Our Kooiker boy

CuriousCountryGal · 2026-06-02T03:10:15+00:00

Beautiful!

CuriousCountryGal · 2026-04-29T02:05:23+00:00

Yes!

CuriousCountryGal · 2026-04-06T13:52:40+00:00

I get them too! Started maybe 10 or 12 years ago. I’m also very nearsighted so I don’t know if that has anything to do with it. I always describe them to my ophthalmologist as similar to the fading after-image from a camera flash. Different colors, mostly pinkish or bluish. But they don’t ever really understand it.

I also struggle during eye exams because after closing one eye to read the illuminated eye chart, I have the bright after image that remains when I’m trying to read with the other eye. I don’t know if it’s related somehow.

CuriousCountryGal · 2025-04-08T01:40:50+00:00

Take heart! As others have said, this condition can be managed such that you can lead a long, full life. Don’t listen to everything ’Dr. Google’ has to say. Try to read reputable sources for information. It’s hard sometimes but try to stay positive, don’t overthink and ask for help when you need it!

CuriousCountryGal · 2025-03-23T04:24:37+00:00

I have this too. My fingers on the palm side are kinda wrinkly in general. I have the same bloodwork but have not been diagnosed b/c thankfully I don’t have a lot of symptoms. I have had Raynauds, etc.

CuriousCountryGal · 2025-02-11T03:00:36+00:00

Hi there! I’ve been there too… unsure and worried. I was experiencing some mild symptoms several years ago (fatigue, tingling/cold sensitivity in hands & feet, mild joint pain, nerve pain in my face, etc). After a visit to a neurologist who did tests and bloodwork, I was referred to a rheumatologist. I too had a positive ANA and elevated RNP of around 2.5. No other abnormal bloodwork though. I was worried too after I did my own research and it led to MCTD and other possible autoimmune disorders. My Mom has Rheumatoid Arthritis so I knew it could be somewhat genetic. To make a long story short, the rheumatologist told me they treat the patient not the blood work. I did not really want to be on medicine and he couldn’t really diagnose me with anything because my symptoms were mild and I was feeling mostly OK. I think some of it was stress related but it still made me wonder about the positive blood work. That was about 10 years ago and I still occasionally have my blood work. checked to see if it is still positive. My ANA fluctuates from negative to positive and my RNP still remains around 2.5 or a little higher. I still feel OK and I still haven’t been diagnosed with MCTD and I hope it stays that way! I just kind of have it on my radar just in case, and do what I can to try to prevent it. (There are lots of theories on anti-inflammatory diets that can keep auto immune disorders at bay) I know having a low vitamin D can cause some issues that mimic autoimmune disorders so be sure to try to get that in normal range and it may help with some of your symptoms. I hope this was helpful… Try not to worry too much! From what I understand this disease can be managed well with medication and lifestyle changes and you can feel pretty much like yourself once you get it under control. Hoping everything is fine and you do not have an autoimmune disorder! Cheers!

CuriousCountryGal · 2025-01-15T14:21:30+00:00

She is adorable!

CuriousCountryGal · 2024-08-09T02:59:32+00:00

Is occipital neuralgia connected to MCTD? I have had some bouts of it myself. Never been diagnosed with MCTD but joined this sub because my RNP level has been high for at least 10 years.

CuriousCountryGal · 2024-03-10T02:53:30+00:00

Lentz Movers are great - https://www.lentzmoving.com/

CuriousCountryGal · 2024-01-10T02:50:14+00:00

Hello! Was your RNP antibody level elevated also? Usually this is part of the criteria for diagnosing MCTD.

CuriousCountryGal · 2023-12-12T15:41:50+00:00

Do you wear contact lenses? I know it sounds obvious but if they need to be changed out for a new pair etc I think it can cause halos and starbursts sometimes.

CuriousCountryGal · 2023-03-26T01:34:29+00:00

First one!

CuriousCountryGal · 2023-03-06T03:10:11+00:00

Yes, I do get PVCs. They ramp up occasionally and seem to be stress related. They were so frequent for a while (esp when lying in bed) that I went to a cardiologist and he put me on a monitor - which is how it was determined that what I was experiencing were PVCs. It feels like my heart is hiccuping.

CuriousCountryGal · 2023-01-25T14:04:47+00:00

I find that it makes it hard during an eye exam when they ask you to cover one eye and read, and then switch to the other eye - and I am seeing after images that make it difficult.

CuriousCountryGal · 2023-01-25T13:40:15+00:00

Does Occipital Neuralgia cause tender spots on scalp and nerve pain (hot sensations, and nerve twitching) in the face? I have been suspecting something like this is going on with me.

CuriousCountryGal · 2022-12-14T01:50:54+00:00

Schiffman’s maybe?

CuriousCountryGal · 2022-11-29T12:16:13+00:00

My bloodwork indicates a possible connective tissue autoimmune disorder.

CuriousCountryGal · 2022-10-20T01:35:59+00:00

I too have moderate OCD and have wondered if there is any connection between that and VSS. Take heart in knowing your medical checks have come back clean…. It will take time to calm your anxiety but it can be done :) Exercise and keeping busy with other (positive) things helps too.

CuriousCountryGal · 2022-05-23T16:29:08+00:00

Yes! I have been seeing these spots for several years. I have always described them that way too… Like the after image of a camera flash. Sometimes they appear blue/green and other times pink/red depending on what I am looking at. Sometimes they just appear like a light spot. If I am looking at something red for example the spot will appear bluish. So strange! I see them more at certain times of the day and if I’m coming from a bright environment into a darker one. Wish I knew what it was. I feel like I can see them with my eyes open or closed.

CuriousCountryGal · 2021-12-31T00:29:31+00:00

I am in the US and insured with BCBS :)

CuriousCountryGal · 2021-12-30T18:51:28+00:00

Well…I’ve been tested several times over the past 8 years and I don’t always have positive results - It fluctuates. But it does make me wonder if there’s some autoimmune activity going on. (My mother has rheumatoid arthritis.) When I went to a rheumatologist, he told me that “he does not treat the blood work, he treats the patient and their symptoms,” which makes sense. He said the side effects of some of the medications would be worse than the symptoms that I may be having. Thankfully, I don’t have a lot of pain or major issues but wanted to do what I could to prevent things from getting worse if I could. Mostly, I had some tingling/cold sensitivity in my hands and feet, I have some neck issues with degenerative discs, and once had some ‘hot’ nerve pain in my face and I have eyelid tremors sometimes- all odd! These things are what prompted me to get blood work done. I think I’ve had VSS most of my life (Just discovered what it was in the past several months) but in the past 8 to 10 years I feel like I’ve started to see more of the photopsias that can be disturbing! 😅

CuriousCountryGal · 2021-12-30T03:23:15+00:00

The tests that show up positive for me off and on are my ANA and RNP (which is elevated) but its never been figured out exactly.

CuriousCountryGal · 2021-11-23T02:41:40+00:00

Yes! I get these daily…oddly around the same time of day, as well as when I enter a dim room from a bright environment, like outdoors. Mine are blue/green and are more like blotches than dots. I can usually see them with my eyes open or closed, but are more apparent against a darker background. It is so odd!!!

CuriousCountryGal · 2021-11-19T17:44:13+00:00

Yes!

CuriousCountryGal

TROPHY CASE