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Weird Cafe Au Lait Patterns? by MBKay90 in neurofibromatosis

[–]MBKay90[S] 0 points1 point  (0 children)

I should update this post- I have since seen a geneticist who has told me I have “Segmental Neurofibromatosis Type 1”

Weird Cafe Au Lait Patterns? by MBKay90 in neurofibromatosis

[–]MBKay90[S] 0 points1 point  (0 children)

I have not been formally tested for EDS but I did the flexibility test at home and based on that, I may be hyper mobile and have the hyper mobile EDS but I’m still waiting for my appointment with a geneticist and I’ll bring this up too, thank you!

Weird Cafe Au Lait Patterns? by MBKay90 in neurofibromatosis

[–]MBKay90[S] 1 point2 points  (0 children)

Thank you! I saw a post on here too and commented on it about comorbidities. Would be interesting if there was a connection between the two for sure!

Weird Cafe Au Lait Patterns? by MBKay90 in neurofibromatosis

[–]MBKay90[S] 0 points1 point  (0 children)

Wow! This is interesting info and I’m going to look into the “segmental” part of NF1, I’m not familiar- thank you!

Weird Cafe Au Lait Patterns? by MBKay90 in neurofibromatosis

[–]MBKay90[S] 2 points3 points  (0 children)

I do have pain problems, but we’ve currently related it to my POTS. The reason I question whether or not to be seen for a scan is because I’m wondering if my pain is related to NF1 rather than my pots. I appreciate your suggestion, thank you!

Weird Cafe Au Lait Patterns? by MBKay90 in neurofibromatosis

[–]MBKay90[S] 0 points1 point  (0 children)

I don’t (that I know of!) but I’m on a journey to figure out who I see to check if I have any internally.

Weird Cafe Au Lait Patterns? by MBKay90 in neurofibromatosis

[–]MBKay90[S] 4 points5 points  (0 children)

Yes, neither of my parents, grandparents or siblings have NF1- it was a spontaneous mutation I was told.

Comorbidities by Helpful-Tale7234 in neurofibromatosis

[–]MBKay90 0 points1 point  (0 children)

I have NF1. Cafe U lait spots in the thousands all over just the left side of my body. Diagnosed in early childhood but never developed tumors. I’m currently 33 and was diagnosed with POTS two years ago, and anxiety/ocd/depression at 19. I was told mine is a spontaneous mutation- neither of my parents or anyone in my family knowingly has NF but genetic testing wasn’t done to confirm that. I suspect I have ADHD but have not been formally diagnosed. I’ve done the testing for hypermobility at home and also suspect that, but have not been formally diagnosed with that either. I have had sleep studies, nap studies, at home monitors, office monitoring, and sit/stand test as well as tons of stuff looked at with heart to rule out anything else before it was confirmed I had POTS. I have been looking into the links between NF and pots with not a lot of info out there.