Hi Nancy,

I personally don't remember ever hearing of anyone having both MM and NF and I know very little about it, but read it’s a complicated disorder. 

This is a Link that perhaps may help you understand it better. Good luck.

The National Neurofibromatosis Foundation, Inc.
http://www.nf.org/what_is_nf/

Mar

Hi....I had two large patches brown spots about six inches in length and 3 inches in width on back of my legs by my ankles...kind of like millions of freckles put together...my father n law used to ask Brent if I wash the back of my legs....i scrupped so hard but never came off....now it all ties together...I had B12 defiency which totally screwed (really) my nerve system in my legs mainly...I was close to being wheel chair bounded but that was 3 years ago....over time, continous monthly B12 shots...slow healing..those large brown spots are gone...I didnt even think of them until I read this post....so I know definitely related with nerve endings only they started to appear before my problems were serious....so could be warning signs of terror within the system.  My opinion if NF and MM are related it could be what area of the brain MM is affecting that is involved in certain parts of body where the brown spots would appear.    The brown spot was just like a freckle but HUGE...same color as the freckle and does nothing more than what the freckle does...in the summer when I was tan...was not noticeable as it was when the summer ended.  xo CarasMOM

Mar....I was never told I had NF !!!! But I had that brown patch for a long time though.... But I am going to ask my primary doctor though when I take one of the boys for his appt next week.  I was never told I had peripheral neuropathy either but I have ALL the symptoms for that.   Cara's neurologist once said there was a "broad spectrum of disorders Cara may have"...before they could pinpoint the MM.   Other thing...Cara is adopted so it wouldn't be biological connection of her MM and my if I have "NF".  But sure is interesting though and worth researching into which i will do.  CarasMOM

Mar,  Yes, Kelsey has NF1 (diagnosed when she was 1), . and she has MM, and had surgery with Dr Scott in 2002 (both sides).  Surgery might have worked, however, surgery ended in a terrible stroke immediately after.  We are working every day (therapies), but have a long way to go......  Pat (Kelsey's Dad)