@Taiwo Omotosho Hello Taiwo, do you have sjogrens? It's nice seeing a nigerian commenting on this.

Read these 3 articles and you will see that there is a bright light at the end of the tunnel. Bovine Colostrum Emerges as Immune System Modulator www.bodyboostcolostrum.com/immune-and-autoimmune/ www.alive.com/health/colostrum/ synertekcolostrum.com/bovine-colostrum-emerges-as-immune-system-modulator/

how did you do thw keto diet? everyday?

thank you for your info .

@@Lestek57I’ve heard the same thing

Did ur liver kidneys get affected?

Yes sometimes .prednisone helps I watch what I eat and take care keep positive thoughts ❣🦋@@maggimcclure6366

Sorry to hear that. Best of luck to you moving forward Susan!

I’ll be pray for you going through the same

What meds were /are you on? Thanks❤

Glad it is helpful!

dootlebug1230 check out the Sjogren’s Syndrome Foundation website.

@@johncarey4186 thank you, I've been diagnosed with Lupus and Sjogrens over a year ago so I thank you for posting this.

Plz also know that it affects the nerves as well. I did not know this am mot everyone does because it is rare but it happen to me. So i am now trying tk inform others. If you start feeling numb go bk to your doc an let them know. I went to er an was sent home even tho i could hardly walk an had no reflexes in my legs the 3rd time i was kept cause of a pancreatitis attack due to sjrogens as well. I never drank a beer or any thing like that. So the doc wad shocked an kept me. Nero found out i had sjrogens dud the test for gbs at 1st an ms to make sure because it happen after i was sick with the flu. Well he goes the only thing is sjrpgens now is the cause its rare but happens. He said he never had anyone that had ot so he had to figure put a way to treat me an lucky enough its treated lime gbs. Plz listen to body an ig doc dont find a different one. It is life or death at the time you cant feel nothing from head to toe it then affects breathing na that happen to me as well.

@@stephanielong2674 Thank you for bringing this up. I had nerve issues too. Before I was diagnosed with Sjogrens several years ago, I had Bell's Palsy on the left side of my face. Months leading up to the actual paralysis I was in alot of nerve pain. It started with pain that would radiate from my head to feet on my left side only. Then as it progressed, I started to feel real heavy brain fog and would start to lose my balance. When taking steps I'd feel like I was falling further into the step, especially when I'd step out of a car. I had had a lot of pain on my head, neck, ear, and face (left side). Started to get light twitching that wouldn't stop in my eye and left side of lip. About 3 days after, I woke up and couldn't blink my left eye and my lip kind of just stayed in position and wouldn't move. (Left side only) I didnt get drooping of the face, only paralysis. At the time, they diagnosed me with an intracranial nerve infection and inner ear infection. It took the actual face paralysis to get a diagnosis after multiple doctor visits. Also a year later I had a kidney infection and was in excruciating pain. I don't drink alcohol, coffee/energy drinks or soda and they couldnt figure out why I got the kidney infection either because I didnt have a UTI or anything that could have cause it. It was just several years of ER visits for multiple issues leading up to finally getting a recommendation to see a Rheumatologist.

Yes..same here. I too have a positive ANA...everything mentioned 😢im losing hope

I also have Lupus, RA, and Fibro among other autoimmune diseases. It does all blend after a while

If only there were no risks with ports. That would be a dream to be able to stay hydrated. Glad you love the app! It is so helpful.

Try drinking electrolyte water or Gatorade if sugar is allowed. It’s more hydrating than plain water.😊

Can you please assist me ?

What are you doing naturally?

Read these 3 articles and you will see that there is a bright light at the end of the tunnel. Bovine Colostrum Emerges as Immune System Modulator www.bodyboostcolostrum.com/immune-and-autoimmune/ www.alive.com/health/colostrum/ synertekcolostrum.com/bovine-colostrum-emerges-as-immune-system-modulator/

Vegan diet is rhe worst you can do wit this disease you just eat fresh organic meat iron and vitamin D should be in your diet

It helped You?

@@monkeybearmax Ty!

I have high sodium and chloride....any idea why?????

since when u have been diagnoised with sjogern syndrome?

Kelsey there are Sjögren’s support groups that have tons of information. Check them out.

The key for me is to find out how to get my body back to functioning normally rather than merely covering up the symptoms with products.

I take 3 flaxseed oil capsules every day and all the moisture has returned to my eyes. I was diagnosed in 2010. My eyes hurt so bad at that time I could not even drive. Felt like gravel on my eye lids.

Nellie Graham i never heard of taking antibiotic for this. Hope it worked for you.

Epsom Salt baths helps the pain

did you try the bone broth?

Oh my gosh.. I just read my life happening almost word per word. I can so relate. Only add on round the clock profuse sweating w very little effort. A symptom no doctors seem to take seriously. It's miserable.

Omg...yes!!! I have pain on tbe ribcage...feels like a marble ( large ) is being pressed into me...😢

Thank you for sharing! Currently I am taking Vitamin B12 and Vitamin D along with a probiotic.

My SED rate has decreased but my markers were already low before starting the protocol. ANA are all still positive. I was told these never change by my first specialist but have seen some report it going to negative for them.

@@HealWithSamantha Hello again and thank you so much for replying. I understand that negative antibody results are possible with the protocol and hopefully this leads to symptom relief. Wishing you well.

What is this protocol please?

Did lupus affect ur kidneys or liver?

​@@maggimcclure6366 yes I have PBC. Primary Billary Cirohsis.

8 wow how do you deal with that, Which diseases do you have

​@@Kim-ss5bbmost have 6 - 8 autoimmune diseases

I had extreme dry eyes from Sjögren’s. I am much better now. I take 2,000 mg flaxseed oil, 1,000 mg black currant oil and 4 fish oil that has anchovies and sardines in it. Every day in the morning I use a heat pad for dry eyes for a few minutes. A warm compress would also work. Then I massage my eyelids. I used Regener Eyes pro 4 drops a day. I also use Refresh omega drops if needed. Dr Zucker in Santa Barbara CA specialized in dry eyes. He is an optometrist.

I first get my coffee brewing… put refresh eye drops in each eye and drink swallows of my room temp water I have ready to go. I’m stiff in the morning but moving around helps to dissipate any pain. Some idiosyncrasies with my Sjogrens is my skin is super sensitive. I have to cut out clothing tags especially in the neck area because is feels super scratchy, or itchy…. Another crazy idiosyncrasy is the top of head will be itchy. I never had these issues before .😵‍💫

Please hang in there. Keep seeing the rheumatologist. And keep on keeping on. My life wasn’t worth living until I was finally referred by my internist.

I was given early on in my Sjogren’s diagnosis Hydroxychloroquine for my joint pain. I take it daily and have barely any pain in my joints. I’ve been taking that med for 7 years now with thank God no side affects. I hope you might be able to have this prescribed for you.

Yikes… I feel blessed that I was given a rheumatologist who knew how to help me. I was put on Hydroxychloroquine which is Plaquenil for arthritic pain and mycophenolate for my off the normal scale of antibodies. I have what is called polyclonal Gammopathy. There are 5 immunoglobulins IgG, IgA, IgM, IgD, igE. The mycophenolate drug has crescendoed my high immunoglobulins. The mycophenolate drug is given to people who receive an organ transplant to keep down their antibodies so they will accept the foreign body part. Anyway, I hope I’ve been helpful.😊

When I feel the salivary gland begins to swell… I take Benadryl right away! For me that has worked, although if you don’t address it right away it can be horrible. My urgent care center is amazing. They take care of me until I can see my rheumatologist. Don’t wait till it gets too painful due to the swelling… take Benadryl first, then if that is not helping…. Go to urgent care to see a doctor! I hope that’s helpful.

Same for me, i was adviced to repeate the ssa ssb in a couple of years, that’s this year as before they came undetermined, and all other tests negative,

What type of doctor is best to see for these symptoms? I have had swollen glands for a good while and now having dry eye on the same side.

I am still doing my daily smoothie along with trying my best to eat raw foods at lunchtime. I am not getting a full pound in currently.

I have , I get rashes if I’m 30 minutes and longer in the sun and it’s painful

Yessss

She really is she looks like Yvonne stravohski or whatever lol

A test I had done showed I have a deficiency so I’ve been taking a water soluble for several months. It’s helped a lot with muscle pain.

I'm sorry you had that experience. Doctors can sometimes be vague and that is not helpful when going through a new illness. I hope you are able to find the help you need. I would recommend continuing to get bloodwork with whichever specialist you choose.

​@@HealWithSamanthamost doctors are like this....worse now in 2024....

Stephanie Long how are you feeling now? Do you still have the nerve involvement?

@@terri4353 I just went an had the muscle bi opsy dome today. That way we can see what all is going on an if it affected the muscles as well due to the weakness that the muscle teat showed an all. I honeslty am on high dose of steroids i started at 50 an now at 40. It had helped alot. But there us no right way yo treat this when it does happen. Thats the bad thing is alot of docs have not seen it so they dont know where to start. But my nero gad never treated anyone so he did some research an found out its treated like gbs. But yes it started back in late Nov i started having little spots that wad numb. Then it ended with my whole body being numb. But my sensory nerve system wad attacked so it flares like Fab or gbs or MS would. We are waiting for results if muscle bi opsy in 10 days then we will know what auto immune supressent shot to be put on an also doing ivig transfusions thats antibodies from other ppl blood to go in an fight mine an tale over an stop attacking my body. I was on humaria for 8 yrs then late oct wad put on cosentex well i got sick like you do but turned into the flu so could not take them in Nov then Oct got the flu again so was not able to restart the shots so by doing that the meds i was on to help was stopped all of a sudden an my body went crazy. Did not know what was the flu an what wad my good antibodies. My hands arew swollen an super tight so sorry about words hard to type pn a phone. This is something i would never wish on mu worst emeny. An we do not know if a reflarw up will happen if we are able to stop thr damage that is being done an let my nerves heal. There is a chance yhis is payment because they did not catch it in time i went to er 3 times before being amitted because I had a pancreatitis attack an i never drank. They said it ws from my body attacking itself. I went in the hospital this last time for respiratory failure an that wad not food during this time that was the 3rd time being amitted for this. my doc sent me from his office to the hospital we new they would send me home like they did 2 times before about the same thing. So all together i been in hospital 3 times an i was also sent home 3 times before being amitted the 1st time an then being sent home 2 times after being kept twice. It affected my breathing an eating. I did not eat from Nov to march no solids at all. I looked lile death. I had to have blood the 1st time being kept. My body was saying it was full after drinking a glass of water or mtn dew. It was insane an very scarey. They told my dad that i needed to do my will an make sure my kids had somewhere to go for good that i might not make it out the last time. Ppl think it only goes after mouth an eyes when it goes after the whole body sometimes. I lost every tooth im my mouth due to this also. Could not keep up with my teeth rotting due to how dry my mouth was before i was told what i had. Im 34yrs old an i hate it.

@@stephanielong2674 how are you doing??

@@stephanielong2674 I appreciate your recount of what's happened to you. It's an eye-opener for sure. I hope you're doing better now. Any news?

May god hear my prayers for u😊

It’s often a secondary disease to Sjogrens

I have a lot of issues with that. I’m researching to see if I might have sjogrens since I’ve been pretty sick for the last year

Yes, I've been going through that for quite a while. Do you have Sorgrens?

Yes I have problems with the thick saliva. I always have to drink water. I Just had an endoscopy and they found cancer but I don't know if the two are related or not I just need some more information

Yes...and a gastro Dr. PUT ME UNDER...STRETCHED PUT ESOPHAGUS...MOST PAINFUL THING EVER!

yes

I have horrible ear pain that seems to not subside it even swells from the inside and they also sometimes start draining and when they start draining it’s like 24/7 it’s so annoying :/ the doctor just gave me prednisone for life she said:/

Yes

Where does she mention swelling

Yes, especially when I stand in one area for awhile … like cutting up vegetables for example.