Sjogren's Syndrome Affects the Brain and Spine

Check out my new video about BEST FOODS FOR SJOGREN's https://youtu.be/EYaOJckVTSM

I got diagnosed 5 years ago and have not had any treatment but been maintained. It has grown bad and brought pulmonary fibrosis,COPD, honeycomb lungs,rheumatoid arthritis. Gerd, and so much more plus now have heart disease. Honestly I have mainly been on my own and now my body is giving up,the mind is strong,my body is going. This disease needs to be educated cause I couldn't tell you how many nurses and even doctors don't know anything about it. I bet I don't finish the year. Stay strong soldiers

I hurt so much. It hurts to stand and walk. Everything just hurts.

Prayers for people with sjogrens on this site. I also have sjogrens, fibromyalgia, degenerative disk disease at the base of my spine & osteoarthritis.

Omg!! I was a nurse for 50 years (25 years as a nurse practitioner) and have found out more about this disease from this video than I ever had before! Thanks!

I’ve was diagnosed 25 years ago but continue to be frustrated that it’s not taken serious as a systemic disease. If I say “I have Sjogren’s” Drs say “oh, you have dry eyes and mouth. “

I totally agree! It’s surprising how many doctors have no knowledge of Sjogren’s . All they usually will know is dry eyes and dry mouth. 😢

My update. Well I am coming up to my anniversary and everything started with sjogrens. I am posting this cause I want you to know that this disease has opened the door to other things that include pulmonary heart disease. My GERD has worsen, my rumatoid arthritis disease has worsen, my lungs today that my doctor said my lungs are gone and need a lung transplant but turned it down. My thyroid has to have a biopsy and my kidneys are starting to get affected. They found h polori bacteria in my stomach. And so much more. So I am telling you to take care of yourself, you don't want this pain and I am letting you know that your door is open to other things. So be safe. You don't want this. Don't ignore it and don't think you will be ok. I have Arkansas social security making my stress hard cause they took away my disability, so I got a lot of fighting. Stay strong, don't be walked on and accept wrong doing and fight . I am not looking for sympathy, I am showing you that how to be a fighter. You got this . Stay strong soldiers.

Thank goodness for a doctor who recognises neurological disorders in Sjogren's!

My best friend died of this and I just couldn't understand how a 48 year old woman could just die from this. I am a nurse educator but never learned anything about this in school. So sad

Average age of onset is 40-60 years...I got it when I was 19 and I have learned more about this disease from this channel than from my doctors in the last 16 years! Thank you so much!

I was hospitalized at 2 Weeks old for bacterial meningitis. I wasn’t expected to survive. I’m certain I’ve had Sjogren’s my entire life stemming from that.

The trouble is that most rheumatologists, and virtually all neurologists, have no knowledge or understanding of the CNS factors in Sjogrens. Even these highly specialised medical professionals dismiss it as sicca symptoms only. Being seronegative, I cannot convince a rheumatologist in my country to even begin to treat me. They won't even do a lip biopsy (not that it always helps). Successive interviews with neurologists have failed to interest them in the very first symptom of Sjogrens I experienced - sleep hyperventilation/tachypnea. A condition only previously documented in a single paper, with no connection to Sjogrens at all, which left me completely exhausted with no recourse to rest. I still can't get a brain scan for love nor money. I have bullied my sleep doctors into providing me with a bipap, and worked out the optimal settings myself since no defaults exist for this particular symptom - but from the Sjogren's forums I know there are many more people out there with exactly the same experience but none of the understanding they need to fight doctors on this. I appreciate you putting this information out there - it is something Sjogren's patients understand very intuitively - however there is a very, very long way to go for our doctors to appreciate it.

Too many Drs pooh pooh sjogrens like it's a nothing burger they should be ashamed of themselves . My retina opthalmologist specialist surgeon and dentist know more about sjogrens tham my primary care doctor and Rheumatologist, It's disgraceful and us patients suffer terribly.

Man I wish we had Drs like her where I live! I'm going downhill fast!

I had a really severe case of mononucleosis when I was 17. Couldn’t move from the migraine, neck stiffness that never went away, light sensitivity extreme, lasted 3 weeks and I never left the dark room for the whole event. Neurological, Orthopedic, Cardiologist, Immunologist, Rheumatologist, Are the constant companions, and illness has been a way of life for me as long as I can remember.

Thank you so much for these videos on Sjogren’s. You are really thorough, most drs don’t understand how systemic Sjogren’s really is. I find I have to explain the disease to many medical professionals.

Thank you so much for these videos. I have been living with Sjogren's for the past 18 years. Last year, I had a bout of COVID, and since then, I have noticed a pronounced decline in my mental and emotional status. I was beginning to think I was crazy, but your video has helped me to understand my disease so much more. Thank you again, and God bless you in the work you do for others.

Pretty sure I have this. I'm 40 and have been having symptoms for like 10 years. Super dry eyes, cervical stenosis, severe headaches several times a month, dizziness, foggy brain, and crazy fatigue. Doctors blow off my symptoms and say my blood work is fine and I'm too young to worry. Intermittent fasting and eating clean seems to help the symptoms but it's hard to commit to a life of IF. 😮‍💨

What bugs me about all of these autoimmune diseases they’ve come up with…it seems they’re only interested in naming the disease, compiling symptoms, and treating symptoms only…pain relief is a major factor in this phenomenon driving patients to believe that is treating the disease…when are scientists going to actually start looking for the cause of this type of disease beyond calling it autoimmune….I would think theyd steer away from naming it all autoimmune because it’s becoming quite clear what causes autoimmune type responses…an enormous amount of poison being introduced into the body all at once…extremely toxic chemicals cause these types of responses…im going to leave this an open ended comment for a reason……lol……..