Sjogren's Syndrome Affects the Brain and Spine

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.

My niece was recently diagnosed she has an extremely rare presentation she's been having constant strokes before and after diagnosis there's only one other person in the world that presented like this with multiple strokes usually if you have a stroke from it you only have one and to add my sister died three years ago her mom from multiple strokes that they thought they had under control but they didn't and she passed in her sleep so that's scary right now they're trying to figure out how to stop The strokes we've been trying to look up all the information we can but it's so rare they're just kind of throwing everything at it right now

I have sjogrens. I also have a brain aneurysm. I also have had a cervical fusion c4 c5 c6.
I get my aneurysm checked yearly and the last image showed white matter which never showed up before.

I've got it ill share all labs I had done for the diagnosis too helps others

Is there a connection between Sjogrens and CSF leaks?

My ? Is possibly having this as well as being diagnosed with ankylosing spondylitis. Should we be proactive in our 2 teenage daughters with the vitamins to help prevent this into our children?

Pretty sure I have this. I have another autoimmune disease. Psoriatic arthritis.

You didn’t mention Wilson’s disease as a possible cause of Sjrogens

Thank You

I've learned so much from Dr. Girnita's videos, It really helps me try to be an advocate for my own healthcare with the autoimmune diseases I have. She is showing how what I had 23 years ago all correlates with Sjogren's, it helps to stimulate my thought process to help progress my care when it's not progressing. PACNS survivor here.

I am suffering from dry mouth , tooth problem, dry eyes for last 3 years but. Got no solution, i thought its manopause symptoms, thanks for sharing,
Now my one eye is diagnosed with wet macular degeneration, my tounge cuts also with dryness

Buna ziua, doamna doctor! Va urmaresc cu mult interes din Bucuresti si imi recunosc simptomele Sjogren. V-as fi recunoscatoare daca m-ati indruma cartre un doctor reumatolog cu competente pe Sjogren, din Romania, in cazul in care tineti legatura cu cineva din tara. Multumesc mult!

I had a severe case of mono when I was 18 and was hospitalized. They say autoimmune disease before it was MS. Now they don’t know

If u are put on hydroxychloroquine-
And started taking it next blood work said neg results before med it was positive is that what the hydroxychloroquine- should do keep the primary Sjogrens I. Check I said if I was positive then after meds I was negative in blood work isn't that a sign I don't need to continue that medium 71 been taking this med for a year and a half now

I recently survived Spinal Meningitis. I was diagnosed with Sjogrens almost 10 years ago. I was only 54 years old. I really give credit to all the supplements and vitamins that I take. I changed my diet to an Anti-inflammatory Diet. No gluten, dairy, refined sugar (watch out for high fructose corn syrup and soda), soy,fried food and processed food. I went out to eat with my gf, she says, "Girl, what can you eat? There are plenty things to eat, you just have to change your focus. Today I had a check up with the rheumatologist. I'm off the immunosuppressant drug Arava that I was taking. My CRP levels, inflammation is down to 1. The Arava lowered my immunity so much that I was not able to fight off a head cold. Head cold turned into SM. I also just finished 6 weeks of Physical Therapy after being released from the hospital and rehab. Eat healthy and take the supplements. Yes, It cost extra but aren't you worth it? This is my answer for my gf who says,"It's too expensive."

I need an appointment with you please

Did all of you have polio vaccination as children? Or small pox scratch test vaccine?

I’ve been diagnosed with Sjogren Syndrome along with many other’conditions. I recently got a Herniated Disc Bulge and my doctor prescribed Dihydrocodiene pain killers. I took them constantly for four months, two four times daily. I became so ill I was sent to hospital. I’m Hallucinating, Delirious, I thought that a group of people were trying to break into the Ward and they were throwing bricks and cement blocks, screaming and shouting. It was terrifying. I’d become extremely constipated and I was given so many laxatives mixed with other laxatives my digestive system isn’t back to normal. No one seems to understand anything about Sjogren’s in the UK and I feel so bad there’s nowhere to go to for help. I will never take Dihydrocodiene ever again that’s for sure.

I consistently experience a Sjogen's flare - temperature, dryness, joint muscle and spine pain - 10 - 14 days after a gastritis 'attack' (maybe with liver involvement, difficult to tell). Just mentioning in case it resonates with others.
Thank you doctor for your helpful videos. x

Well, lots of info but nothing on what we should do, or take for it????

Do you offer online help ?

thank you

Seizures came before my Sjogrens was diagnosed. What do I get for treatment? NOTHING

This is excellent. Thank you.

Was Trigeminal Neuralgia on there? Or is that something else altogether?

I've been dignosd for a long time. I have been dignosed now with NMO.

What excellent educational information.Thank you so Much for this i can relate to this as I suffer from this ,it has a detrimental impact on my holistic self throughout my body. My Rheumatologist diagnosed this.
I sympathise with you all..
Hope you all find a method to manage this debilitating condition.
I mostly struggle daily on a basis I have to take each day as it comes and assess the situation on who my day will be.
It's a painful condition.
Once again thank you for clear understanding.

I just got told I have this and lupus I only tuned 32 today and I’m fuking terrified plz any advice thanks Laura

I’m still amazed with this awesome transformation in my life after using Dr Oria supplement for the genital herpes" I'm finally free from it

Thank you ☺️👍🏾

Dr how to come out from sojourn syndrome in orally ways or natural ways

HepB causes sjogrens and thyroid problems.

Do a detox

The World Council for Health

Imuran isn't cutting it. I had CVST in 2016. I was diagnosed with Sjogren's a year ago. I feel horrible. I have headaches, dizzy, and pain. The Neurologist I saw had never heard of Sjogren's and did nothing.

I was diagnosed with Jsogrens and never heard of it , but all the symptoms match my body , I work part time , but the doctor is going to make me work accommodations , the headaches , the back and neck pain are to die for , the meds makes me sleepy and my eyes and mouth are always dry. I’m glad I can get educated on this , I’m glad my doctor was able to send me to an RA and that’s how I was test for ANA and came back positive . I’m just scared of the dementia part.

I have problems with understanding accents and have some hearing loss. You speak very clearly and I appreciate that. The closed captioning for your video was very accurate. Some come through on other videos as just nonsense. However, you should check the cc because it often didn't spell Sjogren's correctly, often substituting "children". For your viewers that have hearing loss, it's aways appreciated to have accurate closed captioning.

Just had an elbow surgery canceled by the anesthesiologist because I wanted keep chewing gum for dry mouth until ready to go to surgery. I tried to explain sjogrens to him but he just looked at me blankly. He then proceeded to talk to me like I was 5 yrs old (69 yrs and PhD) I went home and in 30 minutes found 5 medical papers saying "surgery should never be cancelled or delayed due to gum chewing". I had an appt with anesthesia depart and brought copies of papers.
I stated that he wasnt up on medical info including statements from American Society of Anesthesiology. The 2nd guy assured me that he would circulate the info so their 70 anesthesiologists would be up on latest. He also said that it would go in my file and it would not happen again. We are trying to reschedule which is taking time. Meanwhile the bones in my elbow are degrading every minute due to traumatic arthritis (only 50% left). If it gets so bad that they cant do the surgery successfully, I will be sueing malpractice and negligence.

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. 😢

Recently told I MAY have seronegative Sjögrens. Currently have cranial nerve 3 and 4 paralysis in left eye. Is it possible that SS could be the culprit? I’ve been told yes and no. RF of 49. Other tests so far are negative. Dry mouth, leg and joint pain that bounces from hips down to ankles, right arm, fatigue and labored breathing.

So many of the symptoms listed that a patient may experience if they have brain/central nervous system involvement, I thought, were just part of living with Sjogrens- as in, everyone who has it is subject to these but now im wondering if this information is to say that those who have sjogrens with brain/CNS involvement experience but not those who do not have brain/CNS involvement?
Is the treatment that different?

For years all the crazy things that just keep coming up, seem to be chalked up to “well, you have autoimmune “ -
Wondering if the narcolepsy is connected - or complications an extreme shingles outbreak left behind - or never ending verigo, possibly meneirs and so much more.

I was diagnosed with Sjogren's after having a stroke and multiple TIAs where no obvious cause was found. While trying to find the cause, my neurologist saw evidence in lab tests, scans, and symptom history that pointed towards cerebral/CNS vasculitis. He referred me to a rheumatologist for evaluation, expecting that I would most likely be diagnosed with Lupus. But I was diagnosed with Sjogren's and Rheumatoid Arthritis instead.

Bonsoir, je voudrais lire les commentaires en francais ! Comment faire ? Merci !

Is it possible to have Sjogrens Syndrome, and sero negative RA? I have high Sed rates, High CRP readings, of and on positive ANA, so very confused....

I am trying to find a more in depth look at the various skin manifestations (specifically in my case vasculitis). Any suggestion is welcome. Thank you for your time in educating us about this syndrome!

I am 35 years old and have had Sjogren's syndrome for the past 12 years. I lost my medical assistance four years ago, and sometimes I wonder how my future will be. Since my last appointment, I have experienced new symptoms such as fatigue, muscular, and joint pain. I have no idea what to do. In Brazil, this disease is completely neglected, but we keep going. Currently, I am in the US for work and will stay here for another month. I have been taking advantage of the many products available here that cannot be found in Brazil. I feel that Sjogren's syndrome is taken more seriously here. I wish I could apply for the studies they are conducting, but since I won't be staying, I cannot participate.

Dr Diana, could you pls add to your videos, information on how is it possible to know from a brain mri, if a brain tumor (Leaf Meningioma) is not really a tumor but related to PSs and if there is a specific mri scan to know this. Thank you.

Thank you so much for your videos and sjogrens information. I have been diagnosed for the past 5years but from the symptoms I know I’ve had it longer. No dr has been able to explain my sickness to me and I have just been silently painfully suffering due to lack of knowledge. This video and your others have helped me realize I’m not crazy like they say. My body has been declining I can feel it but they just say they don’t know so obviously I’m making it up ugh. Something is really going on and has gotten worst since I had COVID in 2021. I hope everyone feels heard by this video as well, and sending loving healing vibes

Is severe vaginal dryness associated?

Hello I have neurological sjogrens can you bemy doctor? I'm in the USA

Thank you for such a profound and insightful reading! I’m getting through all this with Gods blessings and wisdom . ❤️🙏