Sjogren's Lip Biopsy Results & New Meds
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- Опубликовано: 15 сен 2019
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I'm a SAHM of 4 boys, living with a chronic illness. I also have a special needs child who suffers with ADHD, anxiety and High Functioning Autism.
My name is Meredith (aka Meri) and I'm a stay at home mom of 4 boys (including twins). I also suffer from an autoimmune disease called Sjogren's Syndrome, which makes each day a little more challenging. I am also the mom of an ADHD ODD, Asperger's child.
Like most of you out there, I'm just a regular (crazy) chic trying to survive as a mom. I'm far from perfect, but I do my best to get through each day while keeping everyone alive. I also share what works for me for managing the day to day madness of being a family of 6.
Please feel free to leave me feedback. I love to hear from everyone!
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Thank you so much for sharing your experience! This is very difficult and so many people feel like they are alone with these symptoms. Your stories help make a difference.
I’m just recovering from my lip biopsy. I’m finally diagnosed... it was positive.
I cried. Both from the results and that I was so relieved that I wasn’t crazy.
I do have RA and recently diagnosed with Crohns and EPI.
I love your videos. They help me so much❤️
I understand. Thank you so much 😊
With your lip biopsy what did you do to recover? Was the pain really bad?
Thanks for this! I appreciate your honesty!
Praying for you and thinking of you. I'm going through so much of the same. Trying not to give up.
My only Prayer is that you get Well. I Love You
I've just been diagnosed with sjorgens and rheumatoid arthritis, I first was diagnosed with autoimmune and anti-inflammatory disease or disorder...I'm in so much pain daily. The more recent diagnosis is fibromialgia and going in for a lip biopsy next Tuesday. I'm worried out of my mind...
I hope you are able to get your pain under control, I understand how much pain your in.
You are very inspirational and come across extremely strong minded. I am routing for you to a road of wellness - it will happen. Do you take any supplements? I find part of healing is exactly what you state, acceptance to a point, and yes continuing as best as you can. As difficult as it can be negative thoughts trigger the body with autoimmune diseases. I find tuning your mindset, relaxing, good eating, meditation, gentle exercise, good quality supplements, coupled with medication has helped me tremendously. Whilst I still have sore joints, pain at times, I have become accepting of it. Wishing you and your family well. Love your dog too - I smiled when he wandered in.
Thank you. I definitely have moments of weakness, but I try to stay strong whenever I can. I do take supplements and eat healthy. Anything to try to help. ❤️
I know the feeling about being bored of talking about not feeling good. I really appreciate hearing the reality of how you're feeling though. Makes me feel not alone. Hope some of the medication is useful!
I'm happy to help. Thanks for watching 😊❤️
This is the first video I watched of yours. Your frustration of not being able to have a diagnosis is the same thing I am going thru now. I've been to every kind of specialist. All say nothing is wrong. Even had an MRI. All ok. I still have all the symptoms, especially not being able to taste food. I just had the lip biopsy and waiting for the results. The tear test came back inconclusive. One doctor said I have PTSD. Sjogrens is not any easy syndrom to confirm. Still waiting...Thank you for sharing your struggle.
Stick with it. My tests were all normal too. A good doctor will realize that 1. Sjogrens is very hard to test for and 2. You know when something is not right with your body. Stay strong and don't give up.
Hey hello , i am from Spain and I am a Man Who has this fucking disease , i am 29 and I understand you 100% how you feel
I was undiagnosed for three years, and found out it was primary Sjogren's earlier this year. I had negative SSA and SSB, but I found a doctor who knew to run the early/novel Sjogren's antibody panel, and it was positive. I have to tell you that IVIG was a game-changer for me. It doesn't handle all my symptoms, but it improves my neurological symptoms (small fiber/pain symptoms and autonomic symptoms) dramatically. I'm similar to you that prednisone is the only thing that made me feel way better, but unfortunately, I developed Type 1 adult-onset diabetes in addition to my Sjogren's, so can't take prednisone anymore at all, even for flares. IVIG doesn't handle all of my issues, so I am about to start rituxan in addition, but I wanted to let you know not to give up. If the issues you're still having problems with are neuro, cardio, gi, dizziness, urinary - IVIG can be an incredible help. Thanks for making these videos - you're the only Sjogren's blogger I've been able to find, and it's good to know we're not alone in this.
Thank you so much! I'm happy you found me 😊❤️
I just had a lip biopsy yesterday and I feel good. I didn’t eat in the first 5 hours but after that I had a banana and later on some creamy soup. My lip it’s still a bit swollen but guess it’s normal. I took like 3 paracetamol pills since yesterday and i’m doing mouthwash with warm water and salt so I keep away any infection. It looks ok as I’ve seen. Just think positive and do what the doctor said and everything will be fine. I wrote this maybe someone needs it. I’m 28 years old btw. Hope y’all are safe!
I was thinking about asking my doctor about Amantidine for fatigue and brain fog. I know some are candidates and some are not, so we will see.
Hello had a question for you How long since you got diagnosed with sjogrens?
Yes, Prednisone is the only sure fire quick relief when things get really bad, but as you know it is only a very short term solution. I hope something helps you.
THanks
What does Methotrexate do that would help Sjogrens?
Heyy, I actually watched almost all your SS videos, I was diagnosed only a month ago although I've been suffering with the symptoms for nearly 9 months. The symptoms were terrible, but my rheumatologist prescribed arava (leflunomid) and advaquenil (hydroxychloroquine) and I'm gonna keep taking them for 5 years daily, this way it's hopefully go into remission for the rest of my life which means getting healed basically, I hope your doing better and if not please try these medicines, it's the best formula for sjogrens syndrome currently.
My blood tests didn't show any signs of SS, but my lip biopsy did show traces of lymphocytes due to the extreme dryness, it was a long journey for me too, please let me know if you start using the medicines, stay strong, you're not alone💛
wow beautiful job my doctors won't do it for me can you please email me back my email is kingssc@gmail.com or let us know if you have any problems with the medicine thank you
My Lip Biopsy was Focal Point 0.86...just under the mark (between 1-2). I had just ended Humira 1 month earlier. All of my blood work is all over the place too. Going to see a clinic in February that's Derm and Rheu since I also have psoriasis (even though I'm not convinced its psoriasis). Oh and I have these giant parotid glands . Its all very frustrating and I had to fire my last rheumatologist LOL. Thanks for your channel and all you do. Hang in there.
Good luck and don't give up. It took me 15+ years to get a proper diagnosis
Love your make up today beautiful 💗😊
Thank you 😊 ❤️
My lower lip stays bit swelled up n it hurts, I got the blood work for sjogren's n it was negative, also my eyes start to dry up as well. My rheumatologist says looking at all ur blood work it doesn't seem to be classic sjogren's, we can do lip biopsy. I have this lower lip swelling for few years now, it come n goes but doesn't completely go awy. Does anyone had similar issue like me?
Mine showed mildly scattered increased lymphocytes and plasma cells. Anyone know does that mean normal or does it point to Sjogrens?
@survivingasmom, how long did it take you to recover from the lip biopsy? Today marks 7 days for me and I still have trouble eating. Depending on what I eat, the pain litterally feels like day 3 all over again
Hello I’m on day 2 from the lip biopsy. Lip swollen and right side of mouth feels like I had a teeth pulled or nerves irritated. How long did it take for you to recover? What made you get the biopsy?
My blood test was positive for Sjogrens and I have scarring on my lungs that’s affecting my breathing. Doctors are now saying it’s related to Sjogrens, so that’s why I got the biopsy.
Hello just had the lip biopsy yesterday and sure enough after the numbness wore off I was in excruciating pain. Right side of my mouth is hurting like I got a toothache or nerves exposed.
Do you or anyone on here have scarring or any lung problems? Two yrs ago my CT showed scarring on my lungs and I also have breathing problems. My blood work is positive for Sjogrens. The doctors are now saying the scarring is related to Sjogrens which I’ve read online that it can be. 😟 Any input would be great.
Hope you’re doing better since you wrote this 7 months ago. My doc wants me to do the lip biopsy but I don’t want to. I take Adderall 20mg ER for the mental fog, BTW. It’s a lifesaver.
How did you find your lip biopsy? Im currently debating whether or not to do it...cause iv constant swollen glands and dry eyes and now I have ANA postive also...but my ENT is its up to me.....so confused cause im constantly tired no matter how long I sleep or rest and feeling like shit...and i dunno if all this will effect future pregnancy etc...its upsetting
Extremely painful with no clear results. Waste of time for me.
My optician diagnosed it fro the state of my tear glands. The whole thing is crap
I can identify so much with your videos. Really hoping you find some relief. I am not sure if you have tried any diet modifications. I did the Alcat food intolerance test and removed all foods that the test revealed were causing intolerances. It’s the ONLY thing that has given me relief and has allowed me to function. I need to try the CBD oil you mentioned in another one of your videos.
I have completely changed my diet. It helped a tiny bit but not enough. Thanks 😊
I have my lip biopsy this week and this scares me🥺.. so if the results say positive, what will be the next step?? Are they gonna give any treatment if salivary glands are affected?
How’s your lip now? How has the recovery been?
I have severe sjogrens to the point of insanity. i can barely fly anymore. Its totally destroyed my life HOW in the world do you have those perfect white beautiful teeth with sjogrens.? Mine look like vanilla butterscotch ice cream
I had the same biopsy results as well
I agree , her teeth are stunning ....ive never seen such a wonderful pearly white set in my life xx sorry to hear youre all unwell, but im thinking of you xx
Thanks for the compliment. I work very hard to keep my teeth healthy. I go to my dentist every few months for maintenance. I do get cavities frequently that I get filled often. I also have moderate bone loss so I get cleanings every 4 months instead of 6. My dentist and I are very aggressive with treating my teeth and gums to keep them as healthy as possible. I'm sure I'll lose them one day, but I'm working hard of prevention for now.
Thanks so much! Its nice to see all my hard work is actually paying off 😁❤️
Do you have problems getting repeated cancer sores ? I have great dental hygiene, but I keep getting these canker sores. Ugh!
I used to get them all the time, for years. Not lately though... its weird.
Why did you stop the Rituximab?
It stopped working.
How do you cope with eye pain?
I don't get eye pain thankfully. My dry eye is more significant at night. I keep a bottle of drops on my nightstand for that.
I use a ice pack over my eye. If its a migraine I will take tylenol and cup of coffee
Just curious if you have ever had your Calcium and PARAthyroid levels checks. If you would happen to have elevated Calcium and parathyroid levels it can make you very, very sick... it's a rare disease and doctors often overlook it. Just something to look into if you haven't. Good luck!
I get bloodwork every 3-4 months. The tests include those values as well. Thank you for the suggestion 😊❤️
Have you been diagnosed with sjogrens with blood work?
Biopsies usually come only after labs.
Can you do a low dose steroid like Rayos?
My doctor won't allow me to take steroids long term. I've been begging for years.
I tested positive for sjogrens can someone walk me through the lip biopsy? Am I awake for it or asleep?
You will be awake! They numb you which helps during the procedure. When the feeling comes back you will be in agony for days. I was drooling on myself from the pain. Horrible.
@@SurvivingasMom you were right! Oh my god this ish hurts.
Are your minor salivary glads swollen? Inside your lips. I have made the same mistake while on rituximab had lip biopsy.
Syndrome means it is in your head ONLY (that’s what the doctors think anyway)
weweko kowe My rheumatologist stated that the medical world have changed it to Sjogren’s Disease. From his breakdown it’s often the patient that don’t like the disease part so he just say Sjogren’s. But as of now, most run with syndrome.
I was diagnosed with Lupus/Sjogren’s and RA. It’s a monster! I also recently had a brain MRI that indicated that I had a small stroke.
But I keep smiling and keep keeping on! When asked how am I doing today; I always reply: Much better than I deserve because despite it all, that is extremely true!
I don't think my glands are swollen. Doctors usually don't get it. Stay strong. ❤️
I was on benlysta! It works great
Happy to hear it. Thanks
Did you ask if you can be enrolled in the study through the sjogrens clinic at John's Hopkins? It's the only sjogrens clinic in the world and it has new medicines for our condition. Look it up. They are on RUclips. But don't give up. Have some hope. Isaiah 41:10 says, "Do not be afraid, for I am with you. Do not be anxious, for I am your God. I will fortify you, yes, I will help you. I will really hold on to you with my right hand of righteousness."
You are not boring. You are very informative. You can get low dose naltroxene from an alternative dr. Which might be a good choice for you ar this point.
Thanks for the suggestion. Johns Hopkins is a plane ride away, so I'm not able to do that currently since I have small children to care for. Maybe when they are all older.
THank you.
I don't think you have to actually go to John's Hopkins. Your doctor needs to get in touch with them for you. Its Dr. Julius Bernbaum or Dr. Thomas Grader-beck. It can't hurt to try. And the answer is always no until you ask. Please take care.
Amen. X
Imo the lip biopsy needs to be eradicated as a diagnosis tool.
I agree. Its barbaric and inaccurate
I'm so thankful I found you and thank you so much for sharing your 𝚓𝚘𝚞𝚛𝚗𝚎𝚢, I was older when I was finally diagnosed . My kids weed all in college You're a warrior to be dealing with this as a 𝕪𝕠𝕦𝕟𝕘 𝕞𝕠𝕞.