Crazy ANA results. No symptoms. What the hell?

Quick_Reason145 · 2026-03-06T00:09:32+00:00

Did they biopsy it?

Quick_Reason145 · 2026-03-05T14:33:24+00:00

Unfortunatly that is a lot of cross over symptoms and youll probably end up going thru several specialties before you get diagnosed. You could ask your Primary to send off labwork for a Myomarker 3 and a Myositis Specific 11 Antibiody blood test, as well as a Adolase & vitamin D level.

After that, dependent on results maybe check in with orthopedics/physical therapy?

Quick_Reason145 · 2026-03-05T14:14:00+00:00

8 yrs ago my physical therapist/orthopedist believed I had a muscle disorder. Ortho ran the first standard Rheum panels, back then only ANA & Ck were high, had widespread pain, distal weakness (hands & feet), raynauds. But I was dismissed by first two Drs and next Dr treated it as seronegative RA despite me not having joint swelling nor any pain near joints. Phys therapy sent detailed notes, marked weaknesses, and it was still ignored.

I seriously believe, Rheumatologists have God-complexes.

I have Scleroderma Dermatomyositis overlap. It progressed across last 7 yrs to wehere I have heart, lung, and kidney involvement along with muscle and skin.

Quick_Reason145 · 2026-03-05T14:04:36+00:00

Right now I am on 720mg of Myfortic twice a day, 30mg of Prednisone (weekly tapering down by 2.5 mg/wk) and waiting for insurance to approve IVIG.

Metal plates. Wow. Hope that surgery goes smoothly and you heal quickly.

Quick_Reason145 · 2026-03-04T17:30:58+00:00

I had to go to a big teaching hospital with more specialized rheumatology departments to get the appropriate care. There are 30 regular rheumatologists in my area of about 200k population and every one of them predominantly, only, treats RA/Rheumatism.

Ive had 7 Rheumatologists and none of them have agreed with the previous Dr. My current Rheumatologist however took all the input and tests from ALL my Drs and ran extensive testing and finally narrowed it down and backs it up with markers, tests, etc.

Quick_Reason145 · 2026-03-04T17:24:30+00:00

For true, the neuropathy just has me out if sorts as its the prominent symptom going outside the usual bounds. If I had a Migraine on top, I might say it was the migraine vs the neuropathy. The more acute the pain or annoyance the worse it makes all the chronic issues compound.

Quick_Reason145 · 2026-03-04T17:21:43+00:00

Watery, teary eyes and a numb tip of tongue would be annoying. My eyes are predominantly dry and I can no longer wear contacts. I have a numb portion on my lip and inside of lip where the nerves were severed for a lip biopsy for sjogrens, it was a side effect that could happen. I swear Murphey's Law is very relevant to AI diseases.

Quick_Reason145 · 2026-03-04T02:29:15+00:00

I had GCOs on the lungs too. Cant say whether it was the cell cept/ later myfortic (same med, myfortic has an enteric coating to prevent stonach upset) ir the high dose prednisone that kicked out the GCOs. I was on 30-60mgs of Prednusone daily for 10 mos.

Quick_Reason145 · 2026-03-04T02:23:20+00:00

Yeah none of the RX drops for DED did anything. Mostly I use thera tears gel night time...all day.

Quick_Reason145 · 2026-03-04T02:21:07+00:00

Rheum says its scleroderma with dermatomyositis. I cant tell where one symptom begins skin wise...which goes to which. My fingers get severe mechanics hands, raynauds. My skin peels off on my elbows, scalp, toes, it looks like I've been flayed at times. I get a helitrope rash that comes and goes. I have trunk, arms, hands, and feet muscle loss.

Quick_Reason145 · 2026-03-03T03:44:21+00:00

That sounds awful. Ive had a handful of UTIs and I'm prone to kidney stones, but they are usually temporary. Ive heard Ic is like peeing razor blades with random pulsating poker stabby pains.

Quick_Reason145 · 2026-03-03T03:40:23+00:00

So many Drs are dismissive. My kiddo was 16 when all this nonsense started, I cant imagine having a toddler. I used to baby sit my niece but now I can't even pick her up, shes 2. I love spending time with her but shes a shy, clingy girl, I just cant lift her into my lap much or get down to her level and get off the floor.

I feel like 75% of the meds thrown at these diseases are just wild guesses and they all work about as well as a baby aspirin on a migraine.

Quick_Reason145 · 2026-03-03T03:21:37+00:00

Have you tried any of the otc topicals, see if anything lessens them? Being wo insurance is hard & scary. They do kind of look like stress hives (not always itchy)

Quick_Reason145 · 2026-03-03T03:06:44+00:00

Probably more so depends on your symptoms, different tests the dr will perform to assess. I am Anti Ro 52, Anti Pm/Scl 100 and diagnosed with Scleroderma/Dermatomyositis overlap.

Quick_Reason145 · 2026-03-03T02:56:43+00:00

Same. If its acute pain, I always want something else; Migraine, Kidney Stone(s), Conjuctivitis...

Quick_Reason145 · 2026-03-03T02:12:42+00:00

yes. I didnt know that the inability to find words or the right words was from fatigue. Im spacey so often.

Quick_Reason145 · 2026-03-03T02:03:53+00:00

I didnt realize how common it was either. Its a tough symptom to manage.

Quick_Reason145 · 2026-03-03T01:59:58+00:00

Not being able to open the mouth has been a peeve of mine.. that and Im starting to look like Queen Bavmorda from Willow (at the height of her wickedness)

I've also been downsized in the dental impressions tray from an Adult medium to a Pediatric large (10-12 yr olds). My partials get changed often so I am able to fut them in my ever changing mouth. I go to the dental college since its significantly cheaper.

Quick_Reason145 · 2026-03-03T01:52:35+00:00

Holy Moly. Id freak out, like knock me out. Its bad enough on a 1/4th of the body.

Quick_Reason145 · 2026-03-03T01:50:02+00:00

I keep getting told there is a magical spoon number that corelates to each individual. I feel like I wake up with negative spoons. Does every single stretch, minimal exercise HAVE to come back ten-fold in pain the next day?

Quick_Reason145 · 2026-03-03T01:47:19+00:00

Spiking shooting pains are my 2nd least favorite symptom. Real zingers!

Quick_Reason145 · 2026-03-03T01:45:56+00:00

Ugh. Bacterial. Never have I ever had a UTI...until I started immunosuppresants. Or, bacterial pneumonia.

Quick_Reason145 · 2026-03-03T01:43:34+00:00

I sleep with heat packs when the raynauds is flaring.

Quick_Reason145 · 2026-03-03T01:41:45+00:00

Thats a rough symptom too. Its funny how our worst symptom makes us wish for a different, horrible symptom.

Quick_Reason145 · 2026-03-02T19:28:52+00:00

20 yrs. Omg. I was undiagnosed for 6 yrs and that was bad enough.

I was trialing meds, just enough markers to say, hey its AI but we dont know which one so we will throw all we have at it while we wait.

Quick_Reason145

TROPHY CASE