Very informative! As someone who is dealing with Sjogren's, I have experienced firsthand many of the systemic effects. Not only have I developed widespread joint and muscle pain, but I've also developed neuropathy, and was quite recently diagnosed with Pulmonary Arterial Hypertension associated with Sjogren's. Too few physician realized or recognized the serious systemic effects of Sjogren's.
It is. I was diagnosed almost 10 years ago. My rheumatologist put me on Plaquenil and told me nothing about natural methods or changing my eating habits. I was basically on my own. I searched on Google and found some things on RUclips. A friend introduced me to a homeopathic doctor and finally I got on the right track and started feeling better.
6:38 Girnta. Thank you for this information . How Sjodren's effects the brains white matter is really interesting to me. I'd really like to know how it affects the spine's vertebrae ? Does it weaken them to the point that they easily become fractured? Sjodren's seems to have the abilities of RA, especially with the attack and degradation of joints?
I was diagnosed with MS with neurophysiology studies and studies by another Neurologist, finding that everything was Central Nervous System. MRIs never showed anything, except the spinal one showed the arthritis (“degenerative disc disease”). I contacted the MS Society and they sent me literature on how some people do not show up on MRI. Somewhere within all this happening I was diagnosed with Sjogren’s Syndrome. No one ever told me it could affect the neurological system. (I do not want CNS studies, no spinal tap, I’m as non-invasive as I can be!) I know there is brain atrophy with MS, again I was not aware of this with Sjogren’s. It seems like misdiagnosis of these two would be likely. My walking/ balance/ cognitive ability etc. has all been affected. It makes me wonder. With cognitive problems and short-term memory problems, maybe I’ll forget about it!😂 Does make me wonder…..
It is well known that differential diagnosis with MS and Sjogren’s is tricky, and often bungled. I believe a search will reveal that. Maybe it was Johns Hopkins. There are risks bec MS meds can worsen Sjogren’s.
I am just recovering from Spinal Meningitis. The immunosuppressant Arava, lowered my immunity so much that i could not fight off a head cold. The head cold turned into Spinal Meningitis. Im better today after being in ICU, unconscious for about 2 days. Then a stay in hospital for a week. I was too weak to go home, so then i had to go to rehab learning how to walk again. Still needed 6 weeks of Physical Therapy after i was able to go home. Im alive today thanks to great medical care and i take supplements with eating anti-inflammatory foods.
I just had discs replaced in my cervical and they say I need 2 replacements in my lumbar I’m in pain from head to toe and my parents have different forms of rheumatoid arthritis
So sorry to hear of your troubles. I hope that you are getting multiple opinions regarding surgery and what type and procedures are suitable for you. Take care of yourself.
I'm in the UK. I have dry mouth, itchy and occasionally dry skin, muscular and large joint pain. GI issues, brain fog dry nose, swollen ankles,, parasthesia, difficulty sleeping, indigestion, occasional small joint pain. Rheumatology won't see me as PRC, ESR and ANA bloods all normal. GP says she'll treat my symptoms. She's sending me to the pain clinic. My mum has Sjogrens and PBC. My sister has Psoriatic Arthritis. I already have hypothyroidism. Should I be pushing for a rheumatology appointment?
Śledzę ten kanał. Dużo się dowiedziałam i dziękuję. Choruję na pierwotny Zespół Sjögrena od wczesnej młodości. Pół ciała drętwieje i boli (polineuropatia), ledwo chodzę przy balkoniku, suche oczy, suche usta, uczulenie na słońce itd. Czy można prosić o napisy do tego filmu, bym mogła lepiej zrozumieć neurologiczne powikłania?
Doctors here run bloodwork then tell you nothing wrong they never check anything you ever mention. I suffer from chronic dry eye mouth pain every where in my body and my mental is declining yet I’ve been on psychiatric drugs for years and they don’t work what’s wrong with me???
I have RA and the dry eye that comes with it. I have an eye doc that does an exam every 6 mos, I see my RA doc every 4. I have found that plant based foods hurt my joints. I try to eat meat most meals and it is helping. Basically an anti inflammitory diet. No sugar, no grains. Dr Ken Berrys channel has plenty of info. Meat based eliminates the triggers that cause anxiety etc.
@@TheFloatingflower I had to move away from my superior rheumatologist. When I see my new rheumatologist, I'm printing all my test results AND lists of what Dr Garnita recommends. Most doctors, even rheumatologists, minimize Sjogrens. Seek another doctor! Get multiple opinons!
What if you have metal and. Cant have. An MRI? 😢 i was diagnosed with sjogrens and classical ehlers danlos.. experiencing lots. Of tingling. In my left leg and muscle atrophy.
@@onelove132I also have EDS. Also all symptoms of Sjogren's but repeat labs and biopsies of salivary gland were negative. Have POTS dysautonomia, MCAS, hypothyroidism. Have positive ANA, positive ANTI-GQ1B antiganglioside antibodies, periventricular white matter lesions, myelopathy signs and symptoms, neuropathy, many neurologic symptoms, movement disorder/fystonis including palatal myoclonus, bilateral trigeminal neuralgia, occipital neuralgia, hemifacial spasm, and multiple cranial neuralgias, and severe cervical and lumbar DDD yet not no diagnosis on all the autoimmune and neurologic issues. Was told after MRI 10 years ago not MS but no answers either. Finally recently referred to geneticist for consult on EDS but the ones near me are not taking EDS patients.
Hum...they never tried the spinal tap but did use the lip biopsy. Though I have had plenty of spine injections due to C-Sections. Oh, I know in blood I do not have a positive ANA. Yet all of my body is affected by Sjogren's/Lupus, I am so confused because of so much overlapping. My nerves are so sensitive that any repetitive activity if pushed will alert my brain, causing it to stiffen up the surrounding muscles and will not release their hold until my pain level goes down to an acceptable level. It can take days, even months if I go too far. I also have repeated bursitis/tendonitis. It now will involve the entire leg or entire arm. Not just the wrist or forearm. You are so helpful, Doctor. It is so confusing to say what is causing these things to keep happening.
It sounds like you're going through a really tough time with all those overlapping symptoms. It's completely understandable to feel confused. Remember to keep communicating with your healthcare team; they can help clarify things and guide you through this process.
@@rheumatologistoncall Thank you Doctor. Five doctors. I am grateful you are so clear about symptoms and ways to deal with this. I think my doctors do not have much time for patients but they are good physicians. I've made it through so many flare-ups. As science advances I am positive more improvements to look forward to. Playing with genetics is important. I married someone with Northern European genes and mine Southern. Our three children developed allergies and asthma but only one needed glasses as a teen. None of them developed early arthritis, muscle pain, weak immunity. It will be interesting to see if any of my grandchildren develop symptoms. I think diet too is important. I have three generation of this illness. I hope we eliminated that mutant gene. I need to find a nutritionist and have an allergy test. As much as I dread taking more food out of my diet yet it could help with digestion, allergies.
I got diagnosed with rheumatoid arthritis(DMARDS) in 2016 based on increased RF and ANA negative since then i am suffering and now i have all symptons of sjogren's syndrome my rheumatalogist say i didnt have any problem as all my reports are negative now RF and ANA....i am suffering i dont know whom to consult do i need diagnosis for this as once i got diagnosed with rheumatoid arthritis back in 2016
I'm really sorry to hear about your struggles. It can be incredibly frustrating when symptoms persist and tests come back negative. I recommend seeking a second opinion from another rheumatologist or a specialist in autoimmune diseases who may provide more insight.
I have Sjogren's (SSA consistently positive, SSB positive once and since then not) & Celiac diseaseI am RF positive and ANA speckle. My ESR and CRP are always good. I was diagnosed with Small Fiber Neuropathy and some dysautonomia. My sfn came from clinical presentation- not biopsy confirmed. Is there something I'm missing by not having spinal fluid checked?
I have had the SFN biopsy which confirmed that I have a non-length dependent painful small fiber sensory neuropathy on the pathology report. The Neuro who reviewed it said it is likely a ganglionopathy and this diagnosis fit with my later neuropathy blood test panel done by a different Neuro. This panel result shows a positive ANTIGQ1B antiganglioside antibody. However, this Neuro had no idea why it was positive despite him having also reviewed my SFN biopsy report and my medical history. Very frustrating since he was supposedly one of the best neuropathy specialist neuros in large So Cal city neat my home.
me too since I was diagnosed oral lichen planus years ago and have had esophageal issues for many years. I was only told lichen planus 2as autoimmune. No coordination and communication between specialists causes so many problems.
If you're on steroids, your lichen planus can get out of control. Remember, the more you suppress your immune system, the more problems with various infections.
I have a question. I have Sjogrens. Dx through a skin biopsy. Would the tests that u mention here always be present? Or should they be done during a flare up?
What are the symptoms please. I have pain my temples, back of head, pressure, verigo, twitching ,etc I have Sjogrens SSA ro but dr says my neuropathic symptoms are not related to Sjogrens
How bad is this. I've been to Stanford and they can't figure me out.i was very young when I was told whatever it is I'll be in a wheelchair.im sixty and have 8 screws in my neck my brain fog is making me crazy some days I can't hardly see. Where in Oregon do I go for help. I can't get any meds for pain nothing gabapentin does not help. I've stopped eating processed foods. I'm so tired of hurting everyday
I’ve had three spinal taps done looking for illness and multiple epidural injections over my lifetime. The scariest and most painful thing about any procedure or injection into your spine is the WORDS spinal tap along with the anticipation. I’m being completely honest when I tell you I’ve had more painful IV’s.
I need your help, no one will listen to me. I was crippled at nine years old. With God's help I came out of it. I thought I was over it forever. Now in my sixties I have struggled with all these crazy symptoms, but my doctors won't listen. After years of my own research with your help and som other online doctors I know I have sjogrens syndrome. In 2012 was attacked by vestibular disorder, and disabled for a year. All my symptoms poit to sjogrens but no one will listen. I even watched Serina Williams interview on her sjogrens . Someday I hope to convince a doctor to help me. Thank for all your information.
Thank you for sharing your story with us. It takes a lot of courage to open up about such personal struggles, and I'm honored that my information could be of help to you.
Thank you Dr Girnita for covering Sjogren’s so extensively. As someone with Sjogren’s, I greatly appreciate your videos.
Thank you 🙏🏻 more will come
Very informative! As someone who is dealing with Sjogren's, I have experienced firsthand many of the systemic effects. Not only have I developed widespread joint and muscle pain, but I've also developed neuropathy, and was quite recently diagnosed with Pulmonary Arterial Hypertension associated with Sjogren's. Too few physician realized or recognized the serious systemic effects of Sjogren's.
Wow, Sjogren’s is starting to sound a lot worse than I realised - never been told most of the things that come up on your channel! Thank you.
Thanks for listening
It is. I was diagnosed almost 10 years ago. My rheumatologist put me on Plaquenil and told me nothing about natural methods or changing my eating habits. I was basically on my own. I searched on Google and found some things on RUclips. A friend introduced me to a homeopathic doctor and finally I got on the right track and started feeling better.
This was an excellent summary of an often dismissed or misunderstood topic.
6:38 Girnta. Thank you for this information
. How Sjodren's effects the brains
white matter is really interesting to me. I'd really like to know how it affects the spine's vertebrae ? Does it weaken them to the point that they easily become fractured? Sjodren's seems to have the abilities of RA, especially with the attack and degradation of joints?
Very nice and informative vlog 🌹💞
Glad you liked it
I was diagnosed with MS with neurophysiology studies and studies by another Neurologist, finding that everything was Central Nervous System. MRIs never showed anything, except the spinal one showed the arthritis (“degenerative disc disease”). I contacted the MS Society and they sent me literature on how some people do not show up on MRI. Somewhere within all this happening I was diagnosed with Sjogren’s Syndrome. No one ever told me it could affect the neurological system. (I do not want CNS studies, no spinal tap, I’m as non-invasive as I can be!) I know there is brain atrophy with MS, again I was not aware of this with Sjogren’s. It seems like misdiagnosis of these two would be likely. My walking/ balance/ cognitive ability etc. has all been affected. It makes me wonder. With cognitive problems and short-term memory problems, maybe I’ll forget about it!😂 Does make me wonder…..
Thank you for watching my videos!share it with others to help them!
It is well known that differential diagnosis with MS and Sjogren’s is tricky, and often bungled. I believe a search will reveal that. Maybe it was Johns Hopkins. There are risks bec MS meds can worsen Sjogren’s.
stay in nutritional ketosis. dont run your body on glucose
I would like to be evaluated by a doctor like you. I think I have this instead of fibromyalgia.
My website rheumatologistoncall.com/ you are welcomed to schedule an appointment!
@@rheumatologistoncall you don't take insurance?
I am just recovering from Spinal Meningitis. The immunosuppressant Arava, lowered my immunity so much that i could not fight off a head cold. The head cold turned into Spinal Meningitis. Im better today after being in ICU, unconscious for about 2 days. Then a stay in hospital for a week. I was too weak to go home, so then i had to go to rehab learning how to walk again. Still needed 6 weeks of Physical Therapy after i was able to go home. Im alive today thanks to great medical care and i take supplements with eating anti-inflammatory foods.
Thank you for watching my video, dont forget to subscribe to my channel for other videos!
I just had discs replaced in my cervical and they say I need 2 replacements in my lumbar I’m in pain from head to toe and my parents have different forms of rheumatoid arthritis
So sorry to hear of your troubles. I hope that you are getting multiple opinions regarding surgery and what type and procedures are suitable for you. Take care of yourself.
I'm in the UK. I have dry mouth, itchy and occasionally dry skin, muscular and large joint pain. GI issues, brain fog dry nose, swollen ankles,, parasthesia, difficulty sleeping, indigestion, occasional small joint pain.
Rheumatology won't see me as PRC, ESR and ANA bloods all normal. GP says she'll treat my symptoms. She's sending me to the pain clinic. My mum has Sjogrens and PBC. My sister has Psoriatic Arthritis. I already have hypothyroidism.
Should I be pushing for a rheumatology appointment?
Thank you for watching my videos!
Śledzę ten kanał. Dużo się dowiedziałam i dziękuję. Choruję na pierwotny Zespół Sjögrena od wczesnej młodości. Pół ciała drętwieje i boli (polineuropatia), ledwo chodzę przy balkoniku, suche oczy, suche usta, uczulenie na słońce itd. Czy można prosić o napisy do tego filmu, bym mogła lepiej zrozumieć neurologiczne powikłania?
Glad it was helpful! Thank you for watching my videos, please share them with others!
I’d suggest doing an internet search for each of the neuro signs she lists. Best to you.
Doctors here run bloodwork then tell you nothing wrong they never check anything you ever mention. I suffer from chronic dry eye mouth pain every where in my body and my mental is declining yet I’ve been on psychiatric drugs for years and they don’t work what’s wrong with me???
Best you seek advice of another doctor. Maybe the doctors that treated you earlier were not informed superwell?
I have RA and the dry eye that comes with it. I have an eye doc that does an exam every 6 mos, I see my RA doc every 4. I have found that plant based foods hurt my joints. I try to eat meat most meals and it is helping. Basically an anti inflammitory diet. No sugar, no grains. Dr Ken Berrys channel has plenty of info. Meat based eliminates the triggers that cause anxiety etc.
@@TheFloatingflower I had to move away from my superior rheumatologist. When I see my new rheumatologist, I'm printing all my test results AND lists of what Dr Garnita recommends. Most doctors, even rheumatologists, minimize Sjogrens. Seek another doctor! Get multiple opinons!
I agree with flower. Go for a second and even a third opinion.
I’ve seen 4 rheumatologists
What if you have metal and. Cant have. An MRI? 😢 i was diagnosed with sjogrens and classical ehlers danlos.. experiencing lots. Of tingling. In my left leg and muscle atrophy.
❤
@@onelove132I also have EDS. Also all symptoms of Sjogren's but repeat labs and biopsies of salivary gland were negative. Have POTS dysautonomia, MCAS, hypothyroidism. Have positive ANA, positive ANTI-GQ1B antiganglioside antibodies, periventricular white matter lesions, myelopathy signs and symptoms, neuropathy, many neurologic symptoms, movement disorder/fystonis including palatal myoclonus, bilateral trigeminal neuralgia, occipital neuralgia, hemifacial spasm, and multiple cranial neuralgias, and severe cervical and lumbar DDD yet not no diagnosis on all the autoimmune and neurologic issues. Was told after MRI 10 years ago not MS but no answers either. Finally recently referred to geneticist for consult on EDS but the ones near me are not taking EDS patients.
Hum...they never tried the spinal tap but did use the lip biopsy. Though I have had plenty of spine injections due to C-Sections. Oh, I know in blood I do not have a positive ANA. Yet all of my body is affected by Sjogren's/Lupus, I am so confused because of so much overlapping. My nerves are so sensitive that any repetitive activity if pushed will alert my brain, causing it to stiffen up the surrounding muscles and will not release their hold until my pain level goes down to an acceptable level. It can take days, even months if I go too far. I also have repeated bursitis/tendonitis. It now will involve the entire leg or entire arm. Not just the wrist or forearm. You are so helpful, Doctor. It is so confusing to say what is causing these things to keep happening.
It sounds like you're going through a really tough time with all those overlapping symptoms. It's completely understandable to feel confused. Remember to keep communicating with your healthcare team; they can help clarify things and guide you through this process.
@@rheumatologistoncall Thank you Doctor. Five doctors. I am grateful you are so clear about symptoms and ways to deal with this. I think my doctors do not have much time for patients but they are good physicians. I've made it through so many flare-ups. As science advances I am positive more improvements to look forward to.
Playing with genetics is important. I married someone with Northern European genes and mine Southern. Our three children developed allergies and asthma but only one needed glasses as a teen. None of them developed early arthritis, muscle pain, weak immunity. It will be interesting to see if any of my grandchildren develop symptoms. I think diet too is important. I have three generation of this illness. I hope we eliminated that mutant gene.
I need to find a nutritionist and have an allergy test. As much as I dread taking more food out of my diet yet it could help with digestion, allergies.
I have dry eyes, dry mouth, joint and muscle pain. But I also have balance issues. Can Sjorgen effect your balance? Thank you.
Yes it can
Thank you for the reply.
I got diagnosed with rheumatoid arthritis(DMARDS) in 2016 based on increased RF and ANA negative since then i am suffering and now i have all symptons of sjogren's syndrome my rheumatalogist say i didnt have any problem as all my reports are negative now RF and ANA....i am suffering i dont know whom to consult do i need diagnosis for this as once i got diagnosed with rheumatoid arthritis back in 2016
I'm really sorry to hear about your struggles. It can be incredibly frustrating when symptoms persist and tests come back negative. I recommend seeking a second opinion from another rheumatologist or a specialist in autoimmune diseases who may provide more insight.
How is neurosjogrens treated?
ruclips.net/video/ia3jGVzg3CY/видео.htmlsi=FagLMJ1uONPERyFq
ruclips.net/video/IhEw1BPbmCU/видео.htmlsi=EKSEGo4kgZKcuB3I
check my other videos! I do have one specific for neurosjogrens!
I have Sjogren's (SSA consistently positive, SSB positive once and since then not) & Celiac diseaseI am RF positive and ANA speckle. My ESR and CRP are always good. I was diagnosed with Small Fiber Neuropathy and some dysautonomia. My sfn came from clinical presentation- not biopsy confirmed. Is there something I'm missing by not having spinal fluid checked?
you need to be evaluated, I cant answer this question without knowing more...
Thank you for watching my videos!
I have had the SFN biopsy which confirmed that I have a non-length dependent painful small fiber sensory neuropathy on the pathology report. The Neuro who reviewed it said it is likely a ganglionopathy and this diagnosis fit with my later neuropathy blood test panel done by a different Neuro. This panel result shows a positive ANTIGQ1B antiganglioside antibody. However, this Neuro had no idea why it was positive despite him having also reviewed my SFN biopsy report and my medical history. Very frustrating since he was supposedly one of the best neuropathy specialist neuros in large So Cal city neat my home.
Have you seen LUCHEN Planus in the esophagus?
Oh, I would be interested in an answer to that, too.
me too since I was diagnosed oral lichen planus years ago and have had esophageal issues for many years. I was only told lichen planus 2as autoimmune. No coordination and communication between specialists causes so many problems.
If you're on steroids, your lichen planus can get out of control. Remember, the more you suppress your immune system, the more problems with various infections.
I have a question. I have Sjogrens. Dx through a skin biopsy. Would the tests that u mention here always be present? Or should they be done during a flare up?
Thank you for watching my videos!share it with others to help them!
What are the symptoms please. I have pain my temples, back of head, pressure, verigo, twitching ,etc
I have Sjogrens SSA ro but dr says my neuropathic symptoms are not related to Sjogrens
Thank you for watching my channel! Share the information with others in need!
@@rheumatologistoncall am in need, can you help me?
how long have you had the pressure?
@@sleepersix Oct 2021 since my covid shots
How bad is this. I've been to Stanford and they can't figure me out.i was very young when I was told whatever it is I'll be in a wheelchair.im sixty and have 8 screws in my neck my brain fog is making me crazy some days I can't hardly see. Where in Oregon do I go for help. I can't get any meds for pain nothing gabapentin does not help. I've stopped eating processed foods. I'm so tired of hurting everyday
get a second opinion.
I'm trying to get a diagnosis...it isnt going well
Thank you for watching my videos!please feel free to share the knowledge with others!
En français ? Merci !
Done! added !!Thank you for watching my videos!
WOW
I'm not letting my doctor do a spinal tap. Hell to the no
I completely understand, it may be a frightening procedure.
I’ve had three spinal taps done looking for illness and multiple epidural injections over my lifetime. The scariest and most painful thing about any procedure or injection into your spine is the WORDS spinal tap along with the anticipation. I’m being completely honest when I tell you I’ve had more painful IV’s.
I need your help, no one will listen to me. I was crippled at nine years old. With God's help I came out of it. I thought I was over it forever. Now in my sixties I have struggled with all these crazy symptoms, but my doctors won't listen. After years of my own research with your help and som other online doctors I know I have sjogrens syndrome. In 2012 was attacked by vestibular disorder, and disabled for a year. All my symptoms poit to sjogrens but no one will listen. I even watched Serina Williams interview on her sjogrens . Someday I hope to convince a doctor to help me. Thank for all your information.
Thank you for sharing your story with us. It takes a lot of courage to open up about such personal struggles, and I'm honored that my information could be of help to you.