Sjögren’s Syndrome in Relation to Central Nervous System Disorders

[@sherrylynette2191]

Sjogrens has gone from Syndrome to DISEASE in medical literature. We need to have a support group and conversations with THE specialist. Patients need care. Not Prozac.

[@Germatti13489]

yes and it seems like you have to do your own research because doctors will not keep up with everything. I had to tell my doctor about low dose Naltrexone but at least he did write the prescription for me.

[@efiedtkou3943]

I agree your thoughts

[@marie-rosedaly4234]

​@@Germatti13489 I agree Had to tell the general practitioner about my devastating difficulties with SS, he admitted frankly that he has no knowledge about it period. At least he was honest. :o)

[@srs3572]

Agreed 100%

[@Hugatree1]

With sjogrens I have almost daily migraine, radial joint pain and constant fatigue. One day I feel and look great, next day 👎👎👎. Anyone else experience this?

[@citlalie9791]

Yes Joint pain Nerve pain migraine every day nose dry mouth dry constipation Neuropathy fatigue Gastroparesis IBS Gerd Hernia Poly Arthritis. Most painful is nerve pain. Dry eyes dry mouth Pain inside collar bone.

[@Germatti13489]

@@jeccabalinor have you or anyone else tried low dose Naltrexone?I have been on it two months and it is really helping my symptoms from my Sjogren's and my other autoimmune diseases. I still am battling some fatigue but it is wonderful to be able to do more than one thing a day then not be laid up for two or three days afterwards!

[@Germatti13489]

@@citlalie9791 have you tried low dose Naltrexone? It is helping my Sjogren's in my other autoimmune diseases.

[@Germatti13489]

Oh yes minus the headaches. But I have found certain foods trigger the achiness for example high fructose corn syrup and processed foods. So I have to stay away from things like that for the most part.

[@Smartones-y2r]

Soaked fenugreek seeds,,, and avoid food that triggers my symptoms is helping me I take apple cider vinegar everyday

[@sunshine2528]

God bless all of you with these terrible symptoms, whether you have a firm diagnosis or not. Reading through these comments is heartbreaking. I wonder how many are still with us, are any of you getting better? I’m so tired of this invisible disease and my family thinking there’s nothing wrong with me. 🙏

[@wendyhannan2454]

That’s the trouble we look well. 🤷‍♀️

[@redefiningmyself8598]

Dr. Julius Birnbaum specializes in both neurology and rheumatology and is a well of information for those of us who fall thru the autoimmune disease cracks of sub specialties. Wishing everyone well on their journey of accurate diagnosis and treatments

[@montanak7]

I’ve had a diagnosis of fibromyalgia, rheumatoid arthritis... Polyarthritis For years. I was hit by a car when I was 11. Had mononucleosis when I was 13. And I’ve recently been diagnosed with Sjogren’s, Addison’s, and thin persons Hashimoto’s. My blood work just came back compromised kidneys and liver. My brain fog is so bad I can’t even take care of myself much less all these diagnoses.

[@nancyraymac]

Plaquenil helped a lot with brain fog

[@ritadaniels3175]

The FOG U spoke about sounds like U NEED A 🌟🌟🌟WORLD CLASS🌟🌟🌟Endocrinologist that can have patience & USE BOTH the Lecture & Textbook knowledge they received in Med School PLUS OBSERVATION & LISTENING TO U to treat U‼️🥲😲

[@StillFab44]

😢I’m so sorry that all of this is happening to you and I pray that you have a strong support system. It’s hard for people without these ailments to understand what we go through on a daily basis especially when you don’t l👀k sick. You alone are your best advocate. Keep pushing and I pray for your healing and well being. Sjögren’s Strong 🙏🏾

[@judipierry549]

I have great sympathy for you Montana as I too have multiple co-morbidities and also experienced several serious injuries/illnesses/traumas throughout my early years. I never really thought about them as I always recovered well, or so we thought. I just simply got out of bed when I “felt” better and carried on. 🤷🏻‍♀️ Now in my 60s life has been hard due to medical issues for over 30 years because of chronic health problems, some I’ve had since childhood, others diagnosed along the way and almost all of them frequently “come grouped together” in syndromes. Sjogren’s is a biggie if it’s systemic and of course it is! Plaquenil has been a game changer re: the Sjogren’s for me. Every little bit helps.

[@wendyhannan2454]

@@StillFab44I second that, good luck I hope you find wellness.

[@michellelloyd6256]

It is effecting my lungs, heart, fatigue, migraines, pain in joints and muscles

[@Hannahsangel]

I’m so sorry

[@Smartones-y2r]

Try apple cider vinegar prepare it in your home...

[@ravicloudnine]

@@Smartones-y2r can you tell more about how it works and quantity of intake.

[@Smartones-y2r]

@@ravicloudnine dear key for every autoimmune disease is to heal your inflammation. I am going to share something which can help you .. Take alovera gel from real alovera plant remove the green portion from knife... Take indian gooseberry powder (awla powder ) 2 teaspoons boil them together for 15 -20 minutes when color of water will change and its level will decrease then allow it to cool and then drink .... Try it once.

[@ravicloudnine]

@@Smartones-y2r hi, thank you for sharing this. I will try it out. Please also let me know how long should I do it.

[@marciekazarovich617]

Thank you for your dedication and work in this field!

[@omygod9062]

I’d concur with the nerve pain. And my first symptoms was aching in the spine and it feeling very cold.

[@kristineanderson4983]

I am so cold and sometimes one ankle feels very cold, but not to the touch.

[@paulwoltman873]

I'm a Male who has primary sjogrens and this really is a daily challenge...under attack from head toe - invisible disease.

[@punkbunnee9558]

I'm learning how many difference is there are for males and females. I never realized this before, but it makes sense, since my symptoms are brought on a hormone fluctuations. Have you are able to learn what you need to live your best life

[@srs3572]

Paul, thank you for sharing your experience. Men suffer greatly from this as well.

[@lashawnablanton4649]

Thank you for all the time research and awareness Dr

[@suwmas]

I just read that NMOSD has an antibody they can test for. I'd love to know what that antibody is called. Can Dr. Birnbaum tell us?

[@annettewaterton4962]

My symptoms are my memory is poor, my nerves are through the roof, I had really bad pain in my knees now my heels and my hands , stinging eyes and a very dry mouth and most times with ulcers I feel sick extremely fatigued and headaches. I have itchy eyebrows which I wake up pulling hairs out and they are extremely brittle and the hair on my head are the same, so I figured I should look at buying a wig soon 😂😂

[@michellelloyd6256]

I feel myself getting weaker everyday. Why is it so hard for doctors to recognize my blood work doesn't lie. I have tried to get an appointment with him nut they said I couldn't because i already have a rhuematologist but she does nothing for me and I am getting sicker and sicker. What is the point of posting here if no one is going to respond to it?

[@pedroyrigoyen7735]

Go And search for dr Jhonson videos he treats the problem

[@vickyboy45]

Hi my name is ana and I have this syndrome for almost 30 years, but only a month that found out. I have two kind of LUPUS for about 22 years but I'm sure that I have these for longers years. The thing is that you go to the Dr. and they look at you like if you're crazy or that you want to go and get a check for disability . I worked being sick for years and sometimes I couldn't put my feet on the floor and called sick and get what! he used to tell me that take my medecins and go to your work. Try to see a Lupus Dr. and maybe you will feel better. Good luck.

[@Germatti13489]

Michelle Cookie try low dose Naltrexone,go on healthgrades and see if you can find a different rheumatologist that your doctor can refer you to, make sure that you quit eating high fructose corn syrup, soy, dairy, processed foods, and genetically modified foods. Cook for yourself so you know what's going into your food and don't eat out for awhile.

[@Smartones-y2r]

Soaked fenugreek seeds and apple cider vinegar

[@phljent]

Ana Cabrera or they tell you that you are depressed and give you an antidepressant and send you on your way.

[@lmmillette1]

Thank you so much! This is very informative. As a Sjogrens patient, there is very little, if any, understanding from most of the Denver neurologists and rheumatologist I have seen about what Sjogrens has done and is doing to my body. I am not even currently on any Sjogrens meds, from my rheumatologist. This is frightening to me because of the amount of issues I have. Please let me know if you have any suggestions for the Denver area as to specialists in Sjögren's syndrome and related autoimmune diseases. We have no John Hopkins related facilities here.

[@Princesscarlie]

Lisa M What are your symptoms? I'm going to be tested And have neurological Things going on

[@MyStolenEyes]

I have a wonderful psychiatrist and rhumetologist. I am extremely lucky. It took years to find them though. My psychiatrist also has a secondary practice to prescribe Suboxoze for addicts and pain management, I think that might be why he is so knowledgeable about not only the mental health impacts of autoimmune disorders but also the pain that can come from them. Maybe that would be a good place to start, cross check psychiatrists who do family treatment and addiction/pain management. I went to him initially for other mental health issues that I didn't realize were being caused by the "brain fog" and sleep deprivation and he helped get me to the right places. I do pay him out of pocket however, but it's really worth it if you are able to. My Sjogrens does have other systems involvement (arthritis, autonomic nervous system, digestive system) and I am also Celiac. My rhumetologist just started me on Prednisone and Hydroxychloroquine a couple months ago. It can take up to 6 months for the Hydroxychloroquine to be at full effect, after that I would only use the Prednisone in the case of a flare. I hope you find someone. Have you asked directly what their treatment plan is and what is preventing them from starting you on medication?

[@msackettcna78]

The first line of defense is an immune suppressor plaquinil. Cut out anything that may cause inflammatory response or allergy. Orencia is also used to treat sjogrens as off label drug

[@MyStolenEyes]

@@msackettcna78 That is the brand name of hydroxychloroquine. I'm still on that but have had methotrexate added (after trying for months on Azathioprine - I still had to constantly use Prednisone so we decided to try something else). Methotrexate is difficult - it's taken once a week - and, as you would expect from a drug also used for cancer, it makes me feel awful the day after I take it. I also have to take gabapentin because I have a bunch of neurological symptoms so I have an appointment with a neurologist as well. It's crazy how bad it can get, but I am willing to trade 1 day a week if I can get the rest of the week back even at just 60 percent my old self.

[@Germatti13489]

@@MyStolenEyes try Low Dose Naltrexone

[@lauralong6695]

I just started Dr Brooke Goldner’s hyper-nourishing protocol outlined in her book Goodbye Lupus. After only a week I’m already experiencing great improvement. I can finally sleep without the pain and burning in my feet. As a result I’m not as fatigued or mentally taxed during the day. I fully expect to go into remission.

[@kristineanderson4983]

Does anyone have painful bumps on their scalp?

[@pennyc11]

This helps me understand why I have several ailments not just one. Some symptoms are not related to the other one. A lot of patients with Sjogren's do develop FM. I just do not know which one set off the other one? For years, I have stated my illness has a nerological trigger. It isn't emotional or in my case due to CA. My brain misinterpets any form of strain as a threat and responds incorrectly to it. Close to 30, a good nights sleep did not reset my pain level like it use to. Leading to constant threats of tendonitis, bursitis. It is not just all in our head though. At least for my family. Biological changes, perhaps first with the growth spurt toddlers experience, than changes in purberty, than hitting that 30 time clock. These factors were my triggers that caused my illness to advance in me. There has to be a way to counter act these problems, in our case it may just be biological. My three adult children have not reported any signs of the more serious symptoms. All have allergies. None have reported prolong bouts of common flues requiring antibiotics. Only one has vision problems. None have reported arthritis yet. None of them report tendonitis, bursitis and my eldest is reaching 40 now.

[@kristineanderson4983]

I am untreated and getting very sick. I wish I could get help.

[@joannalynn3848]

I have sjogren’s and I have been diagnosed with Dementia. Could this be related to the sjogren’s?

[@wendyhannan2454]

I’m so sorry, that’s really tough on you.🙏

[@pennyc11]

Yes, do a YT search. There are a couple of good doctors posting here that explain this. Because Sjogren's is a brain malfunction that affects so much of our body. Our brain is the conductor of all things. I am sorry to read it has advanced this far. What we eat matters. I learned in Psyche that you may not advance to total lack of recall. Good luck.

[@pennyc11]

Yes, do a YT search. There are a couple of good doctors posting here that explain this. Because Sjogren's is a brain malfunction that affects so much of our body. Our brain is the conductor of all things. I am sorry to read it has advanced this far. What we eat matters. I learned in Psyche that you may not advance to total lack of recall. Good luck.

[@whatsonmymind4848]

I have a question: When I wake up in the morning I have a dry throat and mouth, my hands are swollen and sweaty, I’m not rested at all and my joints hurt as hell and I’m extremely stiff. Also my eyes are dry and hurt. However the dryness goes away over the day when I drink something, only the swollen hands and joint pain stays and fluctuates. I’m tired all day every day! No energy at all! I do have dental problems and had candida infection. My skin is definitely on the dry side and peels and cracks, especially in my face...I do have stinging i. My fingers and toes and often describe it as nerve burn? What do you guys think? I’m so clueless and I hate going to sleep... help

[@maerap944]

go to a rheumatologist

[@mspears_bobobuddytheseniorcat]

@whatsonmymind4848 I know this is a really old comment from the OP, but describes nearly everything I feel other than the sweaty hands. I have a Rheumatologist for around 6 months now and was diagnosed with Sjögren's Syndrome and was already diagnosed with Fibromyalgia years before that (both are autoimmune disorders.) Did you ever get some help?

[@sallyalvarado3785]

My Sojgrened is affecting my tremors

[@frederickamancha1306]

I wish i had a doctor like him. My doc wont give me a diogenes

[@wendyhannan2454]

Then maybe find a new Dr, one that’s listens to you. Drs don’t know every thing. No one knows better than your self, you know how you feel. Journal how you feel. I’ve had to do that. Good luck, take care.

[@ravicloudnine]

Did anyone try AIP diet for Sjogrens syndrom? If yes, does it work?

[@punkbunnee9558]

Yes! Good question . Avoiding my trigger foods absolutely makes my life so much better! The very worst triggering foods seem to be ones that can cause hormone fluctuations. Meat that has been treated with hormones, Dairy which is made using hormones from the animal's body, soy (helps the body produce estrogen) and gluten. I started the AIP diet a few years ago when I read that it is thought that gluten molecules resemble hormone molecules such as those found in the thyroid. ( I had already gone gluten-free, having made correlations for years between my symptoms and gluten consumption) AIP (Auto-immune Protocol) drastically improved my life, until I had to endure a gluten trial to rule out Celiac in an attempt to get my Sjogren's diagnosis (even though Sjogren's runs in my family and I have the same symptoms as several other family members). Have had some trouble with edema, Raynauds and nerve pain in my extremeties off and on since ending the gluten trial and eliminating gluten from my diet again but most of the symptoms that hit me the hardest, such as extreme fatigue, joint and muscle pain, brain fog, difficulty breathing Etc only come back if I'm having a flare up (after being exposed to a trigger food or vaccination or something else that stimulates my immune system). I have heard that other people have great success with AIP diet, and I have met those who either have a hard time sticking with it or don't want to cut everything from it. Or haven't had as much success. It seems the success rates vary depending on how long your symptoms went untreated, your gender and how bad your symptoms were before starting the AIP diet. I hope this helps someone!

[@pennyc11]

@@punkbunnee9558 Thank you for posting this. I will look into it. I know my diet can be better but I need recipes that I can follow with a limited diet.

[@miniholmes5148]

@@punkbunnee9558you’re the first person to say edema! I’ve had it for 10 weeks now. Not even the doctors have mentioned this. How do you deal with it?

[@rosek8393]

What are the meds? For nerve pain

[@mysweettlife]

I take Cymbalta

[@meinungabundance7696]

I've had Sjögren for 10 years, but never had any pain or nervous system disorder. Just sicca in my mouth. Bu I was always taking vitamin B.

[@patronsaint8392]

I'm very late but i have the same symptoms. They got triggered when I got the covid vaccine. Don't have any pain or joints issue, but have very dry mouth, brain fog, frenzy

[@mohammadjaved6628]

Nose breathing is it's cute I experienced it

[@tammyhanson7843]

I’m type typo type 2

[@dr.froghopper6711]

Hmmm.. Sjogrens Syndrome and Múltiple Sclerosis.

[@marlak1104]

All this to tell us they’re not related, now what?

[@dianebarron8362]

I would suggest you look for a holistic dentist or just have your old root canals extracted and you will be cured, I did and was cured . Look it up --Relationship between root canals and your health