Has anyone been diagnosed with Lingual Raynauds Phenomenon

@wilmachado,
Hello! I am a 67-year-old woman. My 72-Year-old husband and I both get Raynaud's in our hands and sometimes feet. Mine was much worse in my 40s and 50s. It seems to be much less the older I get. I remember walking out into a field in winter to call a cat back home. Suddenly, a Raynaud attack hit both hands. At that point, my hands were incapable of rezipping my coat! Wearing any type of gloves only made it worse. It is a very strange symptom and can be very debilitating at times! The fact your tongue is affected is apparently rare, so I plugged it into the Mighty "Oz!" Really, the following response is Gemini AI. Let us know if you find any answers, please!
Gemini said:
That is a striking image, and it’s understandable why they are seeking answers. While Raynaud’s Phenomenon typically affects fingers and toes, it is vasospastic, meaning blood vessels tighten suddenly. Having it occur in the tongue is rare, but documented in medical literature.

Since the ENT and Rheumatologist are already involved, here are a few specific insights and questions that might help that member navigate their next appointments:

1. Raynaud’s of the Tongue
If this is indeed Raynaud’s, it is usually triggered by cold exposure (like drinking ice water or being in a cold breeze) or emotional stress.

The "Three-Phase" Color Change: Classic Raynaud's often goes from white (vasospasm) to blue (lack of oxygen) to red (blood rushing back). If they only see blue, it might be a variation or a different vascular issue.

Primary vs. Secondary: The Rheumatologist is likely checking if this is "Primary" (happens on its own) or "Secondary" (linked to an underlying autoimmune condition like Lupus or Scleroderma).

2. Identifying Triggers
The member mentioned it is "randomly recurring." It might be helpful for them to keep a "Tongue Diary" for two weeks to see if there is a pattern:

Temperature: Did it happen after eating something cold?

Postural Changes: Does it happen when they are lying down or turning their neck?

Medications: Some medications (like certain beta-blockers or ADHD meds) can actually cause or worsen vasospasms.

3. Alternative Considerations
If the Rheumatology blood work comes back "clean," they might want to ask their doctors about:

Venous Malformations: Sometimes a cluster of veins can cause localized bluish discoloration, though these usually don't "come and go" quickly.

Microvascular Issues: Since the CAT/MRI showed no arterial (large vessel) issues, the problem might be in the tiny capillaries that those scans can sometimes miss.

Vitamin Deficiencies: Though rare to cause blue discoloration specifically, severe B12 deficiencies can cause "Glossitis" or strange tongue symptoms, though this usually includes pain.

Suggestion for the Mayo Member:
They could ask their Rheumatologist: "If my blood work is negative for autoimmune markers, could this be isolated vasospasm, and are there mild vasodilators (medications that open blood vessels) that could prevent these episodes?"

It's a good sign that there is no pain or numbness, but the visual is certainly jarring. Keeping that photo log is the best thing they can do for their specialists!

Thanks for responding. Plan to discuss calcium channel blockers like Amlodipine if all the blood work comes back negative.

@wilmachado, that sounds interesting.
You are in our thoughts and hope you find an answer.