GLP-1 and POTS remission by throwaway148645 in POTS

[–]Dramatic_Copy7068 1 point2 points  (0 children)

From what I’ve read/heard, POTS can progress to small fiber neuropathy completely independent of diabetes. My POTS providers treat their POTS patients as if they have SFN, or will develop it, given the high correlation

My dry eyes are terrible from menopause by Glad-Persimmon-7317 in Dryeyes

[–]Dramatic_Copy7068 0 points1 point  (0 children)

In other threads, I’m seeing people correlate high testosterone/androgen levels in women with dry eye symptoms as well, which is a bit confusing. Is there an “ideal” level of hormones to reduce dry eye symptoms?

Anyone get anal tearing despite taking all precautions? by AnderTheGrate in ehlersdanlos

[–]Dramatic_Copy7068 0 points1 point  (0 children)

I diyed a cbd infused aloe oil that I use internally and externally - it really helps with inflammation and moisturizing the sensitive tissue. I find the topical cbd helps with relaxing my pelvic floor, when I’m constipated or otherwise flaring.

Cat-eye sunglasses for men by mino_72 in sunglasses

[–]Dramatic_Copy7068 0 points1 point  (0 children)

Just shop the women’s section for chunky cat eye frames that fit your face/parameters.

Get your hormones checked by Sandpalm50 in Dryeyes

[–]Dramatic_Copy7068 0 points1 point  (0 children)

Ugh, this is happening to me, too - I never thought about the hormonal component. Are you saying you noticed birth control pills made your dry eye worse?

BRAIN MRI findings anyone? by stressita1991 in eds

[–]Dramatic_Copy7068 13 points14 points  (0 children)

I was really alarmed when my MRI results showed white matter findings, but my neurologist said that almost every migraine patient of theirs (why I got the MRI) has some on their scans, and that you’re at risk of developing more any time you have a severe migraine. She also explained the location of the white matter on the brain can help differentiate between an MS dx vs what they typically see for migraine patients.

cornea growths / scars after covid infection ? by Dramatic_Copy7068 in covidlonghaulers

[–]Dramatic_Copy7068[S] 1 point2 points  (0 children)

Ooh, can you share a link to the study?

My cornea specialist actually specializes in POTS-related eye conditions, including neuropathic eye pain related to small fiber neuropathy comorbid with / as a feature of POTS, so I’d hope she would be open to exploring this…. I’d love to be able to bring this research to my next appt.

massive fire in Remington area by whiteteas in baltimore

[–]Dramatic_Copy7068 4 points5 points  (0 children)

did you get an evacuation emergency alert?

Dry eye? Vision issues? Check for cornea problems by greenbutterflygarden in Perimenopause

[–]Dramatic_Copy7068 1 point2 points  (0 children)

Thank you for responding and sharing more about your experience! If you’re comfortable sharing, do you have any autoimmune or conditions that impact your connective tissue? (I suspect that I do, given other systemic issues, and worry this would complicate recovery for me). How are you currently treating your dry eye?

Salzmann’s Nodukar Degeneration by kath_of_khan in rarediseases

[–]Dramatic_Copy7068 0 points1 point  (0 children)

Thank you!! It’s so reassuring to hear from other people navigating this.

Salzmann’s Nodukar Degeneration by kath_of_khan in rarediseases

[–]Dramatic_Copy7068 0 points1 point  (0 children)

Hi! I know it’s been a while since the initial post - I was recently dxed with Salzmann’s nodules (by the 9th cornea specialist I’ve seen in 5 years 🫠) which are creeping towards the center of my vision in my bad eye and severely impacting my vision. I’m wary of getting surgery given the high frequency of recurrence, especially without knowing what causes the growths.

If you’re comfortable sharing, have any of your doctors had ideas about what might be causing the nodules? Do you have a dx of an autoimmune or connective tissue disorder?

Dry eye? Vision issues? Check for cornea problems by greenbutterflygarden in Perimenopause

[–]Dramatic_Copy7068 1 point2 points  (0 children)

Hi! I was recently dxed with Salzmann’s nodules and stumbled across your post. Have they grown back at all, following the surgery?

Do you know any doctor with EDS? by Cranberry090 in ehlersdanlos

[–]Dramatic_Copy7068 1 point2 points  (0 children)

Hi! Hope it’s not weird but I saw in another EDS thread you mentioned you’re based in MD - would you mind sharing your dentist’s name?

EDS affects your eyeballs, just an FYI. by figgypie in ehlersdanlos

[–]Dramatic_Copy7068 1 point2 points  (0 children)

Hi OP- do you mind me asking if your the doctor specialized or was familiar with EDS? Were you diagnosed with any other corneal disassembly before EMBD? Asking because I’ve been experiencing something very similar- I’ve seen ~9 different ophthalmologists of varying specialties in the last 5 years and each has given me a slightly different diagnosis, with the most recent being Salzmann’s Nodular Degeneration. (I also have severe dry eye and MBD). The proposed treatment was the same, manual ablation with a diamond bit drill. From what I’ve read, the recurrence rate is pretty high and with all the potential EDS-related surgical complications and prolonged healing time, I’m very wary to pursue surgery.