
appreciated the opportunity to see Professor Chinoy and I recognise his substantial expertise in rheumatology and inflammatory muscle conditions. He was polite, clear, and reassuring in his manner. However, I left the appointment feeling that some key parts of my longitudinal history were not fully integrated into the assessment.
Despite having uploaded all my scans from 2021, 2022, and September 2025, these were not able to be reviewed together during the consultation because the files were not opened on the system. This meant we were unable to discuss the progression pattern across the years — including the shift from right-sided abnormalities (fatty infiltration in 2021, right psoas sheath oedema in 2022, and right paraspinal inflammation in May 2025) to the newly emergent left-sided oedema in September 2025. This remains one of my main concerns, and I had hoped to go through it as a connected clinical story.
I also felt somewhat discouraged when the peer-reviewed publications I mentioned — particularly the Brain journal review “Axial Myopathy: an overlooked feature of muscle diseases” — were dismissed as unhelpful for patients to read. I fully understand the concern about online searches, but the review is a major academic paper describing:
• axial myopathy being frequently misattributed to spinal degeneration,
• seronegative inflammatory myopathies,
• cases where paraspinal involvement is the earliest or only manifestation, and
• the consistent issue that MRI abnormalities in the paraspinal muscles are under-recognised by non-neuromuscular specialists.
These points felt directly relevant to my pattern of findings, particularly as my bloods have remained seronegative and several consultants have attributed the MRI abnormalities mainly to spinal wear-and-tear — something the paper specifically warns can lead to under-diagnosis.
I appreciate that Professor Chinoy believes the fatty infiltration and oedema are most likely secondary to spinal changes. However, this does not fully account for:
• the right-to-left progression seen on imaging,
• the severe nocturnal pain and inability to turn in bed,
• the sudden onset bilateral hand pain, stiffness and locking,
• the persistence of symptoms despite minimal radiological change in the spine over four years, and
• the coexistence of Hashimoto’s disease, which rheumatology felt was irrelevant despite autoimmune diseases sometimes clustering.
I am grateful that he has arranged for radiology to re-review the entire MRI set, and I appreciate this very much. However, the consultation left me feeling that many parts of my history and symptoms remain unexplained, and that the published evidence on axial/paraspinal muscle disease — especially in seronegative patients — was not fully considered.
Seen for:
Autoimmune Diseases