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

There are two types of NF,  the one you are talking about,  (NF1) one of the initial symptoms are what they call cafe au le spots, they are very light tan in color, and are usually around the private areas. Our daugher had one on her neck, stomach, arm pits, and small ones around her privates.   Most people don't notice them.  We have read that there can be a tie with nf to MM .  There is alot on the internet about nf.  The spots on Kelsey were not raised at all.  Later on though, people with nf can get raised bumps, and they say they are tied to nerve endings and can be painful.  Hope that helps

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

This is very interesting. I'd like to look into this more. So let me get this straight. CarasMom has NF and does not have mm, but Kelsey does have the NF1 type and has mm? Is that correct?

Mar  

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

Hi. My five year old daughter (Hayley) has NF1 and MM. My wife also has NF1, but no MM. My daugher was diagnosed with MM on 2/2/03 after she had a mild TIA. Hayley had surgery in Boston on 5/13/03 and has been great ever since. She only had MM on one side and Dr. Scott said that the other side looked really good. She had her one year follow up arteriogram last June ('04) and she received an excellent report from Dr. Scott. I hope this helps.
Ricky

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)

These facts are very interesting to me, I have to do some research on this. For the life of me I can not remember the two being related in any of my research. Unless I'm having a senior moment.

Pat, Kelsey is in my thoughts and prayers. Hang in there!

Mar