Posts by Nicholas Davis4

Hi everyone!
I’m usually over on the systemic lupus forums since that’s my main diagnosis, but lately, something else has been really bothering me, so I decided to jump over here and ask for some input.
It feels like I can't get enough air. It’s that sensation where you desperately want to take a deep breath or let out a big yawn, but it just won't happen. It’s like my ribs are clamped shut and won't let me expand. It’s honestly terrifying!
The first time this happened was way back in '95—it was rare, maybe once a year, and it passed quickly. But now, it’s been happening constantly since Saturday night. I’m starting to feel really anxious about it. This past Sunday, I went to Central Park and grabbed some pizza, and on the way back, I felt so bad I decided to head straight to the urgent care clinic... The doctor listened to my lungs and said everything sounded normal. They checked my oxygen levels, which were fine, and then they brought up my lupus and lung health... I don't doubt them, since these issues actually started before my lupus diagnosis.

Years ago—back when this first started bothering me—I had a few allergy tests done (the kind where they prick your forearm), and it turns out I’m allergic to almost everything on the list except tobacco; things like dust mites, feathers, pollen, cotton, wool, and grass pollen... basically all the standard allergens. Back then, they gave me Histamine, and later Dihalar, which I took for about a year. After that, I had about ten years of peace. For the last couple of years, though, it has flared up once or twice a year. My chest X-ray is clear, and my iron and hemoglobin levels are totally normal.

Then, this past Sunday, I woke up at 3:00 AM feeling like I couldn't catch my breath and could barely inhale.
I don't have to tell you that the doctor looked at me like I was losing my mind... I just finished a spirometry test, and while the results should be ready this afternoon, the nurse told me right away that everything looks okay. The only thing is, I happened to blow into the machine right at the moment I was struggling to inhale. If she had called me in ten minutes earlier, it might have been different. Still, the results are technically fine, which is a relief.

One more thing: I constantly feel like there is mucus stuck in my lungs. I can feel this scratching sensation inside, but I can't cough it up, and it doesn't even trigger a real cough. I find myself clearing my throat constantly—just a little intentional hack because the sensation is so annoying—to move a tiny bit of that phlegm so I can swallow it. When I manage to clear it (though "coughing" isn't quite the right word; it's more like a clearing), my nose runs a little, and then I can finally breathe. But this has been going on nonstop since Sunday, and I am seriously on edge.
I haven't been diagnosed with asthma, but could this be an allergy flare-up? I have a friend with terrible asthma who told me the scariest part is when doctors can't hear any wheezing in your lungs; she said that happened to her too—where she’s wheezing and congested, but the doctors miss it entirely.
Though, I am currently on Medrol...

My GP prescribed a Flavamed syrup to help break up the mucus... I should mention that when my breathing gets difficult, Bisolvon has helped me in the past.

I had my chest and heart X-rays done yesterday, and they came back fine.

Eventually, things got bad enough that I headed to the emergency room at the Mayo Clinic:
Since I was already near the hospital after my spirometry, I waited for a friend near the medical center, and I started feeling awful. I decided to just go to the ER and ask what to do. The staff was very kind—the nurse at the desk even went to get a doctor immediately. She suggested I go to the Mayo Clinic first (since they are the specialists for pulmonary issues and are right next to the main hospital complex). There, they did another X-ray (even though I had one yesterday, they said you can never be too sure and their equipment is better) and ran blood work...
Anyway, regarding the spirometry, it says: "spirometry, parameters and flow-volume curve PEF slightly decreased, other findings normal." These are the values in percentages (A1/p):
VC MAX 109.2%
FVC 107.0 %
FEV 1 100.0.
FEV 1 % VC MAX 98.1
PEF 69.9
MEF 75 68.1
MEF 50 74.6
MEF 25 77.7
MMEF 75/25 73.7
I didn't write down the predicted vs. actual values because it would be a massive wall of text, and this is already plenty.
My blood gases are normal—at least that's what the pulmonologist told me (if Dr. H is reading this... pH 7.47, pCO2 32mmHs, pO2 93 mmHs, HCO3 23mmmol/L, tCO2 24mmol/L, ABE 1mmol/L, SBC 25mmol/L, SBE -0mmol/L, sO2 98%).

I'm just a little confused by one thing. The doctor said my PEF was fine, but on my report, I see that the PEF is listed as 69.9%.
While reading articles about Asthma and PEF, I noticed one value was lowered, suggesting my airways might be somewhat constricted and that therapy could be necessary.

Basically, my CRP is 1.1, but my white blood cell count is 14.7.

She prescribed me Rhinocort drops because I have an abnormal amount of mucus draining from my sinuses down my throat—it’s honestly gross.
She also suggested I visit the Pulmonary Clinic for interstitial lung pathology, just in case there's some Lupus lurking in the background. My X-ray came back fine. She mentioned the CT scan would provide more clarity, but she wants to be safe...

My gut feeling is that my lungs are filled with a pile of dried-up phlegm. Yesterday, I spent about an hour using my inhaler, and during that time, I could actually feel it melting, allowing me to cough up tiny bits while I breathed it in.
I’m really hoping this is just an allergy issue that will resolve itself. It’s a strange sensation when you experience something that makes doctors look at you curiously because it seems obscure or unusual to them, yet it clearly bothers you, and you're left searching for answers. I was thinking: if my throat and nose are dry, and my sinuses turn into a pile of concrete... why doesn't all that junk flow directly down into the lungs and bronchi? Since there's no defense in the upper airways, it all goes down, dries out, and becomes thick. Instead of whistling through the lungs, it just settles there and stays put because it's too dense to move. I know that sounds a bit like science fiction, but then again, every theory sounds like sci-fi at first.
So, the hypochondriac continues her quest... I'm waiting for my appointment at the clinic in February, meanwhile, I'm inhaling, sipping tea, taking Flavamed, and having sage honey...

Sorry for such a long and detailed post... I just haven't dealt with something lasting this long before. For the last 20 years, this used to happen once or twice a year and lasted maybe an hour or two. Now, it's been going on for a whole week.

I’m not entirely sure if I should be posting this here, but I thought I’d give it a shot:
Basically, I have a nearly full container of specialized medical nutrition sitting in my fridge. It’s approaching its expiration date, and since I don't need it anymore, I figured someone might be able to save some $33 and find it helpful...
It’s Maltodextrin (we bought it for my dad back when he was having trouble eating—I think you all know how that goes)
You can find some more information about it here

If anyone doesn't mind that it's been opened, it really isn't an issue—only a few spoonfuls have been used. It retails for about $40 at a local pharmacy, and I’d honestly be so happy to see someone put it to good use rather than letting it go to waste. It has a very neutral flavor (it’s almost like it has no taste at all), so it’s easy to mix into anything, whether sweet or savory...
Feel free to send me a private message so we can coordinate; I'm located in Washington, D.C., near the Mamut area.

Since I’ve been bugging you all quite a bit with my test results, I wanted to share an update: my new rheumatologist listed my diagnosis as either SLE or MCTD (which feels like a step forward compared to UCTD, don't you think?), and they prescribed Resochin (or Quensil, if I decide to pay out of pocket myself).
I’m also looking into those tests I mentioned over in the lupus thread.
Thanks for all the replies!

Hi everyone,
has anyone here ever dealt with sacroiliitis or whatever the medical term is?

vividsailor7 said:I’m not quite sure why they are trying to transition you away from metformin.🤷🤷
It looks like we’re seeing some very mild resistance here, but given how effectively you’ve responded to Metformin, I believe continuing with the current treatment plan is the right way to go.
A "normal" result is exactly what you want to see.

I tend to grumble a bit; I feel like I’m constantly fighting against my own endocrine system. Honestly, if everything is working exactly as it should, why on earth would anyone want to change a thing?

I have an appointment scheduled with my specialist at the local medical center in ten days. I haven't actually seen him yet, but ever since the leadership transitioned from public oversight to private management, it feels like the higher-ups have been giving me the runaround.
I happened to have a quick chat with my doctor earlier today. He suggested I come in for a follow-up because things were looking a bit unclear, so they decided to take me off the metformin for the time being.
It seems there is a misunderstanding regarding why I post. People assume my weight is the issue because I usually hover around 110 pounds, but that is simply my natural build—I've been at this weight for 25 years. Over the last few years, I've maintained it using Metformin; without it, my insulin spikes, my blood pressure climbs, and I end up gaining 10 pounds. Since most patients seen in a clinic are typically struggling with significant obesity, doctors often don't realize how much of a shock it is when I suddenly gain 10 pounds in just six weeks and feel like a tank. Once I started taking my prescribed medications, I managed to get back down to my baseline weight while keeping my diet and lifestyle exactly the same. As soon as I hit my target weight, my blood pressure dropped from 150/100 down to a healthy 115/75, and my doctor was able to take me off one of my medications.
I am never going to let them take me off metformin; I’ll fight tooth and nail to stay on it. Both of my uncles and my mother dealt with diabetes and eventually had to rely on insulin. Even though they weren't overweight and stayed active through sports and maintained healthy diets, they still ended up there. Because of that history, I am doing everything in my power to ensure I don't end up on insulin myself one day.
Alright, I'll stop pestering you now; I think you've all caught on to everything.

I was diagnosed with insulin resistance about ten years ago—it’s been a bit of a rollercoaster with everything from collagen disorders to neurology issues, among other things. I ended up gaining about 35 pounds in just two months and saw my blood pressure spike right along with it. Thanks to Metformin, I managed to get back down to my baseline weight (about 165cm and 110 lbs). However, once my endocrinologist—who actually switched from my old doctor to a private practice—decided to take me off the medication, the weight started creeping back on. It’s been a cycle: I gained 22 pounds, went back on Metformin to lose 11, got taken off again, and then gained another 11. It’s quite the performance.
I just checked in at the Mayo Clinic and picked up my latest lab results:
The extended OGTT:
The glucose readings look solid. We started at 5.3, then moved through 10.5, 9.6, 7.8, 4.5, 4.9, and finally 5.4—there's really no need to overthink those numbers.
The B-cell activity is sitting at 76.9%.
It looks like my peripheral insulin sensitivity is sitting right at 113.3%.
My insulin resistance index is sitting at 0.9.
My insulin was at 40.2 at the zero-minute mark (with a reference range of 21–174 pmol/L), and here is how it progressed:
At the 30-minute mark, the reading was 40.2, and then it continued to:
After 60 minutes, the reading came in at 266.2.
A 120-minute duration equates to 317.2.
A 180-minute duration works out to 32.7.
It took about four hours to get through that, which felt like a bit of a marathon. Still, I’m feeling pretty good about the progress!
The reading came in at 36.9 after about five hours. It’s like watching a slow-moving tide coming in.

It dipped down to 17 at the very end last time, but everything is looking good now.

My fasting C-peptide came back at 0.33 nmol/L (with a reference range of 0.27-1.27), and here is the rest of the data:
Thirty minutes elapsed, clocking in at 1.56.
Sixty minutes at a 1.60 pace.
A quick update: my reading came in at 1.07 after about two hours.
Just hit the 180-minute mark with a reading of 0.71. It feels like a steady, reliable pace.
- 240 0.48
It seems like we're looking at a reading of 0.37 after 300 minutes. It's helpful to think of these numbers like tracking progress during a long road trip—every little bit of data helps us map out the journey ahead.

Any thoughts on potential resistance?

My blood pressure is running high again. It seems to be a recurring pattern whenever I'm taken off Metformin; as soon as I put on about ten pounds, my numbers spike right back up to 150/100.

By the way, what does Type N mean on a lipid profile (Fredrickson)? Last time it was listed as Type U, but now it says Type N.

vividsailor7 said:My answer remains unchanged.

Perhaps it’s because some doctors aren't even familiar with generic names?

When my dad was dealing with neuropathy following an AAA surgery, his anesthesiologist first tried Tramadol and Lamel. When those didn't cut it, she switched him to Doretta and Arvind—which is essentially just the same combination of Tramadol, paracetamol, and lamotrigine again. Since they are all generics, the idea that the brand name is inherently superior to the generic version simply doesn't hold water.
The only logical conclusion is that the doctor isn't fully grasping the specific chemical makeup of what she's prescribing.

What specific criteria do our rheumatologists and immunologists actually use to diagnose an autoimmune disease?
I’ve been digging through Mendeley and browsing the American College of Rheumatology website...
It feels like I'm missing a key piece of the puzzle to reach a definitive diagnosis. It isn't as simple as just having swollen joints; that's certainly not the only indicator they look for.
The real struggle, though, is the timeline. By the time you finally sit down for that appointment with a specialist, the symptoms that were driving you crazy three or four months ago have often subsided.

Maria Fisher46 said:I’d just like to build on what my respected colleague—whom I’d like to acknowledge here—has shared regarding the options available to you. It is important to understand, Kimberly Martinez7, that a single lab result showing specific antibodies isn't enough to diagnose an autoimmune condition or a systemic connective tissue disease. You also have to meet specific clinical criteria established for each individual illness. This process usually requires a thorough medical history and a full physical exam, which falls under the expertise of an immunologist or rheumatologist. That is why my colleague suggested seeing one as your next step.

In short, a positive test alone doesn't guarantee a definitive diagnosis because other symptoms must align. I mention this so you aren't discouraged if an immunologist can't give you a final answer immediately after your visit. It's quite common for patients to "wait" for a certain period while they monitor whether all the diagnostic criteria are eventually met.

Wishing you all the best, Kimberly Martinez7.

Best regards. 🙂

I am still waiting for a final diagnosis from 1990.
Positive anti-ds-DNA, ANA, ENA, cardiolipin, histone; elevated CRP, low C3, albuminuria, rashes, mucosal sores, sicca syndrome (Schirmer test is 1), chills, night sweats (I'm changing clothes like I have the flu because my temperature drops and I get soaked... I'm going through mountains of laundry...), low-grade fevers around 99°F, neurological issues (altered EEG and VEP with neuronal lesions, hemiparesis), lymphadenopathy, a false positive TB test (and whatever else tends to trigger those?), antiphospholipid syndrome, and as mentioned in my other post—based on scintigraphy—it looks like sacroiliitis too, though nobody will document it except maybe a nephrologist.

So, yeah, I finally managed to book an appointment with a different rheumatologist... I got in on November 19th. They tell me rheumatology is never an emergency. But this involves immunology, too.
When I feel terrible, all I can do is stay in bed and rest as much as possible. And take some Advil.

I know immunology is complex, but is it really this complicated?!

My joints ache, I have enthesitis, and my joints feel like they're burning. They don't swell, but they burn, and the skin over them feels incredibly hot (while the rest of my skin feels normal), especially over my hips. Sometimes even my skin hurts; literally any touch on certain areas is painful—even the feeling of my clothes against my skin or touching my forearms (though my 2003 biopsy showed absolutely nothing unusual).

VEEP:
- Stimulating both eyes reveals a P100 wave with atypical morphology and low amplitude, characterized by W-shaped patterns with latencies at 100 and 140ms. This suggests a neuronal lesion in the visual pathway, potentially due to conduction interference or significant narrowing in the peripheral field.

- Stimulating the left eye shows a P100 wave with normal amplitude, though latencies are prolonged specifically within the upper field fibers. For the right eye, the P100 wave maintains normal amplitude but exhibits prolonged latencies. These findings point toward conduction issues in both visual pathways—much more pronounced on the right—alongside a neuronal lesion in the left visual pathway.

- Stimulating both eyes produces P100 waves with normal amplitudes, paired with a lower bilateral N135 wave. This could suggest (and honestly, isn't that a clever way to phrase it? 🙂 ) a neuronal lesion affecting the fibers in the peripheral field of both eyes.

Now the neurologist is saying there's demyelination occurring in the optic nerve area.

I know there’s a whole crowd out there convinced that everything boils down to Microsoft and their theories.

But here’s the thing: I don’t have MS, yet I’m still dealing with this whole VEEP situation. And sure, nobody can quite pin down why I have a mountain of neural lesions, conduction issues, and field constriction—which is why my fundus exam looks even paler now...

The reports always suggest some kind of neurological pathology, but they never actually specify which one. It’s like trying to find a needle in a haystack. To make matters worse, the summary in my discharge papers was written so poorly that my neurologist (who works at a hospital where they actually take the time to do a thorough puncture) actually laughed. He said they didn't even include the actual findings, just a tiny, useless snippet. The only standout was elevated prealbumin in the CSF. But it isn't multiple sclerosis. My Boeing test showed dysfunction in the statoacousticus area and its nuclei. While my SEC results were fine, I’m currently waiting on the new evoked responses.

Brenda Alvarez24 said:Thanks!
I am, though since my budget is pretty tight right now, paying out of pocket isn't really an option... They told me at Neuron (that's the one affiliated with the National Institute of Mental Health) that there is an 11-month wait. It would be sometime next year. However, I managed to snag an appointment at Quest Diagnostics in just two months. I also checked with my neurologist, and he advised against going to Holy Spirit because their MRI machine is outdated, and he needs high-quality imaging.

On a side note, I was reading up on the guidelines regarding the required strength for an MRI when diagnosing MS. It used to be recommended to use a 3T machine (like the one at Neuron), but they've moved away from that idea. It turns out the Tesla strength isn't the deciding factor as much as the software being used. For example, some 3T magnets actually have inferior software compared to a 1.5T machine, making a newer 1.5T model a better choice than an older 3T one. That said, the general recommendation is to ensure it is above 1.0T.

lonefalcon41 said:The most advanced scanner in the US (3T) is at the National Institute of Mental Health. I believe they take Medicare. It might be worth looking into.

Thanks!
I have; however, since my budget is pretty tight right now, paying out of pocket isn't really an option. They told me at Neuron (that's the one at the National Institute of Mental Health) that there is an 11-month waiting list. That would be next year. On the other hand, I managed to get an appointment at Quest Diagnostics in just two months. I also checked with my neurologist, and he advised against going to Holy Spirit because their MRI machine is quite outdated, and he needs high-quality imaging.

If you know someone battling metastatic prostate cancer, please let them know—as far as I know, and I can't speak for every hospital out there, though I know Vinogradska isn't part of this—that Rebro is participating in international clinical trials involving two of the latest drugs approved abroad (in the US and EU) for metastatic prostate cancer: abiraterone and cabazitaxel (brand names are Jevtana and Zytiga).
The oncology team at Rebro includes specialists from urological oncology like Dr. Bišćan and Dr. Grgić, and Dr. Solarić can also provide excellent guidance.
I truly hope this information helps someone out there.
There are specific criteria required to join a study, so it’s vital to contact an oncologist early enough to see if you qualify.
Information regarding which studies are being conducted at which hospitals should technically be available everywhere, but in reality, it often isn't. Doctors ought to share this, but they don't always. That’s why I’m sharing this now.
If anyone thinks I'm just advertising medications or pushing questionable experiments... please, a quick check will show that both abiraterone and cabazitaxel are already approved treatments; essentially, it's not like we are testing an unapproved drug!

I should clarify that neither abiraterone nor cabazitaxel is (yet) approved here in America. However, since they are approved overseas, I assume these aren't some "wild west" trials involving experimental drugs that haven't passed safety standards yet.
The fact that they aren't registered locally doesn't change much right now, mainly because they are so expensive that I doubt they'll be added to any insurance coverage lists anytime soon. Plus, prostate cancer isn't the kind of disease that makes front-page news; nobody organizes massive charity concerts to fund these specific drugs. It usually affects older patients, who unfortunately don't always get the same media spotlight or public sympathy.
Sorry if that sounds harsh, but it's just the reality of the situation.

I need to get an MRI for my lower spine. I originally scheduled it at Holy Spirit because the wait time was pretty short, but a friend of mine who works as a nurse just warned me that their scanner is an older, weaker model. Since this scan is really important for monitoring my demyelination, I’d much rather go somewhere else with a high-field magnet to ensure we get the highest quality images possible.
I've been doing some digging online, but honestly, I'm just more confused than when I started.
Does anyone have any advice?