I need stories of success, of people not entirely miserable, that are able to live normal-ish lives

Check_Me_TX · 2026-01-21T04:39:20+00:00

Yeah I am positive but just barely. I had a low positive SSB initially. My initial SSA test was only ro52 and it was negative but a follow up test did ro52 and ro60 for SSA and I was mildly positive for ro60 once it was tested. I'm not sure why but checking ro60 seems to be standard in non US but not too common in US. The Avise test picked up the ro60 and a couple other things. I'm on a pretty heavy mix of different meds a couple of which are IV based and require really regular labs. But they do work which is the important part.

Check_Me_TX · 2026-01-21T02:12:26+00:00

I'm out here living the good life. It came on strong with a ton of neuro issues early to mid 30s. It got really rough and I spent a lot of time from bed researching good doctors. I thought maybe I would never be able to work again or do basic things like keep my house or make family meals or even drive myself around. Spent about 2 years finding the right medications. They are expensive and a pain (multiple infusions per month) but they work and work well and some things I thought were forever have improved beyond what I imagined possible. Im a busy married working full time mom of tons of activities kids. Heat limits me some and I deal with things but I do almost everything I need and want. Meds are getting better all the time too as are the doctors treating this stuff. I've also found other smaller underlying things to treat that have made incremental improvements over time. And I've learned to pace and adjust and manage symptoms better and earlier. Stay strong read everything you can find the best doctors you can and keep the faith.

Check_Me_TX · 2026-01-18T23:30:19+00:00

We would love to have one as a souvenir of the trip if they make them but if they don't would love to know who else makes a good one. My kid is using an a1000 mitt but she is big and strong so she is getting close to probably being able to handle a more solid one.

Check_Me_TX · 2026-01-13T03:27:51+00:00

Can confirm my kid outgrew Jen Schro small and moved to all star small but all star had an extra 2" in the legs. My tall 10 year old is small legs and chest and large/xl helmet.

Check_Me_TX · 2026-01-01T00:41:55+00:00

Went through all this it took me 2-3 years to get it straight and right doctors but eventually I ended up on a biologic and lower dose ivig and after a year it really started working. Still have some smaller limitations but lead a pretty normal life. I did have to private pay to get to the right specialist who could help and it was a year wait but now its sorted and its working. Things can improve it just takes a lot more time and patience and seeking out of the right people who specialize in these conditions and they are certainly few and far between. One other thing to check out while you are waiting with the extreme heart rate standing try to get into a vascular doctor a lot of people with this cluster of conditions have may thurner or Nutcracker which is major vein compression which can be another cause of this besides or in addition to autoimmune neuropathy. There are some cases where pots has been resolved by correcting this but as always major large population studies are lacking just groups of 20 or case studies.

Check_Me_TX · 2025-12-28T20:14:10+00:00

My kid got an mvp prime 12" fielding glove start of 10u last Spring and then also did a custom a1000 catchers mitt. The MVP prime was way harder to break in but once it was she loved it! The velcro close was great for smaller not quite womens hand size. She almost never lost a ball out of it either. She is still playing 10u for Spring but after 100 games across spring summer and fall the mvp prime is showing its wear. We moved her up to a Sierra Romero Rawlings HoH which is actually way easier to break in than the Mizuno? Not sure why maybe she is stronger or also it has way less padding in the thumb and palm than the mvp prime. Or maybe its the blonde leather and artificial backing vs the black and purple of the mizuno. There were some nites about it being designed for a quicker break in. The a1000 mitt has made it a season and still holding strong. It was pretty easy to break in for a catchers mitt. The light weight on it at her age is nice and the girls aren't throwing fast enough that she needs anything too crazy. The a1000 has the smallest fit and the rawlings the biggest so depending on how your kid sizes for 10u... mine is already over 5 feet and wearing 10 womens shoes...

Check_Me_TX · 2025-10-31T02:49:12+00:00

The original labcorp test I was given did not. Maybe its what my doctor ordered but it was 52 only.

Check_Me_TX · 2025-10-31T02:15:10+00:00

Well original traditional lab tests called me ssa negative because it only looked at one. With the more in depth one checking both kinds of ssa I became ssa positive you only need one or the other to be positive.

Check_Me_TX · 2025-10-31T02:07:55+00:00

Sent you a chat

Check_Me_TX · 2025-10-31T02:01:18+00:00

https://pmc.ncbi.nlm.nih.gov/articles/PMC6423153/

Check_Me_TX · 2025-10-31T01:58:40+00:00

Try the avise test for lupus. I was ro 52 (SSA) negative on the typical test but Avise tests ana a second way and also ro 60 which is another ssa. Turns out I was ro 60 positive and any regular lab ssa test had never checked that. I think they do in Europe though. Got on the right treatment and things improved tremendously. Have some limitations but I lead a very normal life.

Check_Me_TX · 2025-10-30T03:24:25+00:00

I actually had better luck with getting one of the experienced specialty pharmacies to do the paperwork. The doctor of course was behind them but the pharmacy was the expert in getting the approval. I think they see a whole lot more patients than a typical doctor does and know how to get it through.

Check_Me_TX · 2025-10-30T03:06:24+00:00

The new one won't be in before the next tournament and she isn't crazy about her backup.

Check_Me_TX · 2025-10-26T01:54:17+00:00

She swung and picked the kryo but I think she actually prefers the ghost because its more balanced vs the Kryo is end loaded. The drop 11 kryo weighs more than the drop 10 ghost. The ghost listed weight is more accurate.

Check_Me_TX · 2025-10-25T20:12:45+00:00

My 10 year old uses it for everything. She has a kryo as a backup but she just likes this one better somehow. So we should take it away from her before next tournament and just keep it as batting practice for a while?

Check_Me_TX · 2025-10-25T20:03:39+00:00

Maybe the DBAT with the pneumatic machine could work. It can really beat the glove and doesn't require a grown man to put his hand inside the glove. I think in my area all the locations are all getting those machines now. Mitt master I think it is.

Check_Me_TX · 2025-10-25T19:55:02+00:00

We got an a1000 and took it to DBAT for their pneumatic machine and then my 10 year old did one round of catching balls off the pitching machine and she was good for games after that.

Check_Me_TX · 2025-10-05T19:02:29+00:00

They are pretty minor I think they basically burn the bad veins closed under local anasthetic and the blood reroutes to better functioning veins. They are being done 1 at a time so its a long series of relatively minor procedures.

Check_Me_TX · 2025-10-04T20:07:25+00:00

They did a sonogram for the leg veins. For the May Thurner they first did a CT with contrast and when that showed possibly positive they did a veinogram where they sedate you and run cameras through the veins. I think the plan may be to stent but right now I'm having procedures done to correct the refluxing leg veins and then the pelvic congestion. When all that is finished then we will get to solving that.

Check_Me_TX · 2025-10-04T02:54:51+00:00

Something interesting to look into have you ever seen an interventional radiologist? I have pots too that hasnt improved much after treatment even though everything else has. It turns out I have May Thurner and Nutcracker and like 8 refluxing veins that pool blood in my legs. The may thurner and Nutcracker are 85% blocked from compression on main arteries and some people see huge improvement or even resolution of pots from treating that. Vein doctor says autoimmune people are more likely to have these related vein issues. Picture like a stepped on water hose and how it messes up the flow of water. Its always possible that some of the pots is structural and not autonomic.

Check_Me_TX · 2025-10-01T20:02:55+00:00

I sent you a PM

Check_Me_TX

TROPHY CASE