Is it dermatomyositis?

Hi,

I have had joint pain since the birth of my first son (14 years ago) with no other symptoms until I had a major burnout in 2017 (I was 40yo at the time). I associated the new symptoms with stress (mainly hair loss, significant constipation, brain fog, and anxiety at the time), but over time, new ones have been appearing: muscle twitching (but EMG was normal), night sweats, a red flat rash on my neck (under earlobes where my jaw starts), poikiloderma on neck and chest (i see it clearly but my rheumatologist says there is no rash at all, but doesnt examine my skin either. However, a dermatologist confirmed it's there but said a biopsy was needed to establish cause). None of this was bothering me too much, until 2023 when I all of a sudden started experiencing chronic fatigue. This has really affected my entire life, as I cant work or do much with the family or help out with chores. Before the fatigue, I also experienced a few months of swallowing problems (I'd choke constantly when drinking, eating, or just from swallowing my own saliva). This went away though by itself.

I also developed new symptoms, like chest pain (ECG normal), and a sensation that i had difficulties breathing with/expanding my chest.

All my symptoms were dismissed as my blood work was all normal. With one exception - i showed positive for autoantibody Mi2-beta. I don't have the exact level, the results only showed as (++). My doctors said this was a testing mistake, but I don't think the method was immunoblot (which i understand more often give false positives). Since I don't have specific symptoms, I was told it cannot be DM. While relieved about this, I am still uncertain, as I worry that some symptoms that do somewhat align with DM (rashes, dysphagia etc) have not been examined fully when ruling this out. But this is not a conversation I've been able to have with my doctors as they don't see/look at my symptoms and therefore simply argue they are not there. My question is whether DM symptoms can be weak/unconventional, and therefore missed. For example, my neck was the only area exposed to the sun as I'm very diligent about covering up (and living in Australia at the time) - could this affect where the rash first appeared? I fully appreciate that this might be completely irrelevant, but I just want to understand what is relevant and not, and there is so little information about this.

In the past 6 months I have been under greater stress, and all of a sudden I started experiencing persistent itching on my knees and elbows, with very faint redness. My left elbow is the most affected, it started with a yellow rash, that then evolved into a red rash and some dryness, along with my knees and other elbow. Once I rested, much of it disappeared, but each time I started working again, they came back. I also had a very strong itch on my lower neck, with no rash at all. It seemed more neurological, I had to cut off all my t-shirt labels and it was aggravated when I showered. I further developed a rash on my upper eyelid, that is not very itchy, but more burning. These symptoms remain, but quite weak now that I've been off work for a while and was given a new medication (see below).

In June last year (before the new rash developed) i again tested positive for Mi2-beta, now at a lower level (+). This was dismissed as a mistake again, or as normal. However, none of my doctors discussed it in relation to my previous positive and higher result.

I am on plaquenil since April 2024 after begging my doctor to help me with my fatigue, as a previous doctor had prescribed it but it was during Covid and I was worried about taking a DMARD at the time so I never took it. But once I started, it immediately helped with my hair loss, fatigue, night sweats, thrush and brain fog, but it didn't last when my stress increased due to work.

My current rheumatologist is good, but he also hasn't really examined my rashes, and thinks it's more likely that I have psoriatic arthritis. Due to my inability to work because of my fatigue he prescribed MTX. I haven't been taking it for more than 5 weeks, and a bit inconsistently due to the holidays, but it seems to help with my fatigue and brain fog, and I managed to finish my work thanks to it. But the itching is still there but a lot less. However, the past 2 weeks I've had some swallowing issues again, but while I've choked a bit, I mostly feel like I have to be very vigilant and I manage to control my swallowing before I choke.

I'm not seeing my doctor until March and will ask him these things again and maybe insist on seeing a dermatologist specialised in dermatomyositis. But in the meantime I'd be grateful for any comments or ideas about how I should think about all this.

Apart from Mi2-beta, I have been aneamic since 2022 (consistently not very much). I take iron supplements, but they don't change my values. My 2 most recent blood tests also showed low leukocytes, high light free chain lambda, and my ACR is high. But that's it. No other issues.

I also wonder if my knowledge of the Mi2-beta results can cause psychosomatic effects, so that my increased stress in the past 6 months simply manifested in ways that align with my 'expectations', leading to the new rashes?

I am so confused about all this, but it is debilitating and I just want to get back to normal, or at least get some answers.