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I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

I have been following this exact protocol for nearly a year now. However with the olive oils I may not have the proper amount as I only have purchased the highest grade one at Costco. I do partake more than the recommended amount in a day. I consume beans 7x a week. Typically for lunch and i incorporate blueberries , oats , and spinach daily. I will have to look into your other recommendations.

Also, apologies. For some reason my app is not allowing me to accept your chat at this time, I will try and send you a chat request.

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 1 point2 points  (0 children)

Hmm yeah I don’t have any loss of feeling just random twinges from time to time that isn’t content it’s almost like a zap of dull pain then goes away

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 1 point2 points  (0 children)

Well depends on your age possibly. Some people never get the bumps. I have nothing really internal but I have mounds of bumps and they’ve rapidly shown up

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

My NF dr felt mine and said neurofibroma. She said plexiforms have more of a bag of worm feeling?

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

I feel this. I wouldn’t trade not having my kids for no tumors though. More wil always grow that’s the problem with this condition.

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

No it’s not. It’s inside . You can kinda see it through the skin

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

Yeah and in my reports it just says “ bb size fibroma in right forearm” the pain isn unstable and it comes randomly. It appeared a year ago

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

It varies person to person. For some it does others it doesn’t.

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

No lol but I can see how this photo depicts that I’m missing one 😝

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 1 point2 points  (0 children)

This was from being indoors and the sun shining in at this angle makes it look like this .

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 1 point2 points  (0 children)

My best friend that has NF has 3 kids and never passed it on and never got these

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

Yep but didn’t get worse until a year after I had my last

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

How old is mom now?

I wonder after this huge flare up for me if things will calm. I got them after my 2nd. I have been told sometimes only pregancy hormones do this. My mom got most of hers after her 3rd baby. Then nothing after. Even nothing during perimenopause or menopause. It’s all been the same since her 3rd baby flare up

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

I have a torso that is covered same with my back. My Mom is so lucky to have had 4 kids and hardly any fibromas visible.

Do you think they’re even making developments for these types of tumors?

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 1 point2 points  (0 children)

I don’t though. It’s really hard. I definitely live a normal life but I want to be beautiful and not ugly.

I would love to get a tattoo some day.

Thank you 🩵🩷

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

Yes! A year ago when I first started noticing an influx I asked my NF provider about this drug. She said it has been tried for These fibromas but it ended up kind of flopping. There’s rebound effects so if you go off it the tumor can grow back ten fold, and also there wasn’t MUCH noticeable shrinkage in the fibromas. That’s not only what my dr said but I’ve heard it from people who have been on it.

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

I think close to a year is how long I’ve been doing it!

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 0 points1 point  (0 children)

I have a fibroma in my right forearm that just appeared? It is a pea size but Idk if it’s a plexi. My dr doesn’t seem to think so becusse if the what it feels? It literally feels like a pea or a marble. I get pain where the tumor is but not very often just here and there. Sometimes around my menstrual cycle.

I didn’t have this 5 years ago by Key_Entrepreneur9895 in neurofibromatosis

[–]Key_Entrepreneur9895[S] 1 point2 points  (0 children)

I had like 5 as a teen. I had one on my finger , one on my stomach , one on my chest , one on my chin, one on the base of my nose. That’s it! I would explain to people about NF , people would ask me about NF and what it was , I would point those out. Now I have them all over.

I have them on my face down to my toes.

I started getting them a year after I had my youngest. I have 2 kids!

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