un alivio temporal, siempre estaba la molestia quemándome o “burning”. Les digo la cirugía te duermen totalmente y para la recuperación me dieron morfina en el hospital, chicos, ese medicamento daba una sensación de alivio chicos, era como si el medicamento iba directamente adonde me dolía, que era en la herida, se siente calientito y me dormía a los 3 minutos. Después de la cirugía, con meses después les digo k ya no me da ese “burning”, ahora se siente como k el hueso se me va a salir, y es tanto el dolor k quiero que me saquen el hueso, es como si me estuviesen dándole apuñaladas, y los masajes no los disfruto tanto como antes, es como si ya esa zona es sensible a masajes… les aconsejo que con el tiempo este fluido es muy peligroso pk el doctor no te podrá decir cada que tiempo este fluido aumenta; según me explicó mi doctor es que: puedo perder cualquier movilidad del cuerpo, pues para mi ya no hubo opción más k cirugía, mi esposo también tiene lo mismo, pero a el no le recomendaron cirugía pk es bien poco de fluido para el.
Consejo: después de la cirugía transportarte será muy doloroso del hospital a casa, les recomiendo que traten de ir en una ambulancia pk así podrás ir acostada y no sentada.
Anyone dealing with C6-C7 region Syrinx? Would love to connect.
I have a syrinx that almost fills my spinal cord,also two in my neck plus I have a Chari malformation type I.
I Have Been Diagnosed With Syrinx/Hydromellia At C6-C7, Would Love To Connect..
I was just diagnosed last week, my docs are acting like its not a big deal even though my legs, hands go numb at times and lots of my hot/cold sensation my backside is wrong
Omg! That’s exactly how I feel, I wear socks to always avoid my feet getting cold other wise my back will be in major pain .. my right leg is numb. Going in for my second surgery on spinal cord.
Same here
unfortunately same here i was diagnosed with msk kidney disease scoliosis raynauds phenomenon adhd ni pi was in car accident chronic back pain gerd ptsd i hope all is well bless all love all and all be healthy wealthy and wise
@@leoniamosaati5915 how is your syrinx now please tell???
@@stephaniesilva5912 how is your syrinx now please tell???
Hi just found out I have it. Can we talk
I found out 7/15/21 I'm new, but you can talk to me if you want. We can navigate this crazy nightmare together if you want to. FML I still can't believe this
I was diagnosed Dec 2019. I am willing to share and talk with you as well
@@nyrhockeychick4life655 I would love to hear more about how it impacts you and what symptoms have developed within your body
@@nicolenelson6111 you will see a pic of me in a turquoise looking shirt with long bark hair.
@@shana6125 I'm sorry confused how do I contact you? Do you have a social media like fb or Instagram
I was diagnosed with traumatic syringomyelia in 2010 - both cervical and thoracic. I have found treatments for this and I am currently "in remission". The WORST thing you can do with this condition is to listen to these inexperienced doctors. We all know they don't know much of what they're talking about but they will arrogantly exclaim your doomed future. I'm absolutely disgusted by the way my fellow warriors with SM have been treated by western medicine. The cure is not through your in-surance, it's through the in-ternal.
I am ridiculously willing to share my success to those willing to listen. ... but it's a hard "pill" to swallow - and the color is red. 🖖
I want to add that Beth is an incredibly hard working warrior and I'm so proud and thankful for the work she does educating the medical community about this condition; we know how much they need it.
Share away man! Don’t know why u just couldn’t have put how u got in remission in there ^^
TC it's interesting what you wrote. How did you find treatments for it and what do you mean by you are in remission?
Please share protocol
Please share, thanks
My mom has this
Maybe you should get off the Drugs and help her!!!
@@joeybobbie1 I'm literally not on drugs. Why are you having to put a comment that has nothing to fucking do with what I even commented you literally don't even know me bitch I work a full-time job every fucking day and pay my own bills so don't act like you know me.
@@joeybobbie1 oh I see it's because there's a weed plant on my picture if you weren't dumb you would know we'd is not even illegal where I live, so I just smoke weed I don't do drugs don't go trying to put other people down when you don't even know them
Hello mem kese ho
Can you normalise using medical terminology 🎉
Not at the moment yet.
My dream since I was a kid was being in the air force and I loved working out all my life..
And it's hard when I get in so much pain after being in activity,... I started getting paralyzed in my feet.. and I got scared of working out..
And I started getting teazed that I am lazy... I still do.. because people don't know much of the disease and I look relatively "healthy" so then I "must be fine"..
Me too, I work freight. I love working my coworkers are great my boss is great my pay is good(way better than temporary disability though) and people act like I want to not be there making a living. It's frustrating been dealing with it for 3 years and was just diagnosed 2 months ago.
Life’s insane, I just got diagnosed this and I’m kinda scared tbh.
I will more then likely get med boarded from the Air Force, which is disheartening because I planned on 20 years. The most maddening thing was I’ve had pain for 3 years. I was bitching and moaning to my doctors and like always they gave me Tylenol. Idk, this has been a weird year