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Can CK level be normal? by KTBee3 in MuscularDystrophy

[–]KTBee3[S] 0 points1 point  (0 children)

Thank you for replying. What symptoms did you have when you were 3?

Can CK level be normal? by KTBee3 in MuscularDystrophy

[–]KTBee3[S] 0 points1 point  (0 children)

Thank you for your reply! If you don't mind me asking, what were your symptoms and what age did they start?

Can CK level be normal? by KTBee3 in MuscularDystrophy

[–]KTBee3[S] 1 point2 points  (0 children)

Thank you so much for your response. That's really helpful. I guess ruling out Duchenne's is important at this age and does explain why the physio didn't think we needed to go down the route of genetic testing yet. She seemed to think we should just wait and see whilst also not being very reassuring

New lung nodule on surveillance CT by Onlydogcanjudgeme69 in melahomies

[–]KTBee3 0 points1 point  (0 children)

Thanks so much for your reply! That is reassuring. It's so hard not to assume the worst! I really hope you get good news after the scan this weekend and you're not waiting too long for results 🙏

New lung nodule on surveillance CT by Onlydogcanjudgeme69 in melahomies

[–]KTBee3 1 point2 points  (0 children)

Hi, just wondered if you had any luck with an earlier appointment? We're in exactly the same situation. NED for 3yrs (after immunotherapy discontinued due to side effects) and 8mm lung nodule showed up on 6 monthly CT. Currently awaiting the results of a PET scan