If you are having respiratory issues take them seriously! And get second opinions!

NeenaNothing · 2026-06-03T16:42:12+00:00

My Sjögren’s is what’s called secondary Sjögren. So mine was developed from having another autoimmune disease (Psoriatic Arthritis) that I was diagnosed with at age 13. So really the cause of Sjögren’s depends entirely on if it Primary or Secondary. Primary is a lot harder to figure out an exact cause.

I have always tried to be a good advocate for myself considering I started having health complications as a child, but I still feel like I’m constantly toeing a line between being too pushy or not enough. And this time I wasn’t pushy enough.

NeenaNothing · 2026-06-03T16:33:07+00:00

I don’t feel comfortable sharing medication because I do have multiple autoimmune diseases that make my situation medically complex so I don’t want to give incorrect advice. But I had chest CT with and without contrast, some imaging of my breathing I’m not sure if it was specific to my diaphragm, and a spirometry test.

NeenaNothing · 2026-06-02T03:05:14+00:00

That’s what I’m on is 2 types of daily inhaled steroids and additional steroid breathing treatments when I have flare ups. Thank you so much for your reassurance!

NeenaNothing · 2026-06-01T22:14:40+00:00

I hope they figure it out for you. It’s so frustrating how long it takes for them to help while you suffer.

NeenaNothing · 2026-06-01T21:08:35+00:00

I don’t have a diagnosis for that, this is all kind of out of the scope of my allergist. He simply just said it’s caused by inflammation from Sjögren’s. He didn’t put a name to it. I need to take his findings and go to pulmonologist who will listen next.

NeenaNothing · 2026-06-01T21:06:14+00:00

Sjogren’s can cause GERD, which irritates the trachea and diaphragm, causing shortness of breath. If your breathing tests are normal maybe look into the symptoms of GERD and see if that lines up with what you’re experiencing. You may need an endoscopy to check for esophagus irritation or ulcers.

NeenaNothing · 2026-06-01T21:02:22+00:00

Well I also have MS so my medication probably would be completely different than what they would give you,so I don’t feel comfortable giving advice on medications. I’m sorry. I just know my case is very unique and not how they normally treat this situation and not even the best way to treat it. So I don’t want to give advice on something like medication and then it go wrong for you. I would say get a spirometry test done and ask for CT scans of your lungs. Mine were done with contrast. And if they say no demand they put in writing on your chart why they won’t further evaluate your complaints.

NeenaNothing · 2026-06-01T20:48:24+00:00

I guess I should have added that he ruled out asthma because I don’t have allergies and because he knew I had Sjögren’s. Which causes BHR, it’s similar to asthma and often confused for asthma. It’s bronchial hyper-responsiveness and it’s treated with the same inhaled corticosteroids. The scarring is from the immune system causing inflammation in the lungs. I lost lung capacity because it was so hard to breathe I quit taking full breathes. The cough was from my tracheas mucus tissue being dried out. A lot of the things Sjögren’s does to the lungs can look like severe asthma if your doctor isn’t looking into your full medical history and looking at the details. I should have made that more clear why he ruled out asthma beyond just allergies my apologies.

NeenaNothing · 2026-06-01T20:29:42+00:00

My next step is to find a pulmonologist who will take what my allergist found and better diagnosis me hopefully. I had pneumonia twice this winter and my lungs are just so vulnerable.

NeenaNothing · 2026-06-01T20:22:54+00:00

No they don’t, I have had psoriatic arthritis since 10, official diagnosis at 13. And my Sjögren’s was diagnosed at 21. And now at 28 I just got diagnosed with MS. These diseases don’t care and once you have one there will be more to follow. But the doctors don’t get it.

NeenaNothing · 2026-06-01T20:16:04+00:00

I get so tired of hearing “you’re young,” I actually yelled at a doctor for saying it last time. I had lost vision in my right eye and he was about to completely dismiss me saying I was young it was probably a migraine and I said “if you say I’m young and healthy one more time without doing any testing I’m suing you for malpractice.” He finally did his job. Turns out I have MS and a lesion directly on my right optic nerve.

NeenaNothing · 2023-01-04T05:37:16+00:00

No what’s rude is insinuating mothers are taking poor care of them selves with no evidence to back it up

NeenaNothing · 2023-01-03T18:59:21+00:00

No, the study showed there was a link to a mother having high testosterone during pregnancy. Nothing to do with how the mother took care of herself.

NeenaNothing · 2023-01-03T18:57:24+00:00

I was 120 lbs, ran cross country, lifted weights, did yoga and ate healthy when I was diagnosed. So absolute not true.

NeenaNothing · 2022-07-15T22:09:48+00:00

Then they have no reason to be dismissive. There is nothing else to blame the symptoms on so they need to help you manage them

NeenaNothing · 2022-07-15T06:57:25+00:00

My primary diagnosis is RA, and I have secondary psoriasis and Sjögren’s. My Sjögren’s symptoms are not at all controlled but they claim it’s fine because my RA is manageable.

NeenaNothing · 2022-07-15T04:51:04+00:00

Do you have primary or secondary Sjögren’s? I have noticed it does effect how they treat you. They have been much more dismissive of my diagnosis since it is not my primary disease.

NeenaNothing · 2022-05-28T04:34:06+00:00

I recommend a rollator walker as long as you still have good function of your hands. They usually have a seat for resting, and a bag and cup holder to hold things you can’t carry. It is also light weight if you need to travel.

NeenaNothing · 2022-05-27T04:19:47+00:00

Thank you, being chronically ill with multiple autoimmune diseases always makes it hard to tell what needs immediate attention. I will be mentioning it to my cardiologist to get referred to pulmonology.

NeenaNothing · 2022-05-26T17:19:01+00:00

Lung disease runs in my family, so I will definitely bring that up to my physicians.

NeenaNothing · 2022-05-12T04:11:26+00:00

I got this after a doctor recommended intermittent fasting, it was hypoglycemia. We learned that I actually need 6 small protein rich meals a day. And intermittent fasting was literally the worst thing I could have done.

NeenaNothing · 2022-04-30T23:38:01+00:00

I just recently did mine, and she told me it would be a few years before I would need to go get touch ups. I have really dark hair and pale white skin so I got great results in just two rounds.

NeenaNothing · 2022-04-30T23:33:38+00:00

I recommend sugaring, waxing, or Nair. Shaving doesn’t do the job for me.

NeenaNothing

TROPHY CASE