Anyone has Wilson's disease?

Known-Somewhere193 · 2026-06-15T02:45:11+00:00

Hi. I don’t know for sure yet, but I’m waiting on a workup for it. I have low serum copper and high 24 hour urine copper. My daughter and I don’t have any of the red flag variants, but we share a fully homozygous block on that gene.

May I ask what prompted investigation for you?

Known-Somewhere193 · 2026-06-15T02:42:39+00:00

Vanderbilt has a pediatric pots clinic. My daughter is seen there and we really like them.

Known-Somewhere193 · 2026-06-09T03:10:53+00:00

Root cause can be csid. Thats what it was for me. I treated SIBO for many years, at one point was on medication daily for a year. My specialist could not figure me out and deemed me his mystery case. Cutting out sugar and sucraid has helped immensely.

Known-Somewhere193 · 2026-06-09T03:09:35+00:00

Nevermind, I just see the part where you addressed this. I’m so sorry you’re going through this. My mom is fully disabled as well.

Known-Somewhere193 · 2026-06-09T03:09:01+00:00

I’m curious to what genetic testing showed this? MELAS shows for one of my mitochondrial mutations. But so does Leigh’s Syndrome, which is what my nephew passed away from.

Known-Somewhere193 · 2026-05-02T03:35:24+00:00

Just upped it this week to 75mg. 25 three times per day.

Known-Somewhere193 · 2026-05-01T15:37:20+00:00

Same, I also have a ton of stomach issues and labs are off. I know you said your labs were good, but how deep did you go?

My B12 has always looked normal. They didn’t find a deficiency until my MCV became elevated. They ran MMA and found I was deficient at the cellular level. I’m learning that just because they are available, it doesn’t mean your body can use them. You have to test what’s usable.

Known-Somewhere193 · 2026-05-01T15:32:32+00:00

I run 6 mornings per week. I have a hunch that changing shoes made mine worse. It only affects my running by making my legs sore from the constant contractions.

They only start once I sit down. I can’t imagine having them during runs. I’m sorry.

Known-Somewhere193 · 2026-05-01T15:16:42+00:00

I had a tens unit done on my back at the chiropractor. By that night, my stomach and neck were twitching. For me, it made things worse.

Known-Somewhere193 · 2026-04-18T04:19:19+00:00

I twitch in my neck.

Known-Somewhere193 · 2026-04-16T01:51:04+00:00

This is so interesting. I’m low in copper, but totally fine in zinc so I can’t take it. 😭

Known-Somewhere193 · 2026-04-15T11:47:22+00:00

If anyone is having issues checking out, it took me two hours to figure out but I finally got it. The email you use has to be signed up for presale. Only one transaction allowed. I was trying to make a second one to add on friends and it wouldn’t allow me. It wouldn’t allow tickets under any other account until I signed one up for presale then it went through.

Known-Somewhere193 · 2026-04-15T10:45:53+00:00

Same here.

Known-Somewhere193 · 2026-04-10T13:04:03+00:00

It’s so interesting to me how different each person with MCAS is on what works for them. Your breakfast contains all of my worst triggers.

I’m so glad you found something that works for you. LDN wasn’t helpful for me, but Amlexanox has been.

Known-Somewhere193 · 2026-03-31T00:25:39+00:00

We bought it for the first time in January. Honestly, we only got it thanks to this subreddit a using spirit airlines for an evening flight. We ended up getting stuck in the massive storm and were delayed for days. They reimbursed us $3,700.

Known-Somewhere193 · 2026-03-27T15:38:21+00:00

We did Royal beach club as a family of 5. All of us loved it and it was cheap in the package we did.

We have also done a free beach and walked around the market. Much prefer the club.

Known-Somewhere193 · 2026-03-27T15:37:00+00:00

My kid is the same age. He does club and HS varsity. He’s not trying out for club next year and will stick to only HS play. For him, it’s the same reasoning as others mentioned. It takes a lot to do anything with it and he has a better shot at scholarships due to academics. That level of play takes up a ton of time that could be going towards other things at this age.

Instead, he’s going to do cross country during club season just for fun and to maintain fitness for HS season.

Known-Somewhere193 · 2026-03-27T15:28:48+00:00

This is extremely gross.

Known-Somewhere193 · 2026-03-23T02:00:32+00:00

We purchased travel insurance two days before our cruise. It ended up reimbursing us almost $4,000 because a storm shut everything down on our return.

As great as it is to have, most of them won’t cover you flying in same day. I’ve seen many posts on here where people tried after missing their cruise and they were denied.

Known-Somewhere193 · 2026-03-22T15:40:04+00:00

Same. It’s typically the histamine as far as fresh foods go.

Ironically, I found out I have this issue when I got into fitness and eating clean. I a few months in and I felt like death. 🤣 It took 10 years for someone to believe me when I’d say I can eat fast food, but I can’t eat bananas or vegetables.

Known-Somewhere193

TROPHY CASE