My Sjögren’s Story - Diagnosis and Symptoms
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- Опубликовано: 15 сен 2024
- The ladies story “The Long Haul” link:
• The Long Haul Document...
Educational links with Dr. Goodman from Mayo Clinic:
• Sjögren Syndrome and ...
• The POTS Workup: What...
Ehlers-Danlos does NOT cause Sjögrens Disease but autoimmune diseases are often found in people with EDS.
Hey lady😁. I was diagnosed with Sjogrens 7 years ago at 43 years old. I was diagnosed only 2 months after having joint pain, fatigue, severe SOB , coughing. Doctors was puzzled on what was wrong with me. Finally after many test of different autoimmune diseases Sjogrens was positive. I’ve been on/off oxygen because I now have interstitial lung disease. I’m doing good now but am on a lot of medicine to keep me that way. Plaqunil, Cellcept, and Rituxan infusions every 6 months. God bless and it’s good to see a person telling there story of Sjogrens.
God bless you!♥️ I’m so glad you got a diagnosis and are receiving treatment for your Sjögrens Disease. Your road hasn’t been easy for sure. Keep fighting the good fight sister!💪 Thanks for sharing your journey.
Thank you for sharing your story & sharing your faith. I have Sjogren's also. God bless you & hope you are feeling good today.💜💙🩵🩷
Thank you for your kind words! I love your videos and have already watched a few!💕 God bless you!
Hello and thank you for your video! Greetings from Germany.
one more thing, use vit c and lysine together. they help build collagen in the body and it balances out the arginine in body, which, can make those sensitive to viral loads, harder to fight.
amen sister in Christ
I’m sorry you’re having to deal with this. I haven’t been diagnosed yet. My dr has not been super helpful. Sent me to neurologist but for something that I believe was way off base. I’ll be on Medicare in about 3 weeks so I can go to any doctor I want to see. I heard about Dr Goodman and was excited because I live in Phoenix area. I tried to look him up on the Mayo website but cannot find him. Praying he’s not retired. I have a question:
Where should I start? Rheumatologist, neurologist, I just don’t know but I know it’s necessary for me to get some kind of treatment.
A rheumatologist usually diagnoses Sjögrens disease. However, when I wasn’t helped by mine, I went to an ENT for a lip biopsy.
I don’t think Dr. Goodman is accepting patients, but I am not for sure. I pray that you find the help and the answers you need. It’s a tough road, but keep fighting for answers and treatment.♥️🙏
@@mannabythemountain1598 thank you for the response. I’ll definitely start with a rheumatologist. Hoping to locate one that deals with sjögren’s
much better in long run systemically to use nutritional support than medicines which always have long term side effects. Up your water, your vit e, use a superfood like noni, cats claw or pau de arco, daily multi B complex, and check your b and d levels which is an easy test to get even on your own w/o insurance. Take omegas or eat clean fish.
Dehydration both with water and lipids help exacerbate the issues, and is mainly what they think this is- a dysregulation of this balance. Make sure you are sleeping best you can, and do pilates, ballet workout, swimming or yoga/stretching. Don't let your muscles and lymph get tight and congested. Massage gun, like a thera gun (about 40-100$ at coscto and tens machine (usually about 40$) will help as well when your resting. Castor oil (sometimes called Palm of Christ) can ease sore body parts in the evening, by rubbing it on right before bed...if its too heavy/sticky for your liking, cut it with a nice jojoba oil. You can add some essential oils that make you feel peaceful, like lavender or frankincense, just dont use a stimulating one like in the mint or menthol family. Many, many people live with this condition and the key is to listen to your body, and slow down if you need to. Make boundaries with others on the days you need to just relax. Medicines and appointments can be very tedious to maintain and unless it gets severe, let thy food and prayerful mindset be your first line of defense. God Bless. Reserve medicine from doctors to last resort and use for acute symptoms. good luck on your journey.
What is up with these Drs saying no to the tests we want/need? It’s infuriating.
It was an easy test, the lip biopsy. I don’t understand either. It is frustrating when no one listens and yet you suffer with symptoms daily with no treatment.
pay out of pocket. money talks. if your using an hmo, try ppo next time or use a functional or non western doctor ent. they will do the test, it's a very simple one.
also try the baking soda treatment if your bladder/kidneys act up or your notice bladder backup. you maybe dealing with more acid in body. again, use in cycles not all the time. Eat nuts with oils and eat lots of veggies. sometimes taking a basic amino acid complex can help if you are experiencing muscle fatigue, take in Am and Mid day or 20 min before your exercise program. If you have allergies and need relief use something other than Benadryl , as this dehydrates your body.
All the comments here are helpful. I am trying to learn about my conditions. I am 59 and had a complete ascending aortic dissection.
I have vEDs, Sjögren’s, pcos, and a host of other issues. It’s often overwhelming.
@@SandrinaN Bless you and I pray 🙏 you are doing well after your aortic dissection. Having multiple medical issues is definitely overwhelming. Keep fighting the good fight.♥️
Anyone with EDS/Marfan’s should also keep up with their vitamin B12 level. If it’s low, get checked for pernicious anemia, which is an autoimmune disease similar to lupus. It’s frequently comorbid. Pernicious anemia is eventually fatal if left untreated for too long - meaning years.
Very good advice!♥️😊
Thank you