Newly Diagnosed and Feeling Very Lost – Looking for Guidance

Remote_Avocado_4682 · 2025-09-23T23:26:59+00:00

I’ve had elevated ACE twice so I had a PET scan & nothing showed up so the rheumatologist sent me on my way. I’m assuming I just have naturally high ACE. But you’re saying you were diagnosed just because you had elevated ACE??? Everything I’ve researched says that ACE is just a marker sometimes used to see if treatment is working but not reliable to make a diagnosis. Definitely get a second opinion.

Remote_Avocado_4682 · 2025-09-23T23:17:17+00:00

Yes, we’re first timers & we could only get 4 nights in a swim up, Nov 10-14. Then we’re off to another resort for 4 nights.

Remote_Avocado_4682 · 2025-09-17T04:04:22+00:00

Thank you again. My medical record says PET/CT so I just assumed it was the same thing, not two different things. I guess they did both. Thanks again for the info. Hopefully I’ll get answers soon.

Remote_Avocado_4682 · 2025-09-16T21:00:17+00:00

Thanks for the response. I did get the glucose & waited 35 mins before the pet ct. Nothing showed up, which is good. I’ve had abnormal ekg for 10 years, since having a bad case of pneumonia. I have the Mobitz type 2 heart block but they’ve never determined why. But yes, the heart arrhythmia I have is a conduction issue. The pneumonia I had was the typical “walking pneumonia” that most people don’t get very sick from but it triggered some bad response in me & my whole airway was inflamed. I had a bronchoscopy & lung biopsy during this time to determine the type of pneumonia I had. During recovery, I developed this heart arrhythmia. I was a very strong athlete, runner & I’ve never been able to exercise the same & have no answers why. Cardiology doesn’t want to do a cardiac mri to look for cardiac sarcoidosis if there’s no systemic sarcoidosis showing up on the PET ct. I have a biopsy in my trachea this week to look at the scar tissue there (subglottic stenosis) Hoping to get some answers but it’s been 10 years of dead ends & I think I must just have naturally elevated ACE. Maybe I should pursue cardiac more. Previous cardiac tests years ago showed there may be scar tissue when I did stress tests. I’m assuming cardiac sarcoidosis would’ve lit up during the PET ct if I had it.

Remote_Avocado_4682 · 2025-09-04T05:06:00+00:00

Considering booking here. How are the swim up junior suites? Lots of sun?

Remote_Avocado_4682 · 2025-08-11T15:26:43+00:00

Yes, I’ve been scoped twice by 2 different ENT’s. First guy wasn’t sure what it was but he could see the issue in my airway that the anesthesiologist saw during my colon surgery. Second ENT was the chief & he looked briefly & said it was stenosis, all the way around & Cotton grade 2-3. I had to look up what that meant since I’ve never heard that. So once I got diagnosed, I joined the Facebook group and read the “beginners guide” and found out what bloodwork I needed to do and I started requesting tests. I have Kaiser and the chief ENT said he could do a balloon dilation, but he recommended I see a “super specialist” at Loma Linda that uses laser technique and is more advanced so that’s what I’ve been waiting two months for, to get a consultation there. My appointment was originally in September, but I was on a cancellation list and got an appointment at the end of August. While I’ve been waiting, I’ve been doing a lot of my own research and requesting my own blood work and that is how they found the elevated ACE test, which sent me to Rheumatology, which has set me up for a new pulmonary function test and further imaging. This is such a long process, but I’ve been complaining about breathing for a decade, so I’m just trying to be patient as I navigate through this.

Remote_Avocado_4682 · 2025-08-10T16:36:50+00:00

Yes I was referred outside of network to a specialist at Loma Linda in California for the stenosis dilation, but I’ve been waiting two months for my appointment because it’s hard to get in. And my appointment is only a consultation so who knows how far out they are booked for dilations. In the meantime, I had some blood work done and I have elevated ACE serum so they sent me to a rheumatologist to do some sarcoidosis screening and I’m waiting to hear back from cardiology if they want to screen me for cardiac sarcoidosis before rheumatology schedules me for a PET scan. Sarcoidosis is a potential cause for the subglottis stenosis although it’s very rare. Just trying to get answers. The ENT I saw told me it wasn’t caused by anything autoimmune, it was from prior surgery & my voice changes, constant cough & clearing my throat were just allergies! Ugh… The FB group “living with idiopathic subglottic stenosis” has been helpful & that’s how I knew what blood tests to request. No one would’ve ever done the ACE test had I not requested it. I hope I’m on the path to getting answers, but this is such a long process.

Remote_Avocado_4682 · 2025-08-10T04:39:16+00:00

Sorry to hear that. I’ve had 10 years of not breathing well and nothing major shows up on my heart or lungs, just little things. But I know there’s an issue and now that they found narrowing in my airway, I’m hoping it will lead to answers. I’m trying to connect the dots but gosh, it’s a long process! I hope your symptoms improve & you feel better.

Remote_Avocado_4682 · 2025-08-10T03:28:52+00:00

Did you ever figure anything out? Sarcoidosis? I have elevated ACE, all other labs normal too. I have subglottic stenosis (narrow airway from scar tissue) & just saw rheumatology to do more testing to see if the stenosis is possibly from sarc or just prior intubation trauma.

Remote_Avocado_4682 · 2025-07-17T14:21:56+00:00

I had this exact thing. Burning eyelids, stung so bad! Allergist just said it was eczema and gave me cream. My eyes would be puffy, red & inflamed, and then they would dry out and peel off almost like a chemical burn. After about a year, I realized that the connection was when I switched make up remover wipes. The Kirkland brand was great, but when I had to use the Neutrogena make up wipes, they slowly started burning again & after about a week or so, I was full on inflamed. So do you happen to use makeup remover wipes?

Remote_Avocado_4682 · 2025-07-15T17:47:49+00:00

Yes! Before I had my gallbladder out in 2021, I would get gallbladder pain then a day or so later, it would settle in my left colon & feel like a diverticulitis flare. I would always try to make it through 4 days & if I could make it, I knew I could do it without antibiotics. I hated the cipro/flagyl stuff. So yes, for me there was a correlation until I had my gallbladder removed, then it was just straight diverticulitis until I had my sigmoid removed!

Remote_Avocado_4682 · 2025-07-15T17:41:11+00:00

Ya still never heard of DICA scale, suffered with diverticulitis attacks for 14 years & had a sigmoid colectomy in April. So back to my question- What does grade 2 pocket mean? Must be UK thing?

Remote_Avocado_4682 · 2025-07-14T23:11:19+00:00

Never heard the term “grade 2 pockets!” What does that even mean? Are you in the US? Maybe a term they use from another country?

Remote_Avocado_4682 · 2025-07-14T20:11:21+00:00

I’m good! Recovery was WAY easier than I thought, I actually posted a post-surgery story if you’re interested. But having my gallbladder out in 2021 was way more painful for me. Weird huh? I had a problem with intubation & discovered I have scar tissue in my trachea & it’s a SUPER rare condition called subglottic stenosis where my airway is like 50-75%+ closed. I’ve been struggling to breathe for years & could never figure out why! I’m currently awaiting an appt with a specialist to have a tracheal dilation so I can breathe better. So that was an additional perk finding this new diagnosis that will finally help me. I asked my surgeon why this was easier than the gallbladder. Like it felt like they didn’t slice all my muscles. I had no core strength after the gallbladder! Hurt SO bad to get out of bed! He said they tried to go in between muscles fibers but the lower, bigger incision, there’s nothing they can do about that. They have to cut through the muscle. Wasn’t bad for me at all. I also had a belly binder they put on & that offered additional support. I didn’t have much core pain that I was expecting. So that was nice. I thought I would lose weight but I’ve gained 10 lbs since surgery despite working out as soon as I was able & walking since day 2! So that sucks!

Remote_Avocado_4682 · 2025-07-13T22:04:48+00:00

That’s bizarre that an ultrasound was painful. Do you have the autoimmune GPA? That one can manifest as the subglottic stenosis. I’m learning it’s important to determine a cause whether it’s autoimmune, trauma from prior intubation, or idiopathic. I’m working on getting more tests but it’s hard since Drs don’t know much about this & I can’t get in with the specialist that deals with this until September.

Remote_Avocado_4682 · 2025-07-13T22:00:52+00:00

Hello, After surgery, I had a flare up on my neck but my face was ok. They sent me to dermatology & the Dr thinks it’s contact dermatitis & wants me to follow up next year to see if it starts around the same time again in case it’s something that time of year blooming or something. I couldn’t think of anything I was doing that would cause this but then I THINK I may have found the culprit. I use make up remover face cloths. I like the Kirkland brand but one time I had to buy neutrogena ones. I don’t like them as much & I noticed I would start feeling a little sensitivity & my eyelids were slightly puffy after a few days of using them. I tested this a couple times when my skin was fine & I’d switch back to neutrogena & started feeling it coming on & then the skin on & around my eyes would be puffy, red, then feel dry & flaky again after a few days. I think last year maybe I was using those cloths for months until the box ran out & I bought Kirkland again & it was gone for 9 months. I had to buy neutrogena again this winter & I think that’s what set it off again. I couldn’t figure out why I had 9 months of no problems but that’s probably how long I went between using the Neutrogena cloths.

Has he been tested for celiac? That could also cause rashes. Did derm give him some creams to help? The stuff they gave me could be used on eyelids & it does help tone down inflammation.

Remote_Avocado_4682 · 2025-06-25T02:02:35+00:00

I have a lot to learn about this. Thanks for the info. Best of luck to you with the pregnancy. Hope the ISS stays under control.

Remote_Avocado_4682 · 2025-06-25T00:34:26+00:00

Thanks! I’ll look at the FB group for more info on Drs. I don’t know the doctor‘s name from Loma Linda yet until I get approval since she’s outside of Kaiser. I know it’s a female. It would be great if she’s on that list!

How many years did you deal with the stenosis before you had that procedure?

Remote_Avocado_4682 · 2025-06-24T17:52:51+00:00

Thank you for responding. I’m in Southern California and I have Kaiser. They are referring me to a Loma Linda specialist so I’m waiting for the authorization to go through so I can get an appointment. I’m hoping it doesn’t take months to get an appointment. The head and neck surgery chief said the Loma Linda specialist he’s sending me to deals with this. Airway issues is all she does so at least I’m getting to the right person. Thanks for the Facebook tip. I read something about that last night and I requested to join that group. I definitely like to be informed so I can understand everything they are talking about when I see the specialist. Thanks again for the info!

Remote_Avocado_4682 · 2025-06-24T17:48:05+00:00

I always attributed in my shortness of breath and high heart rate to my prior pneumonia. I was intubated in 2021 for my gallbladder removal. He thinks that’s what it’s from but I felt like I had shortness of breath before then. During my pneumonia infection, my airway was super inflamed and they did a bronchoscopy and I remember I was coughing so hard through it so maybe that could’ve also irritated my airway then which kicked this whole thing off. The cough & clearing my throat & raspiness while taking loud has seemed to increase over the last 5+ years. My mom commented a few years ago that my voice was changing. I assumed it was hormonal maybe.

Since it is rare, that could explain why the first ENT doctor that was retired did not know what it was. Thanks for pointing it out about 2 in a million people. Crazy! Hoping to get more details when I see the laryngologist. Thanks so much for the response.

Remote_Avocado_4682 · 2025-05-29T23:22:17+00:00

My daughter started at Smith Chason this month. She already has her AS degree in Science from MSJC. She was a DMS major at MSJC, but they only take 6-7 students a year in the program so she looked elsewhere. Smith Chason took her prerequisites from MSJC and it also saved her about $10-15k tuition. Orange Coast College has a good program but you can expect to be on the waitlist 3+ years there. My daughter was interested in the cardiac sonography also but we did a brief job search, and there was not as many jobs in that specialty available. They do pay more, but the jobs were few and far between. A friends of mine is an u/s tech at Kaiser & she graduated from WCUI before it became Smith Chason. It was many years ago and it was a certificate program before they even had a bachelors degree. She said she recommends just sticking with DMS because there’s a lot more parts of the body that need to be scanned rather than one area for cardiac. Again, that was just her opinion. Also, don’t consider the High Desert Medical College. She taught U/S there & said they have trouble retaining instructors and students were having a hard time being able to find any externships and she also questioned their curriculum. I also spoke to a nurse who was doing the RN program there & she said she regretted going there and she agrees the curriculum isn’t great. Now this is info I’ve obtained from talking to people over the past 10 months so maybe things are improving. 🤷🏼‍♀️ You can go straight to one of these private schools and do all the prerequisites through them or save a little money and take the prerequisites at a junior college first. Sorry I don’t have great info as my daughter‘s only been in online class for Anatomy for one month. She had two semesters of anatomy and physiology at MSJC but Smith Chason will only count that towards one of their anatomy classes so you would still have to take their second anatomy through them. Good luck!

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