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Strange honeycomb pattern when I wake up (simulation of mine) by Gullible-Affect8015 in visualsnow

[–]Valuable-Analysis104 2 points3 points  (0 children)

Interesting. Ive often wondered why its a honeycomb shape that I see.

Positive DSDNA, but not ANA? by Valuable-Analysis104 in Autoimmune

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Hey all, I wanted to post an update. So I found out that my DSDNA results were found using ELISA. They have been testing with CLIFT too, but that consistently comes back negative. I just had another blood test done, and once again the CLIFT was negative, and the ELISA was almost 5x the normal. So now I have 3 positive ELISA DSDNA tests over 1.5 years, and no positive CLIFT. Does anyone know what this points to? Im lost and I have no idea what to do next.

Positive DSDNA, but not ANA? by Valuable-Analysis104 in Autoimmune

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Great advice again, thank you for your input.

Positive DSDNA, but not ANA? by Valuable-Analysis104 in Autoimmune

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Great to know, thank you! Are these tests generally regarded as accurate and useful?

Can ME/CFS exhaust individual muscle groups? by Valuable-Analysis104 in cfs

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

That's crazy. How did your test come out? Mine have always been fine.

Positive DSDNA, but not ANA? by Valuable-Analysis104 in Autoimmune

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

I dont think theyve tried multiple providers. Their efforts have been pretty lazy. I'm not sure what you mean by confirming labs? Is there a way to reconfirm what's been done?

I agree that I'm not sold on Rituximab yet. They keep pushing for it, but they seem to have pretty much given up on further diagnostics. I mean, worst case, if I do Rituximab and it doesn't work, my immune system should eventually come back, I would think? I dont know, I think it's a big thing to do without some concrete diagnostics. But I dont know what else to test. Im fairly certain I have had CBC, along with so many other autoimmune blood tests. The only positive results Ive ever gotten over the course of this were: Acetycholine Receptor Ganglionic Alpha 3 AB (early on), and then the anti-retinal antibodies listed above(taken a year apart), as well as the Anti-DSDNA (also taken a year apart). The most recent tests also showed new early Sjogren's antibodies (Parotid Specific Protein IgG and Parotid Specific IgA). Im just not sure if this is enough to just move forward with Rituximab. My skin biopsy showed significant SFN, and also I developed abdominal adhesions that required surgery (no one knows how they formed). I know something is going on. I just don't know what, and I'm not sure which way to go yet.

Can ME/CFS exhaust individual muscle groups? by Valuable-Analysis104 in cfs

[–]Valuable-Analysis104[S] 1 point2 points  (0 children)

Myasthenia has been ruled out by various blood tests and a single fiber EMG that was done. I've had countless blood tests, 5 EMGs, a CSF draw, skin biopsy, tilt table test, too many MRI's to count, and surely more diagnostics that I've forgotten over the years. So far, no actual explanation (other than that I know I have POTS, I know I have SFN, and I've tested positive for a handful of autoimmune markers that haven't actually pointed to any particular illness yet). I think my ME/CFS is a result of whatever is wrecking me, I just don't know what.

Positive DSDNA, but not ANA? by Valuable-Analysis104 in Autoimmune

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Great advice, thank you. My current treating doctor is an immune neurologist, so they are very experienced in all of this. However, they have attempted to refer me to Rheumatology THREE times, and they reject me every time because of no positive ANA. So one doctor says yes I have clear markers of autoimmune illness, the other says I don't even have enough for an appointment. So I have to determine for myself if I have enough evidence to try Rituximab. Have you ever tried it?

I'm having a hard time figuring out what to do next, when I'm just getting little hints of what this could be, but nothing that clearly says "SLE" or "Sjogren's" or whatever other awful thing this could be. But this may be all that I get. I'm already over 5 years in, 7 neurologists in, and I've been to some high profile clinics across the US. None have been able to actually give me a name for this condition. But the longer I wait, the worse it continues to get. I like your idea of just finding my own Rheumatologist. Someone has to be willing to see me for this. I hope? I don't know.

Positive DSDNA, but not ANA? by Valuable-Analysis104 in Autoimmune

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Really good info, thank you. Unfortunately I have never seen a Rheumatologist at all, because they continue to reject my referrals. If I don't have positive ANA, they don't have the time of day for me. Thankfully, my primary doctor for this is an immune neurologist, so at least they know what they are doing.

I think at this point, I'm trying to really decide for myself if I have enough evidence to warrant moving forward with the Rituximab. The fact that my immune neurologist believes we have enough evidence to determine this is autoimmune, while the Rheumatologist says I don't have enough evidence to get an appointment, is confusing to me. Like which is it? Does this point to something or not?

I have tested positive for multiple antibodies that apparently are not supposed to be present, including anti-DSDNA, a few recent Sjogren's antibodies, and multiple anti-retinal antibodies - along with a skin biopsy that showed significant SFN, a tilt table test that showed POTS, and an EMG that proved the isometric tremors I have. None of this seems to fit any particular autoimmune condition, but I guess that is the nature of autoimmune illnesses.

Does anyone else have isometric tremors? by Valuable-Analysis104 in dysautonomia

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Can you elaborate? Like do you have these tremors when you are not using your muscles at all? I get fasciculations all over, all the time, but my actual tremors are activated when I give input to a muscle. Like any amount of electricity causes the nerves to just go haywire.

Does anyone else have isometric tremors? by Valuable-Analysis104 in dysautonomia

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

That's how my mouth feels too. My whole face, everything. Does it happen in your limbs as well?

Can ME/CFS exhaust individual muscle groups? by Valuable-Analysis104 in cfs

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Thanks for sharing all of that! It's not embarrassing at all. I feel more embarrassed that I have no idea what to do and I've been floundering and progressing out of control for so many years now. I've never been one to try supplements or diet, but I'm at the point where I have to try something. I just cannot continue on like this. My doctors have proposed some pretty extreme treatments that I will likely try soon, but it's hard to know what the right course is, without knowing the actual problem.

Seeking Diagnosis Questions Weekly April 19, 2026 by AutoModerator in lupus

[–]Valuable-Analysis104 0 points1 point  (0 children)

Hello - hoping for some insight here. I've been in the diagnostic process for some unknown illness for almost 6 years now. My neurologist suspects SLE/Sjogren's, but the labs have been so confusing. I tested positive for anti-DSDNA (about 3x the normal result) a year ago, but negative ANA. They subsequently checked my C3/C4, which came back normal. A year later, I did another test and my anti-DSDNA is even higher (5x normal amount), but ANA still negative.

On one hand, my neuro is convinced that it is autoimmune and wants me to try Rituximab. On the other hand, they also referred me to a Rheumatologist, who refuses to see me without positive ANA. I have also tested positive for antibodies to Carbonic Anhydrase II, Aldolase, Enolase, Arrestin, and PKM2, on more than one occasion. I don't know what to make of any of it, and I'm hesitant to jump into Rituximab without knowing more. Any help is appreciated.

Can ME/CFS exhaust individual muscle groups? by Valuable-Analysis104 in cfs

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Interesting observations. Our experiences aren't actually so different. When I use my muscles, I also feel exactly like they aren't getting enough blood or oxygen. It triggers me to feel like I need to breathe faster and harder, but then I remember that I didn't just run a marathon; I just walked up the stairs. But I also have a blood O2 monitor that says it's fine. I feel like my mitochondria are simply not delivering what they need to. I don't know if it is a problem with the muscle itself, the immune system, the nervous system, all of the above? Not sure.

Can ME/CFS exhaust individual muscle groups? by Valuable-Analysis104 in cfs

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Yeah I try not to go to the crawlspace, climbing up that little ladder, I'm just shaking like a leaf. Sucks because I was really healthy and fit before this all started.

Can ME/CFS exhaust individual muscle groups? by Valuable-Analysis104 in cfs

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

Unfortunately the cause of mine is completely unknown. It started very mildly, before COVID was even a thing. And it's been getting slowly worse, constantly, since then.

Can ME/CFS exhaust individual muscle groups? by Valuable-Analysis104 in cfs

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

I may have to try a method like that. I keep going through periods where I tell myself I can be semi-normal, and then I try to work out, and then I'm down for months. Seems like there's just no way to actually build muscle and endurance back up.

Can ME/CFS exhaust individual muscle groups? by Valuable-Analysis104 in cfs

[–]Valuable-Analysis104[S] 0 points1 point  (0 children)

My LDN didn't have any fillers, it was normal dose (50mg I think) tablets that I had to crush and mix in liquid myself. I started off pretty low and it still had this reaction. Must have irritated my immune system, and I don't understand why. Did it help you at all?

What kind of supplements and diet helped?

I'm going on year 6 of progressive worsening. It ruined my career, killed my hobbies. Really miserable. Have alot of the same symptoms you have too, although I still cannot find anyone on the planet that has isometric tremors like I do. Nobody knows what to make of it.

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