I have RA and Sjogrens and it has been very interesting watching each disease rear its ugly head while trying to live and work. Every time a new symptom pops up, I jot it in a journal to and share with my Rheumatologist. This not only helps me to remember everything but we can discuss each issue and its importance. I find this works for me because sometimes I think I’m going to remember and then my brain empties during my appointment 😂 Thank you for your vlogs as the explanations help! Many blessings for continued health and healing!
When I try to explain my symptoms to the Drs who don't seem to understand neither do they want to learn further... They straight away recommend me to physmental dr. I'm glad I found this channel. It's really very interesting. Thank you
Dr. Girnita, I’m so glad I found you. Your videos tell me so many of the things I need to know. My rheumatologist is an excellent clinician, but he doesn’t talk to me and there’s so much I don’t understand. Through your posts I will get information that will help me through this difficult journey. One by one I will watch every one of your videos related to Sjogren’s and SLE. From the bottom of my heart, thank you.
I have neuro sjogren's with damage to my small fibers and dysautonomia. I started getting better taking b12, vitamin D, selenium, zinc, vitamin C and I stopped all gluten, dairy and processed foods. No more carbonated drinks, alcohol and a long etcetera. I got way better in a month and now I'm 3 months into the treatment and I also stoppes hydroxychloroquine and prednisone...
@@sunnyelizabeth2910 hii, I live in Chile, here my doctor gave me a prescription to be made in the pharmacy for my vitamin d. He told me to have it after eating with a spoon of olive oil, maybe that could help you too. As for the b12, I was having issues absorbing nutrients so he recommended the kirkland brand. That is fairly uncommon here, but I got it on the internet.
Thank you! I have a constellation of autoimmune symptoms and signs but not much blood work to "prove" or help diagnose specific disorders. The fatigue and pain with which I try to cope is definitely debilitating. Just hearing you carefully explain the reality of rheumatological disease is helpful to me as I can work towards accepting that I am not imaging symptoms or being lazy. Your excellence is inspiring! So few physicians choose to go into this specialty; you are making a great impact!
Excellent video. You are so immensely helpful. I appreciate you sharing your knowledge. I have not encountered a rheumatologist with as much knowledge of sjogrens as you. Thank you for all you do! Sending best wishes from Boston! 🤩
Thank you for this video. I wish I could see you. I have Sjogren's but I've lost the ability to properly use my left leg and upper arms. I've had 3 EMG's over the years that show nothing. I had a spinal tap that revealed high protein levels but nothing else. I also had a brain MRI that showed white matter. I am back on the merry go round with doctors. They have no idea what is going on with me. I've seen a neurologist that doesn't have a clue but is referring me to another neurologist for a second opinion. I would love to see you and let you examine me. If I need to travel, I will. I'm located in Mississippi.
Thank you again for all of your informative videos Doctor. They help fill in the gaps of the disease, and helps explain some things that you don't think of when you are at the doctor. And yes, multiple autoimmune diseases including Sjogren's.
Doctor I take good care of myself I don't smoke, drink alcohol, eat beef, pork, just chicken and fish. How do I combat multiple autoimmune disorders disorders that are attacking my body? On top of that I have fatty liver disease. I do have HLA B27 Gene marker for ankylosing spondylitis but it hasn't been active in 20 years. I got it into remission with diet change, herbs, and vitamins. I am not diabetic and I am very thin. Loss of muscle. Honestly I feel like I am dying
Me too. The small fiber neuropathy was causing horrible full body itching and skin burning to the point of near madness. I recently started low dose prednisone (1 mg per day) and finally I have relief.
I have RA and Sjogrens (rheumi not sure of dx, although have all symptoms but ssa snd ssb are only occasionally positive. In addition, I have Felty's Syndrome and fibromyalgia. My opthalmologist has diagnosed me with an an eye autoimmune condition. My eye dryness is severe and the oil glands along my upper and lower lid lashes are drying up and dying. He said theres a surgery that can be done where he can use a small tool to clean each duct out so the flow is returned. It costs over $1000 each eye and I'm on a disability income, still caring for my daughter on the autism spectrum also diagnosed with ADHD, cPTSD and severe OCD. I'm also diagnosed with type 2 diabetes. My opthalmologist has requested me to get a Bruder mask (heat it up in microwave, hold it on the closed eyelids for 15 minutes, then go massage the upper and lower lids in a way so the crud in the gland can get thinner (from the heat) and be pushed out. I'm supposed to do that twice daily. I just can't do that twice daily due to severe pain and mobility, as well as not having a microwave. My daughter takes lots of attention and I completely forgot to add this to my daily things to do. I have cataracts as well that need to be taken out, but unable to as yet due to the cost. Thank you for these videos. They are very helpful. I plan to ask my rheumatologist about some of these symptoms and tests.
Thank you for your Sjogren's series. It brings to light the serious systemic nature of Sjogren's. I suspect that I have some sort of autonomic dysfunction as I have GI issues, bladder issues, pain issues, tachycardia, temperature/sweating issues, and shortness of breath (not related to either my asthma or PAH). What kind of specialist deals with autonomic dysfunction? I plan to discuss these issues with my rheumatologist when I see her next week.
Thank you for these helpful videos! I have neuro Sjogrens, was diagnosed by lip biopsy at the Mayo Clinic. They are still suspecting bulbar ALS as well, but I am going to try Rituximab in addition to my prednisone, to see if that helps with cranial nerve inflammation. Acupuncture has helped somewhat, as has the prednisone. Most neurologists do not talk about the effects SS can have on the brain and spine, so thank you for this advocacy!
I wish you were my doctor 🙂 My doctors seem to dismiss all symptoms that you mentioned and concentrate on one symptom ! Honestly, I am in utter desoeration. Can't even see my GP due to the state of our NHS.
Continued.. I have sjodrens, I.C., hoshimotos disease, Fatty liver disease, (A.S. in remission. ) Chronic pain, fibromyalgia, migraines, tinnitus, kidney stone, gallstones, a cyst in one kidney. I've spent thousands on herbal remedies, multivitamins, just name it. I don't need meat Just Fish and Chicken once in awhile but I make protein drinks with fresh vegetables this has been going on for years I've never been overweight. I don't drink or smoke. I am a Christian and my faith keeps me strong unless the Lord is allowing this like Job in the Bible LOL
My doc isn’t interested in connecting the dots beyond RA. I have complained about so many of these symptoms and he brushes me off. Can you discuss ways we can bring up concerns to our Rhumatologist to respectfully insist they take us seriously?
I have an autoimmune disease since 2015, probably Sjögren because I have the Ro52 antibodies. I have a lot of neurological symptoms that align very well with what you listed in the video. I have a good rheumatologist, but she says that the neurological symptoms need to be diagnosed/treated by a neurologist. But no neurologist I have been to wants to treat me: one thought I am making it up. In a clinic where my rheumatologist sent me to they told me it's all psychosomatic. Because for the last couple of weeks I cannot walk properly anymore and have problems with eye movement, I got a referal from an eye doctor to a department at the university clinic that deals with eye movement disorder and dizziness (they are connected to the neurological department). I hope that works ...
Hello... I'm 65 and almost three years ago something happened to my health. I have always been weak and having problems but for whatever reason I went down hill bad. I'm getting my energy back slowly but it co es and goes. But I found these help me. Magnesium glycinate B12 drops B1 (thiamin HCI) and powered Goats Milk just starting a G I Essentials for gut health... these I got at Doctors Nutrition they talked to me over the phone and helped me with my questions about health for free.
Wow I was diagnosed with lupus and sjogren’s and small fiber neuropathy. I’ve been losing my vision with migraines since I was 16, and I’m 64 now. Lots of other symptoms that you mention including numbness in arms and legs due to cervical and lumbar stenosis. Meds are helping (Hydroxychloroquine, Gabapentin, low dose prednisone, and Benadryl).
Really appreciate your videos on this! I have lupus SLE. Sjogrens is my new diagnosis and I am doing a drop regimen everyday, several times a day. I am miserable lol
Haha. I was told by my neurologist about 2 years ago when they thought I had MS, because I have the brain lesions and on my spine. Ok at that time my then neurologist said you have SS. Ok my frist question was what is SS. No answer and he went on to say I should not worry about this. Well at the beginning of the MS diagnosis I could get around and still work. Now I'm almost bed bound but I can't pay a doctor to help me. I'm silently suffering yet no one is helping. Ok that's my rant of the day. I have SS and I am suffering. I have had these things way before I had thing else wrong with me. What I do know is that I have elevated white counts. I have a positive ANA, and I tested positive for SSA and SSB antibodies. Yet when I go to the doctor because I am a diabetic they shoo me off. Oh your dehydrated when talking about my dry skin, dry eyes that feel like I have sand in my eyes, and by God the dry mouth, I have to always have water with me just so I can swallow. I put lemons in my water to make my mouth water so it won't be so dry. My teeth started falling out about 5 years ago no tooth aches teeth just get loose and fall out. I went from a vibrant woman to being homebound. Life is just not worth living anymore.
There is always hope. Look for it. First and foremost Jesus is the salvation of our souls. He gives us hope in the midst of our suffering. I’m praying for you.
Had horible dry eyes 20yrs ago and 15 yrs ago but they said not Sjogrens, but 1 Dr dismissed and an eye Dr said problem with part of eye that puts out fat covering for eye. Did find if eat less foods with high oxalic acid was helpful. What does vasculitis or optic neuritis look like? Are some nutrients low in that sjogrens ?
I wish my dr s would watch this vid because they do not have A clue this has to be the most misunderstood condition in modern medicine or these dr s do not research the condition
After going to drs for a decade for some mysterious, progressive illness, I've given up. I have piles of abnormal labs, abnormal MRIs, pages and pages of symptoms. I was finally referred to a new rheumatologist, drove 2 hours to see him. He basically dismissed all the labs and scans and said its just fibromyalgia and "maybe" sjogrens and I should probably just take antidepressants 😩 the medical gaslighting has destroyed me. They will believe me when I drop dead I guess.
In 2011/2, my VA Neurologist told me all of my symptoms - dry eyes and peripheral neuropathy - are all due to Sjogrens. He told me my negative antibody tests did not prove I dont have it. He left the VA and since all other VA doctors have made sure that I don't get a Sjogrens diagnosis. I dont have dry mouth so they did the salivary and saliva tests to prove to me I neded to stop asking them about it. I dont have Diabetes, never come close to a positive test. I have had xrays, MRIs, CT scans for decades at VA. I have arthritis in my cervical and lumbar spune but not stenosis. VA cannot prove what causes my peripheral neuropathy or dry eyes. Although I do get the medicines I wouldosy likely get.
I'm just wondering if this disease isn't found and treated in time if it can lead to CML. I've been complaining to Dr's for years about all the different issues I've been having over the years and wondering why my blood work has always seem to come back really off! A few years ago they diagnosed me with CML which is a form of leukemia! Now I'm on a chemo pill for the rest of my life with side effects so bad I can't even function normally from day to day or hardly deal with the pain, depression, severe fatigue and anxiety. I don't mean to complain or sound ungrateful because I know it could always be worse than it is, truly I do. I'm just so tired of being tired and feeling like I'm a burden to my spouse now. I have no kind of life now and I just can't help feeling like it's because they didn't catch the problem before it became a much bigger problem!😢
Merhaba doktor hanım sjögren semdromu tüm vücutta titremeye sebep olur mu bütün vücudumda dinlenme titremesi var dil çene dahil birden 2 taraflı başladı sjögren parkinsona sebep olur mu? 24 yaşındayım
Do you also help with filling out patients disability forms if you find it suitable for patients? Fyi.. I see so many doctors but i feel like you listen...
Goodday dr. I have been diagnosed with RA , because I can't afford medical insurance I am juicing state hospital. Please can you tell me what to use for joint pains? Get traumadol, and paracetamol, and folic acid tablets. Does not help, please has alteritus in jip as we'll due to RA.😢
I use magnesium, vitamin D3, B12, cucurmin, alpha lipoic acid. It helps with my muscle/joint pain. You need to take for a few months for the effects to kick in
Hi Doctor, my current diagnosis is Sjogren, thyroiditis and Hepatitis B. I am asked to do some blood test and NCV. Is Sjogren life threatening? Thanks in advance for your reply.
@@rheumatologistoncall thanks for your response and words to uplift my spirits, I really appreciate it. 😊.. But just an update, I already got my ANA Result and it's Negative, but my ESR is still high at 37 mm/hr. AND right now, I am thinking if I still need to do the Anti SSA and Anti SSB test as well as the NCV test since my ANA went negative. But I still have the symptoms especially now I experience sudden heart raise and difficulty breathing. Please advise and hope to hear from you soon again. Thank you so much.
@@rheumatologistoncall thanks for your response and words to uplift my spirit, I do appreciate it. But just to give you an update my ANA test went negative but my ESR remains high at 37 mm/hr and now I just want to ask if I still need to do the Anti SSA/SSB and the NCV test. Currently, I am still having symptoms and having sudden heart raise and makes me have difficulty breathing. Hope to hear back from you again soon. Thaks a lot. 😊
such a time wondering what really is going on...also take athritis medicines etc. but never helped...at times i exerts efforts my head down to my spinal cord at the back likely exploding...can not even do the jogging coz it affects my head more efforts it hurts down my spine.so numbs almost 2 years of my feet and hands just like electricfying seems swelling. Really scared me Doc.
I have sjolgrens,and osteoarthritis and rumtoid arthritis, as well as fiber mialga my Dr does even tell me about the whole decade I feel like you turn on a light bulb my brain is Swiss cheese and the pain in my body is unreal
I live in Arizona near Phoenix. Is there a rheumatologist that you would recommend here? I am having a very difficult time finding one that understands all of the symptoms of Sjogren's Disease. They seem to think it's not serious and that it only affects dry eye and mouth. I've had severe symptoms affecting my brain, eyes (temporary blindness), autonomic system, etc. and so much more. I just can't find a Dr who knows about Sjogren's and will know how to help treat it.
Is it possible to have Sjogrens without positive Sjogrens lab results? I had positive RA factor once, years ago, and was then treated for RA for about 8 years, until a provider change and now there is doubt that the diagnosis was correct.
Hello Doctor, I was diagonsed with alopecia, sjogren 2 years back. Apart from majorly losing my hair and mild cavity, i havent majot sjogren syndrome. I wanted to know if i can joim gym and do weight training. Can i?? Please let me know doc🙏🙏
It's always best to consult with your doctor before starting any new exercise routine, especially if you have a medical condition like alopecia and Sjogren's. They can provide personalized advice based on your health status.
What I do is weights and low repetitions. I used to body build, and I've cut my routines down to about a forth of what I used to do. For me, I want to keep muscle mass, strength, and flexibility, and I add in walking but only 15 minutes. Despite my autoimmune disorders (hashimoto's, UCTD, and now I'm convinced I have sjogrens) and my age, I'm healthier and stronger than most people I know. Changing my diet and light exercise has helped. I'll keep at it for as long as the good Lord allows.
Lyme and co-infections misdiagnosed for 20 years, same symptoms. Allopathic doctors of little help. Precious time wasted chasing their psych referrals.
please see my other video about 10 Vital signs of Sjogren's : czcams.com/video/gDsf7HaL5R8/video.html
I have RA and Sjogrens and it has been very interesting watching each disease rear its ugly head while trying to live and work. Every time a new symptom pops up, I jot it in a journal to and share with my Rheumatologist. This not only helps me to remember everything but we can discuss each issue and its importance. I find this works for me because sometimes I think I’m going to remember and then my brain empties during my appointment 😂 Thank you for your vlogs as the explanations help! Many blessings for continued health and healing!
Same here, plus, a couple more. Now Lyme. I feel like I’m dying.
@@Tinyteacher1111 oh no! I’m 😞
This is such a good idea! I'm going to start doing that too. Thanks for sharing.
@@KathyFuller You are so welcome Kathy! I’m so glad this community can share their tips because some days it isn’t easy 💜
Going to start making notes also
Thank you for continuing to teach on Sjogrens syndrome. 🙂
I appreciate your support and glad you find the content helpful!
When I try to explain my symptoms to the Drs who don't seem to understand neither do they want to learn further... They straight away recommend me to physmental dr. I'm glad I found this channel. It's really very interesting. Thank you
I'm sorry you had to go through that. It's tough when doctors don't listen.
Ask your doctor to refer you to a rheumatologist and get rid of him😊
I love how this doctor explains so much!! Alot of doctors don't realize we haven't gone to medical school. 😊
Dr. Girnita, I’m so glad I found you. Your videos tell me so many of the things I need to know. My rheumatologist is an excellent clinician, but he doesn’t talk to me and there’s so much I don’t understand. Through your posts I will get information that will help me through this difficult journey. One by one I will watch every one of your videos related to Sjogren’s and SLE. From the bottom of my heart, thank you.
Thank you for your kind words. I'm glad my videos are helpful to you!
I have neuro sjogren's with damage to my small fibers and dysautonomia. I started getting better taking b12, vitamin D, selenium, zinc, vitamin C and I stopped all gluten, dairy and processed foods. No more carbonated drinks, alcohol and a long etcetera.
I got way better in a month and now I'm 3 months into the treatment and I also stoppes hydroxychloroquine and prednisone...
That's amazing to hear! It's great to see how much of a positive impact lifestyle changes and supplements can have on health conditions.
Do you mind sharing which b12 and vit d you are taking..i cant seem to find a vit d i can tolerate? Thx!!
@@sunnyelizabeth2910 hii, I live in Chile, here my doctor gave me a prescription to be made in the pharmacy for my vitamin d. He told me to have it after eating with a spoon of olive oil, maybe that could help you too. As for the b12, I was having issues absorbing nutrients so he recommended the kirkland brand. That is fairly uncommon here, but I got it on the internet.
@@sunnyelizabeth2910 are you taking vit d with k2 or k4? When you say you can't tolerate it, what do you mean? What happens?
I was diagnosed in 2004 and all they told me was dry mouth, eyes. That's it!!!! Haven't seen a Doctor about it again
Same with me! But this past year having extremely dry skin hair and starting to get worried
Thank you! I have a constellation of autoimmune symptoms and signs but not much blood work to "prove" or help diagnose specific disorders. The fatigue and pain with which I try to cope is definitely debilitating.
Just hearing you carefully explain the reality of rheumatological disease is helpful to me as I can work towards accepting that I am not imaging symptoms or being lazy.
Your excellence is inspiring! So few physicians choose to go into this specialty; you are making a great impact!
I'm glad my video could provide some clarity for you. Stay strong!
Binge watching videos in the middle of the night.
Thanks for staying up with me! Your support means a lot.
Excellent video. You are so immensely helpful. I appreciate you sharing your knowledge. I have not encountered a rheumatologist with as much knowledge of sjogrens as you. Thank you for all you do! Sending best wishes from Boston! 🤩
I'm glad you found the video helpful! Thank you for your kind words.You are soooooo kind
Thank you for this video. I wish I could see you. I have Sjogren's but I've lost the ability to properly use my left leg and upper arms. I've had 3 EMG's over the years that show nothing. I had a spinal tap that revealed high protein levels but nothing else. I also had a brain MRI that showed white matter. I am back on the merry go round with doctors. They have no idea what is going on with me. I've seen a neurologist that doesn't have a clue but is referring me to another neurologist for a second opinion. I would love to see you and let you examine me. If I need to travel, I will. I'm located in Mississippi.
Get a Lyme test from a Lyme-literate doctor.
I'm truly sorry to hear about your health struggles. Stay strong and keep advocating for yourself.
Ask to be tested for small fiber neuropathy. It's the most common type of neuropathy with sjogrens in studies.
@@roseo322 Thank you. I am being referred to UAB so I will ask them to do this as well. Hope you are doing well 😊
I have learnt so much from your videos on Sjogrens syndrome , thank you
Great to hear!
Thank you again for all of your informative videos Doctor. They help fill in the gaps of the disease, and helps explain some things that you don't think of when you are at the doctor. And yes, multiple autoimmune diseases including Sjogren's.
I'm glad my videos could provide you with helpful information!
THANK YOU SO MUCH‼️ I just did an MRI last week & have to do a EMG this week. I do have Sjogrens & a lot of symptoms that is mentioned in this video.
I'm glad the video was helpful for you! Wishing you all the best with your EMG and your health journey.
Doctor I take good care of myself I don't smoke, drink alcohol, eat beef, pork, just chicken and fish. How do I combat multiple autoimmune disorders disorders that are attacking my body? On top of that I have fatty liver disease. I do have HLA B27 Gene marker for ankylosing spondylitis but it hasn't been active in 20 years. I got it into remission with diet change, herbs, and vitamins. I am not diabetic and I am very thin. Loss of muscle. Honestly I feel like I am dying
I have Sjogren's & Lupus. Along with small fiber neuropathy.
Yipes! I have at least 4 autoimmune diseases and Lyme, but had breast implant illness and mold toxicity. Sick for 21 years and counting!
Me too! It’s a lot of work.
I'm sorry to hear that. Stay strong!
Me too. The small fiber neuropathy was causing horrible full body itching and skin burning to the point of near madness. I recently started low dose prednisone (1 mg per day) and finally I have relief.
I have RA and Sjogrens (rheumi not sure of dx, although have all symptoms but ssa snd ssb are only occasionally positive. In addition, I have Felty's Syndrome and fibromyalgia. My opthalmologist has diagnosed me with an an eye autoimmune condition. My eye dryness is severe and the oil glands along my upper and lower lid lashes are drying up and dying. He said theres a surgery that can be done where he can use a small tool to clean each duct out so the flow is returned. It costs over $1000 each eye and I'm on a disability income, still caring for my daughter on the autism spectrum also diagnosed with ADHD, cPTSD and severe OCD. I'm also diagnosed with type 2 diabetes.
My opthalmologist has requested me to get a Bruder mask (heat it up in microwave, hold it on the closed eyelids for 15 minutes, then go massage the upper and lower lids in a way so the crud in the gland can get thinner (from the heat) and be pushed out. I'm supposed to do that twice daily. I just can't do that twice daily due to severe pain and mobility, as well as not having a microwave. My daughter takes lots of attention and I completely forgot to add this to my daily things to do. I have cataracts as well that need to be taken out, but unable to as yet due to the cost.
Thank you for these videos. They are very helpful. I plan to ask my rheumatologist about some of these symptoms and tests.
I'm sorry to hear about all the challenges you're facing. It sounds like you're dealing with a lot, but I'm glad my videos have been helpful to you.
Thanks, this is a lot of information that i needed.
I'm glad you found the information helpful!
Thank you for your Sjogren's series. It brings to light the serious systemic nature of Sjogren's. I suspect that I have some sort of autonomic dysfunction as I have GI issues, bladder issues, pain issues, tachycardia, temperature/sweating issues, and shortness of breath (not related to either my asthma or PAH). What kind of specialist deals with autonomic dysfunction? I plan to discuss these issues with my rheumatologist when I see her next week.
yes, I talk about that in the video!!!
I, too suffer from all symptoms you mentioned. It’s a and systemic debilitating disease.
I have Sjogren’s it’s the worth. I have been dealing with it now for 9 years. I am happy I found you all.
Thanks
Thank you so much for this information, help me a lot to understand my symptoms.
Thank you for watching! Please share with others and subsctibe for more info coming out soon!
Thank you for these helpful videos! I have neuro Sjogrens, was diagnosed by lip biopsy at the Mayo Clinic. They are still suspecting bulbar ALS as well, but I am going to try Rituximab in addition to my prednisone, to see if that helps with cranial nerve inflammation. Acupuncture has helped somewhat, as has the prednisone. Most neurologists do not talk about the effects SS can have on the brain and spine, so thank you for this advocacy!
I'm so glad my videos have been helpful for you! Wishing you all the best on your health journey.
My symptoms are being treated with cancer med. recently I’ve had an episode of not being able to walk.
I wish you were my doctor 🙂
My doctors seem to dismiss all symptoms that you mentioned and concentrate on one symptom !
Honestly, I am in utter desoeration.
Can't even see my GP due to the state of our NHS.
Thank you for following
Continued.. I have sjodrens, I.C., hoshimotos disease, Fatty liver disease, (A.S. in remission. ) Chronic pain, fibromyalgia, migraines, tinnitus, kidney stone, gallstones, a cyst in one kidney. I've spent thousands on herbal remedies, multivitamins, just name it. I don't need meat Just Fish and Chicken once in awhile but I make protein drinks with fresh vegetables this has been going on for years I've never been overweight. I don't drink or smoke. I am a Christian and my faith keeps me strong unless the Lord is allowing this like Job in the Bible LOL
My doc isn’t interested in connecting the dots beyond RA. I have complained about so many of these symptoms and he brushes me off. Can you discuss ways we can bring up concerns to our Rhumatologist to respectfully insist they take us seriously?
I'm sorry to hear about your experience. It's important to advocate for your health and make sure your concerns are taken seriously.
Im being gaslit and my health continues to go downhill.😡
I have an autoimmune disease since 2015, probably Sjögren because I have the Ro52 antibodies. I have a lot of neurological symptoms that align very well with what you listed in the video. I have a good rheumatologist, but she says that the neurological symptoms need to be diagnosed/treated by a neurologist. But no neurologist I have been to wants to treat me: one thought I am making it up. In a clinic where my rheumatologist sent me to they told me it's all psychosomatic. Because for the last couple of weeks I cannot walk properly anymore and have problems with eye movement, I got a referal from an eye doctor to a department at the university clinic that deals with eye movement disorder and dizziness (they are connected to the neurological department). I hope that works ...
I'm sorry to hear about your struggles with getting the right treatment. It can be frustrating when doctors don't take your symptoms seriously.
Hello... I'm 65 and almost three years ago something happened to my health. I have always been weak and having problems but for whatever reason I went down hill bad. I'm getting my energy back slowly but it co es and goes. But I found these help me. Magnesium glycinate B12 drops B1 (thiamin HCI) and powered Goats Milk just starting a G I Essentials for gut health... these I got at Doctors Nutrition they talked to me over the phone and helped me with my questions about health for free.
I also started having eye problems but after a few weeks on the B1 I don't have eye problems
Hope I find someone like you to figure out my symptoms
Thank you for following
Geez, gosh, golly how I pray I could get help with my SS and some understanding 🙏
Ty for the info❤
Genială această d.na doctor🥰
Va multumesc foarte mult sunteți drăguță
Wow I was diagnosed with lupus and sjogren’s and small fiber neuropathy. I’ve been losing my vision with migraines since I was 16, and I’m 64 now. Lots of other symptoms that you mention including numbness in arms and legs due to cervical and lumbar stenosis. Meds are helping (Hydroxychloroquine, Gabapentin, low dose prednisone, and Benadryl).
Thank you!
@@rheumatologistoncall Thank you for talking about this so comprehensively 🙏
@@stlounsbury thank you
My mom is suffering from sjogren syndrome and is having allergy for the past 2 months. How can we treat it?
Many thanks Doctor
Sjogren +RA+fibromyalgia I'll be crazy
Me too plus more diseases that occurred. I feel your pain.
Thank you for your kind words!
Thanks .really helpful information 👍👌
Glad it was helpful!
Really appreciate your videos on this! I have lupus SLE. Sjogrens is my new diagnosis and I am doing a drop regimen everyday, several times a day. I am miserable lol
Thank you!
I am so sorry you feel so bad!
I am seronegative and am gaslite. Suffering for 5 years and health is going downhill.
thanks Doc....really felt the symptoms of it....makes me so scared...so hopeful to have only tablet medications for it.
I'm glad the video was helpful to you!
Thank you!
We appreciate your support!
Thank You Dr. G. I thought AS, RA are bad enough. This is much much more complicated than I thought about Sjogren's but it is very useful. Thank You.
I'm glad you found the information on Sjogren's useful!
Am diabetic and got ldl cholesterol of 5.00 mnol /L...uti infection too...felt something wronged on my tummy too
It's important to take care of your health, make sure to consult with your healthcare provider about these issues.
Haha. I was told by my neurologist about 2 years ago when they thought I had MS, because I have the brain lesions and on my spine. Ok at that time my then neurologist said you have SS. Ok my frist question was what is SS. No answer and he went on to say I should not worry about this. Well at the beginning of the MS diagnosis I could get around and still work. Now I'm almost bed bound but I can't pay a doctor to help me. I'm silently suffering yet no one is helping. Ok that's my rant of the day. I have SS and I am suffering. I have had these things way before I had thing else wrong with me. What I do know is that I have elevated white counts. I have a positive ANA, and I tested positive for SSA and SSB antibodies. Yet when I go to the doctor because I am a diabetic they shoo me off. Oh your dehydrated when talking about my dry skin, dry eyes that feel like I have sand in my eyes, and by God the dry mouth, I have to always have water with me just so I can swallow. I put lemons in my water to make my mouth water so it won't be so dry. My teeth started falling out about 5 years ago no tooth aches teeth just get loose and fall out. I went from a vibrant woman to being homebound. Life is just not worth living anymore.
I am so sorry this is happening to tou. But please don’t give up. 🙏🏼❤️
Oh, my goodness ~~~ so sad, I am so sorry, just one breath at a time
look for a rheumatologist!
There is always hope. Look for it.
First and foremost Jesus is the salvation of our souls. He gives us hope in the midst of our suffering.
I’m praying for you.
What do you think about Benfothiamine for damaged nerve cells in Sjogren? Or r-Alpha lipoid acid?
yes to fish oil, alpha lipoic
Thank you!
You're welcome!
Had horible dry eyes 20yrs ago and 15 yrs ago but they said not Sjogrens, but 1 Dr dismissed and an eye Dr said problem with part of eye that puts out fat covering for eye. Did find if eat less foods with high oxalic acid was helpful. What does vasculitis or optic neuritis look like? Are some nutrients low in that sjogrens
?
check my videos in my channel and you will find many answers
Sizi anlayabilmek için Türkçe alt yazı lütfen teşekkürler.Sjögren hastasıyım.
I wish my dr s would watch this vid because they do not have A clue this has to be the most misunderstood condition in modern medicine or these dr s do not research the condition
rheumatologistoncall.com/free-resources/
Thank you ❤
You're welcome 😊
After going to drs for a decade for some mysterious, progressive illness, I've given up. I have piles of abnormal labs, abnormal MRIs, pages and pages of symptoms. I was finally referred to a new rheumatologist, drove 2 hours to see him. He basically dismissed all the labs and scans and said its just fibromyalgia and "maybe" sjogrens and I should probably just take antidepressants 😩 the medical gaslighting has destroyed me. They will believe me when I drop dead I guess.
I'm so sorry to hear about your struggles. It must be incredibly frustrating to feel dismissed after so much effort.
I have all these advanced symptoms.
It's important to consult a medical professional if you're experiencing advanced symptoms.
In 2011/2, my VA Neurologist told me all of my symptoms - dry eyes and peripheral neuropathy - are all due to Sjogrens. He told me my negative antibody tests did not prove I dont have it. He left the VA and since all other VA doctors have made sure that I don't get a Sjogrens diagnosis. I dont have dry mouth so they did the salivary and saliva tests to prove to me I neded to stop asking them about it. I dont have Diabetes, never come close to a positive test. I have had xrays, MRIs, CT scans for decades at VA. I have arthritis in my cervical and lumbar spune but not stenosis. VA cannot prove what causes my peripheral neuropathy or dry eyes. Although I do get the medicines I wouldosy likely get.
It sounds like you've been through a lot with your health journey. Stay strong!
I'm just wondering if this disease isn't found and treated in time if it can lead to CML. I've been complaining to Dr's for years about all the different issues I've been having over the years and wondering why my blood work has always seem to come back really off! A few years ago they diagnosed me with CML which is a form of leukemia! Now I'm on a chemo pill for the rest of my life with side effects so bad I can't even function normally from day to day or hardly deal with the pain, depression, severe fatigue and anxiety. I don't mean to complain or sound ungrateful because I know it could always be worse than it is, truly I do. I'm just so tired of being tired and feeling like I'm a burden to my spouse now. I have no kind of life now and I just can't help feeling like it's because they didn't catch the problem before it became a much bigger problem!😢
I'm sorry to hear about your struggles. It's important to keep advocating for yourself and seeking the best medical care possible.
I was diagnosed with with SD and experienced incontinence lower back pain. What kind of test do I need🇵🇭
It's important to consult with a healthcare professional to determine the appropriate tests needed for your condition.
Merhaba doktor hanım sjögren semdromu tüm vücutta titremeye sebep olur mu bütün vücudumda dinlenme titremesi var dil çene dahil birden 2 taraflı başladı sjögren parkinsona sebep olur mu? 24 yaşındayım
Not Parkinson!
I've had sjogrens for many years, and now I have small fiber neuropathy. It's maddening.
Thank you for watching my channel!
Dr 🎉What can blood test for Sjogren diagnose ? Have thyroid problems too
a video is comming
Do you also help with filling out patients disability forms if you find it suitable for patients? Fyi.. I see so many doctors but i feel like you listen...
Thank you for sharing your experience!
How in the world do you get your doctor to look at this disease??
It's important to advocate for your health and communicate openly with your doctor about your concerns.
Goodday dr. I have been diagnosed with RA , because I can't afford medical insurance I am juicing state hospital. Please can you tell me what to use for joint pains? Get traumadol, and paracetamol, and folic acid tablets. Does not help, please has alteritus in jip as we'll due to RA.😢
Unfortunately I am not sure how I can help you and I cant give medical advise on the YT !
I use magnesium, vitamin D3, B12, cucurmin, alpha lipoic acid. It helps with my muscle/joint pain. You need to take for a few months for the effects to kick in
I tested negative for Sjögren’s during a blood test. How accurate is this test?
a new video will be posted this upcoming week!
watch that video will explain everything
Hi Doctor, my current diagnosis is Sjogren, thyroiditis and Hepatitis B. I am asked to do some blood test and NCV. Is Sjogren life threatening? Thanks in advance for your reply.
It's great that you're getting the necessary tests done. Stay positive and follow your doctor's advice!
@@rheumatologistoncall thanks for your response and words to uplift my spirits, I really appreciate it. 😊.. But just an update, I already got my ANA Result and it's Negative, but my ESR is still high at 37 mm/hr. AND right now, I am thinking if I still need to do the Anti SSA and Anti SSB test as well as the NCV test since my ANA went negative. But I still have the symptoms especially now I experience sudden heart raise and difficulty breathing. Please advise and hope to hear from you soon again. Thank you so much.
@@rheumatologistoncall thanks for your response and words to uplift my spirit, I do appreciate it. But just to give you an update my ANA test went negative but my ESR remains high at 37 mm/hr and now I just want to ask if I still need to do the Anti SSA/SSB and the NCV test. Currently, I am still having symptoms and having sudden heart raise and makes me have difficulty breathing. Hope to hear back from you again soon. Thaks a lot. 😊
such a time wondering what really is going on...also take athritis medicines etc. but never helped...at times i exerts efforts my head down to my spinal cord at the back likely exploding...can not even do the jogging coz it affects my head more efforts it hurts down my spine.so numbs almost 2 years of my feet and hands just like electricfying seems swelling. Really scared me Doc.
Thank you for sharing your concerns with us. It's important to address health issues early on.
I have sjolgrens,and osteoarthritis and rumtoid arthritis, as well as fiber mialga my Dr does even tell me about the whole decade I feel like you turn on a light bulb my brain is Swiss cheese and the pain in my body is unreal
I'm glad my video could shed some light on your situation. Hang in there, you're not alone in this!
I live in Arizona near Phoenix. Is there a rheumatologist that you would recommend here? I am having a very difficult time finding one that understands all of the symptoms of Sjogren's Disease. They seem to think it's not serious and that it only affects dry eye and mouth. I've had severe symptoms affecting my brain, eyes (temporary blindness), autonomic system, etc. and so much more. I just can't find a Dr who knows about Sjogren's and will know how to help treat it.
I am seeing patients via telemedicine in Arizona. Chack my website rheumatologistoncall.com/
Is there any correlation between Chronic Regional Pain Syndrome and Sjogrens disease??
it could be!
Is it possible to have Sjogrens without positive Sjogrens lab results? I had positive RA factor once, years ago, and was then treated for RA for about 8 years, until a provider change and now there is doubt that the diagnosis was correct.
YES it is!
I'm wondering - if you were to test the bone marrow, do you think any sign of neuro Sjogren's might be evident?
NO...
Hello Doctor,
I was diagonsed with alopecia, sjogren 2 years back. Apart from majorly losing my hair and mild cavity, i havent majot sjogren syndrome. I wanted to know if i can joim gym and do weight training. Can i??
Please let me know doc🙏🙏
It's always best to consult with your doctor before starting any new exercise routine, especially if you have a medical condition like alopecia and Sjogren's. They can provide personalized advice based on your health status.
What I do is weights and low repetitions. I used to body build, and I've cut my routines down to about a forth of what I used to do. For me, I want to keep muscle mass, strength, and flexibility, and I add in walking but only 15 minutes. Despite my autoimmune disorders (hashimoto's, UCTD, and now I'm convinced I have sjogrens) and my age, I'm healthier and stronger than most people I know. Changing my diet and light exercise has helped. I'll keep at it for as long as the good Lord allows.
Hello. Have you treated patients with plasmapheresis or is it too experimental? thanks
yes, I have
what is the treatment?
listen until the end I talk about treatment in the video
Will the brain be affected in every sjögren Syndrom Patient?
No!!!!
Ma'am I have AS and I am 42 years old. Does Siegen syndrome also affect AS patients?
not necessarely
@@rheumatologistoncall You are very nice and kind, keep doing your work like this, God bless you 🙏 m from India
Lyme and co-infections misdiagnosed for 20 years, same symptoms. Allopathic doctors of little help. Precious time wasted chasing their psych referrals.
If you have sjogren's and diagnose with breast cancer. Can you receive radiation?
most likely yes, but talk to the oncologist
❤
Autoimmune diseases seem to bring along all their friends. 🤦🏼♀️ ❤
It can feel like a never-ending battle, but you're not alone in this journey.
FBI.
Holland.
Intimidation
technique,
cyber gang stalking.
Thank you for sharing your thoughts.