It's been almost 2 years since my husband has had an episode thanks to ivig every 4 weeks.
He had episodes probably for about 5 years before we understood what was happening and went to the emergency room with his last most severe episode. His swelling was significant but didn't require surgery.
In the past few months he's been suffering with very painful muscles in his buttocks and back of thighs. An orthopedic specialist ruled out an underlying nerve involvement. It seems it's just his muscles.
I understand that his muscles and nerves may have been damaged by the past episodes, but not sure why this pain has come on more recently rather than right after his hospitalization.
Wondering if others with SCLS have experienced this type of pain, and if so what you're doing to treat it.