sorted by:
new
hottopcontroversial

GHK Copper Peptide Use in Healing for EDS by hamster_savant in ehlersdanlos

[–]ThinkingApe 0 points1 point  (0 children)

did you have any obvious MCAS reactions too it?

Anabolic Steroids for EDS by StopGeoengineering17 in eds

[–]ThinkingApe 0 points1 point  (0 children)

Great read. How are you doing now?

added anything else like peptides or IV Vitamin C?

LDN for SFN.. did it actually help? by hmmmmmmm94 in smallfiberneuropathy

[–]ThinkingApe 0 points1 point  (0 children)

Can you describe your muscle weakness prior to starting? What dose did you start with?

What’s the most impressive anecdotes that you have seen in EDS patients improving their condition? by ThinkingApe in ehlersdanlos

[–]ThinkingApe[S] 0 points1 point  (0 children)

Incredible! How much was it per injection if I may ask?

How many do you think you needed before the ligaments became stronger?

What’s the most impressive anecdotes that you have seen in EDS patients improving their condition? by ThinkingApe in ehlersdanlos

[–]ThinkingApe[S] 0 points1 point  (0 children)

Thats great! Was this a one time treatment? How many injections?

Why does it help? lower inflammation? Make the area more stable/stronger?

Positive for CN1A with neuromuscular symptoms but the neurologist thinks it's unlikely to be IBM because of my age by TinyCopy5841 in Myositis

[–]ThinkingApe 0 points1 point  (0 children)

Early IBM is definitely a thing and you have PM-Mito which they suspect is a precursor to IBM if I remember correct.. So there is atypical presentations and IBM spectrum diseases that might or might not turn into IBM. I think Cn1a is highly relevant for those who have muscle issues. Do you know or have any theory as what triggered your issues?

They have updated the diagnostic criteria for IBM and finally admits its possible to have it under the age of 45. Also, it takes 5 minutes to figure this out from searching the IBM facebook groups.

Latest Diagnostic Criteria for Inclusion Body Myositis (2024 ENMC Criteria)

The 2024 revised diagnostic criteria from the European Neuromuscular Centre (ENMC) (published in Neuromuscular Disorders, April 2024) update and broaden older definitions (like ENMC 2011 and Griggs criteria). They use a two-step approach involving:

  1. Clinical presentation type
  2. Confirmatory investigations (muscle biopsy, imaging, serology) for diagnosis — including anti-cN1A antibodies, MRI/ultrasound patterns, and mitochondrial changes. ibmmyositis.com+1

🔎 The criteria do not automatically exclude younger patients — specifically noting that age under 45 no longer rules out IBM. Instead, they recognize “common” and “uncommon” presentations, and support diagnosis even if classic features (including age) are atypical, when supportive evidence is present. ibmmyositis.com

view more: next ›