Thank you four this information I have sjogruns and I lose my balance a lot and I’m always forgetting stuff I should no I feel like I’m getting alzimers but now that I saw your video i think it’s cause of my sjogruns thank u Vickey and god bless you 🙏❤️

@livingwithsjogrensdisease1550

6 ай бұрын

Thank you. It's a scary feeling, can create frustration & anxiety too. God bless you too! 💜💙🩵

You’re videos are so helpful and I’m so thankful for them! My rheumatologist is the most unhelpful doctor I have. My primary care doctor tells me I’m stressed. Wishing you the best ❤❤

@livingwithsjogrensdisease1550

8 күн бұрын

Thank you. Not getting answeres & a plan is frustrating. You deserve clear, timely communication/answeres. I just found an article on Time magazine about it. I usually look for info on .org sites but this article is good. time.com/6312720/what-to-do-if-your-doctor-isnt-listening-to-you/ 💜💙🩵🩷

@LadyKestrel23

8 күн бұрын

@@livingwithsjogrensdisease1550 thank you for sharing this!

I just don't understand why even ruthmytologist ( sorry spelled wrong at is Mr. Sjogess fault) I'm really affected by this to. I'm embrassed to even talk to people ,word finding, forgetting things,brain fog,debilitating fatigue and so much more. It's taken over my life. It's really attacked my lungs to. Anyway love you sjogrens buddies.

@livingwithsjogrensdisease1550

4 ай бұрын

Love you too! I get embarrased too by the brain fog memory thing. I get very stumped on names & have to ask multiple times. 💜💙🩵💚

Thank you Vickie for your 5 videos on your symptoms. I can sooooo relate. I too should make an appointment to see a neurologist but haven’t yet. I’ve been putting it off because I just don’t want to add another diagnosis to the list; eventually I will schedule something. Sending love and prayers! xoxo

@livingwithsjogrensdisease1550

11 ай бұрын

Thank you & lifting prayers for you! 💜💙🩵🙏

@colettejaques2559

4 ай бұрын

Yes....me too....God b🙌

Thank you for taking the time and effort to make these videos. They are very informative and I enjoy them.

@livingwithsjogrensdisease1550

11 ай бұрын

I'm so glad they are helpful. Hopefully I'm becoming less wordy. Lol

Thank you very informative 👍

@livingwithsjogrensdisease1550

9 ай бұрын

Thank you. I feel glad when people are watching & relating. Hope your week is awesome as can be.💜💙🩵

Thank you. I enjoyed listening to you. Xxxx

@livingwithsjogrensdisease1550

7 ай бұрын

Thank you! Hope your holiday's awesome!

Thank you! That was very informative.🦋

@livingwithsjogrensdisease1550

11 ай бұрын

💜💙🩵

Vickie, that was very informative on Sjogren's white matter but also points on cognitive issues. I highly recommend getting a baseline with a Neurologist since it does take a long time to get in

@livingwithsjogrensdisease1550

11 ай бұрын

Thank you for encouraging me. I'm going to work on that. Will send my GP msg today asking for referral to neurology. Will post here & fb what comes of my request, k. 😊

@toryberch

11 ай бұрын

@@livingwithsjogrensdisease1550 Sounds good 😊👍

@MsLbriley

6 ай бұрын

Please do see a neurologist! If nothing else just for a baseline. I went through many different changes in sensations of feelings from brain Zaps to numbness & tingling of upper body to ouch my face skin hurts to touch. Even my hair & eyelashes . Lower body at times just numbness which has resulted me breaking my ankle a few times just upon standing . I had a nerve biopsy in ankle and thigh which was diagnosed as small fiber neuropathy. My feet and hands are insanely hot to touch . Good luck and thank you for sharing your Journey with us. ❤️

@livingwithsjogrensdisease1550

6 ай бұрын

Thank you. So scary what you're going through. I've finally got neuro appt for Jan 26th. Hoping I'm heard, believed etc. 🙏 💜💙🩵

Vickie Thanks 🙏🏻 for your Videos .. Quite informative.. I am from India & hv All the Symptoms of Sjogren' s ..

@livingwithsjogrensdisease1550

6 ай бұрын

Thank you for watching. Navigating symptoms is so hard, scary not knowing why they are happening. I hope & pray you have medical care, provider's who liston. 💜💙🩵

Do you need to go to a neurologist to help with the brain issues? I feel like my rheumatologist is just not hearing my issues with my brain problems

@jencenteno6378

6 ай бұрын

Disregard, I heard the rest of the video

@livingwithsjogrensdisease1550

6 ай бұрын

Hi there. Actually, my rhumatologest doesn't hear me at all these days. He seems to only be able to handle one problem per visit. Oddly, my Dec 2023 visit ended with me asking for low dose neltrexone. He looked at me with scrunched up face like I was crazy and loudly stated, "That's for pain!". I wanted to say, "Well da!" But I held that comment. 😕 He didn't address my neurological issues at all! He dis offer a different Sjogren's med but then wasn't willing to prescribe it. 🤦‍♀️. Then primary care referred me to neuro who paid attention. Will have MRI on 16th & otiologest prob March. I'm ready to start with naturopath Dr. Jeremy virtually, specializes in Sjogren's & dietary coach. There's an interview with him on channel, My Sjogren's Journey with his contact # in description box. Sorry this is so long. If you reached the end, thank you, we all need to vent sometimes. ❤️ 💜💙🩵

Im starting to have pulsing headache. Good grief! 🙏

@livingwithsjogrensdisease1550

8 ай бұрын

Oh my 💜, I'm sorry for your pain. Dear Heavenly Father, you are Father, healer comforter giver of life, so gracious with me. Thank you God for your goodness. We ask that clear pathways for Susan to healing solutions, for your healing touch on Susan's body for pain relief, comfort, answeres, support, endurance & hope, & joy. Thank you Lord for Susan, we trust in You & that You are already at work. In the name of your son Jesus we ask, amen💜💙🩵❤️

Vickie, do you take immunosuppressants? I have all the systemic symptoms but all my blood works come out negative. I am a nurse and I haven't been able to work for the past two years. I have all the symptoms that you have mentioned before in your other videos. All my blood works are negative so I understand why doctors don't want to give me immunosuppressants but my body is constantly being attacked. Have you ever tried immunosuppressants? Did they help with your symptoms?

@livingwithsjogrensdisease1550

11 ай бұрын

Hi. Yes, I take prednisone and methotrexate. Per my lab work im consitered to be in remission but per my symptoms im definately not. An MS neurologest who monitored me over 2 years told me that symptoms can persist even when labs are normal. Your symptoms demonstrate something is definately amiss with immune function. I took plaquinill many years, stopped due to retinal effects, help some with symptoms but not my systemic inflammation. Plaquinill is an anti-malarial & doesn't suppress immune system. The last info I read researchers don't know actual mechanism for how it works for autoimmune disfunction just that it does to various degrees. I've been watching the series of interviews with Sjogren's naturopath & dietary coach, Jeremy, done by channel, My Sjogren's Journey. I'm set on contacting Jeremy for the free half hour conceltation, not covered by my insurance, no referral needed, he coaches his patients too. Will be posting a series of videos as it goes, hopefully so others can see what it's like. I've really been helped & informed by My Sjogren's Journey, her transparency, sharing what her journey is like & interviews with naturopath doc. I'm lifting you in prayer for an unobstructed pathway to answers & solutions. I'd love to hear how your doing & how it goes. God bless, Vickie M 🙏💜💙🩵

@ji7819

11 ай бұрын

@@livingwithsjogrensdisease1550 Thank you so much for providing such a detailed answers to my question. Honestly each day is a struggle due to my symptoms and sometimes it feels like there is no hope. I have all the symptoms that you have mentioned including joint pain, fatigue, insomnia, dryness, severe tingling and burning sensation in my legs and arms and dizziness. One of my doctor prescribed me Abilify and it has helped alleviate burning sensation. That medication is antidepressant/antipsy medication, it only alleviated burning sensation. I will do what I can and leave the rest to God. Again, thank you so much.

@susanbrown2578

8 ай бұрын

I to have negative tests, and even with every symptom I cant get any help.

@bevdixon9615

5 ай бұрын

There is sero-negative Sjogren’s Disease. I am ANA positive but not the Sjogren’s markers. I have had two Rheumy’s agree I have it along with inflammatory arthritis. I am one Methotrexate and Meloxicam.

@livingwithsjogrensdisease1550

5 ай бұрын

Thank you for sharing your story. It seems rhumatologests don't always agree with eachanother. I'm glad they are treating you with medications for autoimmune disease. My hope for you is that the MTX works well & gives you quality of life. 💜💙🩵

You are more helpful them my doctors my doctors just don't get it they would make feel it was all in head I had to look up most of my sjogrens so I could save myself.

@carolmills1783

11 ай бұрын

Me too!

@livingwithsjogrensdisease1550

11 ай бұрын

Kristie & Carol, you are both precious & important, your conditions & symptoms are real, not your fault, not even one bit, and you deserve to be treated seriously & with dignity! I'm praying your needs will be acknowledged & met & a clear path to accomplishing your health needs & goals!!! You matter!!! 🙏💜💙🩵

@ji7819

11 ай бұрын

same here, one of my doctor told me I need to see a psychiatrist since all my blood test came out negative.

@livingwithsjogrensdisease1550

11 ай бұрын

Oh my gosh! I'm sorry that happened to you. Provider ignorance astounds me cuz they treat people yet so many have such poor people skills!

@susanbrown2578

8 ай бұрын

Me to, and my health is going downhill.

sjogruns is so misunderstood and under treated by doctors they have no clue to the suffering we have to indure and they just think oh you have dry eyes take some eye drops and here is some gabapentin have a nice day

@livingwithsjogrensdisease1550

3 ай бұрын

🙋‍♀️Hi, thank you for sharing. I agree with you 100%. New issues as they are occuring have been met with attitude of dismissal. ☹️ 💜💙🩵🩷

@mindhunter00789

3 ай бұрын

@@livingwithsjogrensdisease1550 yes and primary dr have no idea about any o f this and in my case iI have been in sever pain on and off dr wont prescribe predizon they dont want you taking it Just that messed up drug gabb aka nurotin bad enough your in severe pain lets make you mental with this off label seziour drug nurotin gabb there have been studies that gabb actually makes the condition worse over time i was haveinn bad side affects at 900 mg dr wanted to up it to 4000 I said no thanks

Shogrens yes, but sounds like you may have MS also. Autoimmune disease is not properly understood or treated by our medical system. Dx with fibromyalgia, Hashimoto thyroiditis, sjogrens, Interstitial cystitis, connective tissue disorder, GAD. These dx's have come over 20 years. Add them all up and most likely I have some form of MS.

@livingwithsjogrensdisease1550

4 ай бұрын

Well said. Autoimmune disease is such a tangled web, & no clear answeres. I'm sorry you've gotten so much of it over the years, I relate to the struggle, one thing after another. I too think MS is in there. Happy Easter Kristine. 🙏💜💙🩵💚

@kristinecampbell5585

4 ай бұрын

@@livingwithsjogrensdisease1550 Thank fellow autoimmune warrior. Same to you.