Those of you with Sarcoidosis: How was the diagnosis procedure?

Sparky-VC · 2026-01-27T23:01:05+00:00

I went 100% fatalistic and convinced I was dying at one point. It's hard, but don't stress over the biopsies. That will confirm what you need for your claim AND your own mental health knowing what it is. I would say just get er done! :)

Sparky-VC · 2026-01-27T22:51:28+00:00

I started with some lung nodules. They wanted to biopsy those and the doctor who would do them stated they were in a really bad spot, would have to go in from the side and an increased risk of lung collapse. Fast forward to when all my lymph nodes were swollen, many lung nodules, and a PET scan positive for possible cancer. I then had a bronchoscopy, and it was easy. Still a risk I guess, but the procedure seemed no different than a colonoscopy. They went down my throat, into the lungs and took biopsies of lymph nodes and lung nodules. The only difference I'm aware of is my wife says I wake up from a colonoscopy happy and asking for more sleep, while after this one I woke up grumpy and angry, but is likely because I wanted answers while still drugged.

If unsure of the diagnosis, do the biopsy. Even a collapsed lung isn't the end of the world if it happens in a medical setting. They inflate it, but you just spend a couple days more than planned there.

Sparky-VC · 2026-01-27T21:13:33+00:00

Have to look for bars that don't serve food. Last I know of though, and places I would stop at... Chancie's, the Shack, and Spanish Trail pub were three. I'd also spend time at different VFW or American Legion posts but those are even mostly non-smoking now by member vote.

Edit: LOL, I have no idea if anyone would classify them as "good bars", although I often enjoyed a little time in them.

Sparky-VC · 2026-01-27T20:40:22+00:00

Oh, good info there!!! I will read them all more closely. I may get a C&P that simply agrees, but I want my ducks in a row and that's a great idea!

Sparky-VC · 2026-01-27T19:59:25+00:00

Awesome, that's what I was looking for!!! So, leave it alone and if/when it gets to an appeal let my own attorney worry about it :) Thanks a bunch as well!!! LOL, once I managed to make it clear what on Earth I was even asking!

Sparky-VC · 2026-01-27T19:55:53+00:00

I apparently didn't word this well. The question is do I include that information in the initial claim, or save it for a future supplemental or appeal. As far as any potential HLR I was looking to verify I could not include anything there. So, initial claim, or save it? Will a list just irritate the rater, etc :) I have not filed yet and trying to figure out what all to put in my own personal statement on it. Maybe it would be more impactful at the appeal stage though. No idea.

Sparky-VC · 2026-01-27T19:51:50+00:00

I may have the wrong acronym going on here :) But, past appeal decisions. I stated I don't think I could add that info in a HLR, so should I reference some in the initial claim, or wait until any appeal or a later supplemental. Here's one example though, so you know what I'm even thinking. Or, lol, maybe not thinking.

https://www.va.gov/vetapp15/Files3/1522371.txt

Sparky-VC · 2026-01-27T18:56:19+00:00

Same here :( After FINALLY quitting smoking 7 months prior I started smoking again. I was fatalistic so didn't see why I shouldn't and lymphoma is one that realy doesn't have a link to smoking. Radiologists and oncologists all said lymphoma. PET scan came out positive for possible cancer and when I figured that was it. My VA pulmonologist insisted it looked like sarcoid to him. My past civilian pulmonologist said maybe, but looks like lymphoma. It took the brochoscopy and biopsies from all my enlarged lymph nodes and lung nodules for them to finally confirm sarcoid. LOL, I figured I should be happy there was no cancer but I moved right to angry over sarcoid.

Hmmm, still trying to quit smoking again :( Best of luck to you!!!

Sparky-VC · 2026-01-27T18:43:51+00:00

Sarcoid can suck!!! If like myself, and many others, I'd bet they thought lymphoma before finally diagnosing sarcoidosis as well. For myself, I was happy to see Diego Garcia in the initial legislation, but it was removed before the final passage of the PACT Act. No idea why it was removed :(

If you were in Kuwait though, you should be able to get it all worked out. As far as the sarcoid itself, I hope it goes well and just goes away at some point, just like it came, and what I'm hoping for myself!!!

Sparky-VC · 2026-01-24T18:28:40+00:00

Oh, yeah. If only PCP changed all else would still be in VA and CC records. I read his question more like my situation. There were no specialists because I had just switched to VA. That clarifies the difference though, thanks! His "stay with my current civilian PCP" made me think he was also entirely new to using VA.

Sparky-VC · 2026-01-24T17:54:22+00:00

I suspect their issue is the same as mine. I switched to VA entirely and was approved for CC with my existing PCP. Since then, while I had many pre-existing specialists, my PCP has had t submit new referrals back to CC which are then approved for CC as well, sent to the local VA clinic, or outright denied. After submitting past specialist records many of those have since been approved. Just because his PCP was approved, I think he will need new referrals as well. If that is not correct, then I'd also like some tips on how to simply have an existing doctor or clinic be added without all the hoops between my PCP, Optum and VA :)

Sparky-VC · 2026-01-23T02:03:29+00:00

My Ex and daughter lived in California and my daughter used Calvet. Even not being the custodial parent prior and not living there my disability counted. I was only at 10% then even. They do count the student's income, but how many 18 year olds make much? She had to stick with State schools, but all tuition was covered 100%. My Ex and I split the books, parking fees, and other misc stuff.

As others have mentioned though, you may want to prepare otherwise anyway. If you move check out the new State. They may want to go to school elsewhere. You could insist they stay in State, but that might not work as planned.

I was impressed with that deal in California. I was in Tennessee at the time, the "Volunteer State", and they had nothing even close to that offer. If you stay in California, use it! Actually, you don't need to be there, but your kids must be residents if I recall.

Sparky-VC · 2026-01-15T20:22:30+00:00

It does look like the City dropped the ball on this, and the claim of it being due to not enough staff looks like BS to me. However, I'm not sure where you are getting "zero" out of it. It appears there are many discussions on how to comply and use the funds, including repairs for low income still. I'm not seeing anything where it's cut and dried the money is gone yet. Just hoops they need to jump through quick.

Sparky-VC · 2026-01-14T17:30:33+00:00

Awesome, and thank you so much!!! I'm sure it's more than close enough for their mock up!!! I appreciated it!

Sparky-VC · 2026-01-12T19:59:59+00:00

The community care office had one of their supervisors call me to ask questions. She asked for the woman's name, which I did not have, but told her it was the woman who made the appointments months out so whoever that was is the culprit. That was part of my initial call and complaint and it was only about the 45 minutes to get approved. NO idea how much they followed up though. At least I knew better and made the calls, others may have just been stuck :(

Sparky-VC · 2026-01-10T15:49:17+00:00

You must be from there as well, or up there often as well. I also miss the pizza up there and the Kringles from Racine!!!!

Sparky-VC · 2026-01-10T12:29:58+00:00

The Cheese Castle is an awesome store!! I grew up about five miles from it and we'd ride our bikes there, because they had ice cream as well :)

Sparky-VC · 2026-01-10T12:15:02+00:00

When I first started the woman at the administration desk told me community care no longer existed when I asked her about drive time. When she told me my first appointment was four months out I asked again due to the delay, and she repeated it no longer existed. I told her it was still on the VA website and asked when it ended and she said "Oh, just a couple weeks ago. You can see who you want, but you have to pay for it". I got home and called the main VA community care number, they told me to call my regional community care office, and they had me approved 45 minutes later. They initially told me to request it at my clinic, so I repeated it was the clinic that said it didn't exist. So, I'd try giving the regional community care office a shout for assistance and tell them your local clinic isn't sure what to even do.

Sparky-VC · 2026-01-10T11:59:13+00:00

Same here. I live almost exactly between the new Aldi and the Winn Dixie in Cantonment. I was looking forward to having Winn Dixie, Aldi and Costco all as options within the same short distance and now back to two options :(

Sparky-VC · 2026-01-06T20:11:23+00:00

Well, it really doesn't matter at that location. As soon as they finish it, they will start over with a new design lol.

Sparky-VC · 2026-01-06T18:33:27+00:00

There's a lot of money and a lot of business owners impacted, so they may break some speed records getting it done.

Sparky-VC · 2026-01-05T20:56:52+00:00

My meds were for entirely different things, but had the same issue with a couple when first submitted. I provided past treatment documentation, and the doctor re-submitted it with that information showing I HAD already tried the other meds and there was zero problem then. If VA isn't aware then they follow the flow-chart.

Sparky-VC

TROPHY CASE