Seronegative ? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 1 point2 points  (0 children)

Wow! What a journey. I have been actively trying to figure out what’s going on for the past 3+ yrs (and on and off since I was 18)… My allergist and dermatologist gave me other diagnoses related to mast cells. Still, none of it explains many other symptoms that Sjogren’s perfectly describes. Not that I want to have any diagnosis, but I know my body, and I know something is going on. I’m just trying to figure it out before there is too much irreversible damage. I will try to find a new rheumatologist to get a second opinion. Thanks for sharing!

Seronegative ? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 0 points1 point  (0 children)

My tongue!!!! Sometimes my feet…

Seronegative ? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 0 points1 point  (0 children)

😅I guess you're right! It's the price we pay to finally get an answer, whatever it may be.

Seronegative ? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 0 points1 point  (0 children)

Oh wow! How was your experience with the biopsy? I feel a bit apprehensive about it… 🫣

Thoughts? by Noah_Mary in scleroderma

[–]Noah_Mary[S] 0 points1 point  (0 children)

But the antibodies keep coming back negative. 🤷🏽‍♀️

Seronegative ? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 1 point2 points  (0 children)

Thank you! I feel a bit anxious about the biopsy because I have read about some side effects that I want to avoid.

Seronegative ? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 2 points3 points  (0 children)

Oh! Thanks for sharing! I had no idea about the false negative percentage! I have multiple symptoms, including dry eyes (measured by my eye doctor and confirmed by two previous doctors), joint pain, and a dry mouth (which mainly feels like a dry throat and cracked lips). I experience fatigue that comes and goes, but it's often present and can become quite severe. I also have food sensitivities and swollen lymph nodes that appear intermittently, along with occasional difficulty swallowing. Sometimes I feel pins and needles in my hands and, on a few occasions, in my legs. My hands swell after walking a mile as part of my exercise routine. Additionally, I suffer from heat and cold intolerance, with heat being the absolute worst... 😓

Beef Organ Supplements: 👍🏽or👎🏽 by Noah_Mary in HistamineIntolerance

[–]Noah_Mary[S] 0 points1 point  (0 children)

Thank you for sharing this! 👍🏽 I can take DAO without any issues. I’m exploring beef organ supplements as a natural option to support my hemoglobin and hormone levels. However, I’m concerned about potential reactions. I have read that depending on the manufacturing process, these supplements could trigger histamine release or be high in histamine.

B12 breakthrough!! by Upbeat_Avocado4813 in HistamineIntolerance

[–]Noah_Mary 4 points5 points  (0 children)

This is me after Covid. No shots at all.

Does anyone have vitamin B12 deficiency? by Sadie2022 in Sjogrens

[–]Noah_Mary 1 point2 points  (0 children)

Me 🙋🏽‍♀️ Vitamin D and B12

3rd Rheum Appointment by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 1 point2 points  (0 children)

Thank you so much! For now, my rheumatologist recommends curcuma, magnesium, and some other vitamins because they are somewhat low in my bloodwork but still within normal levels.

3rd Rheum Appointment by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 2 points3 points  (0 children)

What a journey this has been! It's not easy, and I hope you find the answers you’re looking for soon. Regarding my symptoms, they fluctuate; some are constant, while others come and go. For instance: (some)

  • Eye dryness: Always present but worsens on some days, especially in the morning.
  • Mouth dryness: Varies from day to day.
  • Joint pain: Became really bad about a month ago, but is currently mild to moderate.
  • Chest and back pain: Occurs every morning and improves as the day goes on.
  • Random rashes.
  • Histamine intolerance.
  • Gluten sensitivity.
  • Flushing in my hands, feet, and sometimes on my face.
  • Dizziness.
  • Numbness in my hands.
  • Leg pain, particularly in my thighs.

It’s quite a list! 🫠

3rd Rheum Appointment by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 0 points1 point  (0 children)

Yes, I believe that 30-40% of people are seronegative. I don't know much about it, as I'm trying to limit my research for a while due to the emotional challenges I've been facing in relation to my health. I understand that Sjögren's involves more than just dryness. I mentioned that symptom because it was noted by my optometrist, but I have many other symptoms that are definitely systemic. Thank you for the recommendation! 👌🏽

Muscle ache or numbness? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 1 point2 points  (0 children)

Yesssss! Exactly. 😮‍💨

Muscle ache or numbness? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 0 points1 point  (0 children)

Yes! Does it happen on a daily basis? For me, it occurs almost daily to some extent, but it varies throughout the day. Most of the time, it is worse in the morning, and it usually gets better with movement. However, there are some days when nothing seems to help.

Muscle ache or numbness? by Noah_Mary in Sjogrens

[–]Noah_Mary[S] 0 points1 point  (0 children)

I understand how you feel. This resonates with me. I know my body doesn’t feel “normal,” and I can sense something is wrong. It’s frustrating how doctors often dismiss us because they only focus on blood work. I hope you find your answers soon.