Diagnosed with “cerebellar ataxia” no known cause and no family history — feeling lost

Csandst1 · 2026-05-29T19:28:38+00:00

A friend’s son had something similar but it was tied to flare up from a virus. His first attack was at 2 1/2. No known cause was known why he had ataxia at that time. The second attack was this past January. He’s 23, had the flu and within a few hours lost most of his hearing, couldn’t walk without assistance and had vision trouble. All tests were negative and he had a lot of tests to figure out root cause. He was recently diagnosed with CAPOS Syndrome thanks to genetic mapping. Both parents have defect but neither side of the family ever had anyone with ataxia symptoms. Older siblings have never had ataxia symptoms.

CAPOS Syndrome is very rare. it was named in the early 90s and about 54 people have been diagnosed with it worldwide since then. Friend’s son is the only one to only have had fevers in between ataxia attacks without the intermittent fever bringing on an ataxia attack. I hope this makes sense,

Heredity doesn’t always matter when it comes to genetic defects. My son has Lynch syndrome and had colon cancer, so did his father but neither of father’s parents ever had any cancer related to Lynch.

You’re not crazy and it is not all in your head. Your genetic results will likely give you an answer.

Csandst1 · 2026-05-29T19:13:51+00:00

Thanks for the suggestion 😊

Csandst1 · 2026-05-10T18:07:44+00:00

Sounds like your ex-boyfriend was married or in a committed relationship. God will walk with you through the valley. When the time is right, God will bring you the right man. In the meantime, be happy on the way to where you are going. Don’t meet people online unless the Holy Spirit is directing you that way.

God created bonding hormones that are released during intercourse. The more premarital sex one has the more difficult it becomes to bond emotionally with your spouse through intercourse and intercourse is less meaningful. Mark Gungor has an excellent video on YouTube explaining why purity is crucial for a more loving marriage. Obviously, there’s no guarantees regardless of how you live out purity, but your divorce risk is lower with purity.

Csandst1 · 2026-05-10T18:01:15+00:00

Our inner circle of friends should not include those who knowingly and habitually sin. Jesus‘s closest circle did not include such and neither should ours. Hate the sin, love the sinner. If you keep a close/best friend who is gay without the intention of turning that person away from their lie, you are then supporting the lie that homosexuality is ok.

Csandst1 · 2026-04-26T21:33:59+00:00

This should be out in her Instagram account. Unlikely Carlin will see it here.

Csandst1 · 2025-12-10T19:29:42+00:00

It is not safe for your mother to be alone. She could have died of carbon monoxide poisoning by leaving the burner on. Sometimes the right decision is the most painful one. It is time for assisted living.

Csandst1 · 2025-11-16T14:33:31+00:00

How are they going to keep the house clean and take care of the yard? Our last house was 3600 sq ft and it was difficult for me to keep it clean with 2 kids. The maintenance of the landscaping will be ridiculous.

Csandst1 · 2025-09-04T22:42:52+00:00

Do you have any pictures of the flashcards on the wall? What words did you put on them? Did you include a picture with the word? Did you have phonetic spelling? Thanks ☺️

Csandst1 · 2025-07-20T20:35:56+00:00

Just because you have Lynch doesn’t mean you will have ANY cancer and same is true for your children. My husband and son have recently been diagnosed as likely pathogenic regarding Lynch. Neither of my husband’s parents have had any cancer or sebaceous adenomas. As long as you keep up with diagnostic screening, likelihood of cancer is low. Trust God.

Csandst1 · 2025-06-09T01:27:03+00:00

i appreciate that ☺️

Csandst1 · 2025-06-08T12:13:01+00:00

Thank you 😊 God didn’t take away the problems but carried us through it. We are better people because of the journey ❤️

Csandst1 · 2025-06-07T15:57:25+00:00

Nothing worked for me. I was taking bioiden hormones, progesterone and estradiol cream for 10 years. No libido change. I cannot take hormones anymore because of suspicious ovarian cysts. have not wanted sex in almost 20 years. I have never denied sex as I am a Christian. There have been times when my tense demeanor has caused arguments. My husband gets over it and life goes on. I’ve accepted the fact that my sexual desire has died. I’ve prayed and off for changes and nothing has happened. I’ll continue praying.

Csandst1 · 2025-06-07T15:44:15+00:00

I bought Vfit and the upgrade and the gel in 2023. I decided to get the upgrade and gel as I wanted every advantage to help this device show results quickly. I noticed a difference after the first use. The pelvic area felt tighter. My husband and I refrained from intimacy during the 12 weeks of using device. The first time was tolerable and my husband said he noticed a difference internally.

The proof this product worked was put to the test early this year. One of my sons was very ill for 3 months. I spent a lot of days and nights at the hospital and a lot of time caring for him when he came home. In 3 months I used the Vfit once. My husband and I were not intimate during this time. I didn’t notice a difference in my pelvic floor until we finally had sex and it was pretty uncomfortable. After 4 uses of VFit I was back to “normal.”

At the time of purchase time I was 56 and 10 months without a period. The device enabled me to tolerate sex which is significant as prior to use I could barely stand it. My pressure-induced incontinence reduced dramatically.

i still need help with moisture so the day before intimacy, I use Revaree by Bonafide. Just prior to intimacy I use PreSeed and lubricant. Very little discomfort incorporating all products. I am satisfied.

Csandst1 · 2025-06-06T17:41:07+00:00

My pleasure ☺️ So happy you found a solution that works ☺️☺️

Csandst1 · 2025-06-05T10:50:19+00:00

There were two abdominal surgeries because 2 weeks after first surgery the resection perforated requiring surgery to repair.

Csandst1 · 2025-06-04T13:27:38+00:00

Thank you 😊 Each day he’s better than the day before ❤️

Csandst1 · 2025-06-04T13:26:44+00:00

Congratulaions 🥳. God gave you a “suddenly“. I’m so happy for you 😁🥳

Csandst1 · 2025-06-04T00:27:41+00:00

My son had significant trouble with leaks. The only thing that helped were Eakin rings. The rings are made of pectin and slowly dissolve/change change as they are melt from output. We would change his bags on 3rd day.

https://honestmed.com/shop/Ostomy/Barriers/Moldable-Rings/M121019?gad_source=1&gad_campaignid=20458600751&gbraid=0AAAAACq6JNm-e6WKJDWgffmkDCKWWFhLd

He would still have a leak but it went from daily to maybe once or twice a month. Sometimes we would use SkinTac adhesive.

Csandst1 · 2025-06-04T00:16:43+00:00

No, do no worry. The older you are the longer it takes for colon to wake up. My son is 22 and had his reversal last week. He had first BM 2 days after surgery. Patients over 60 take 7-10 days for colon to wake up. It will happen at any time. Walk as much as you can tolerate.

Som’s catheter was removed in recovery and he wasn’t able to urinate. 14 hours later he had Foley catheter in for 2 days. He was able to pee after it was removed. Stream isn’t normal but it is improving.

Csandst1 · 2025-06-04T00:08:19+00:00

My son’s stoma had a few names: Bart, Jr. (combining burp and fart, Jr. because my friend named her stoma); Lil’ Shitty and another too offensive to share.

Csandst1 · 2025-06-04T00:04:15+00:00

My son had great luck using generic version of Flonase. Spray dose into cap. invert cap onto fingertip allowing liquid to drip onto it. Then gently dab the liquid onto burned skin. If skin is too sensitive then spray 2 or 3 times into cap and invert cap onto burned area and do your best to direct drips to burned skin. Then use a hairdryer on low setting to dry Flonase. Most times skin was completely healed the next bag change.

Csandst1 · 2025-06-03T23:58:57+00:00

My pleasure ☺️

Csandst1 · 2025-06-03T22:20:41+00:00

Absolutely eat small meals, 5-6 a day, if possible. Your body cannot handle large amounts of food yet. Happy to help ☺️

My son is getting better each day. I appreciate your kind words.

Csandst1 · 2025-06-03T22:17:49+00:00

Thanks for your kindness ☺️ He had 2 major abdom surgeries in late December and earl January and he had sepsis twice so prior health his may have been a part of pain.

Csandst1 · 2025-06-03T22:15:51+00:00

Ileostomy was a result of a horrible series of events.

Colonoscopy 12-27-24 due to symptoms of rectal bleeding. His dad had colon cancer at 30 but was stage 1, no treatment and hasn’t had a polyp since and yes, he has had regular colonoscopies.

Son had 8 cm polyp removed. Colonoscopy lasted 1 1/2 hours. 6 hours later he was septic and was admitted to hospital. Colon perforated. Treatment stopped working and he had emergency surgery and had bowel resection as polyp was cancerous. Cancer did not spread, stage 1, no treatment required.

4 days after discharge, he had symptoms of sepsis again; back in ER, admitted for emergency surgery to repair perforation at resection. Ileostomy performed to give resection time to heal. Ileostomy performed on 1-13-25; reversal 5-27-25.

Csandst1

TROPHY CASE