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I believe I may have FML

Familial multiple lipomatosis is a rare disease. With this condition you get multiple lipomas (dozens or hundreds) all over your body. Lipomas are usually encapsulated.

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Posts: 2
Joined: Wed Dec 14, 2016 1:03 am
Number of lipomas: 11-30

I believe I may have FML

Post by Spenny1984 » Fri Dec 16, 2016 1:42 am

Hi everyone!

I belonged to his board before but decided to rejoin as I enjoyed reading others' experiences with lipomas and sometimes I get frustrated with mine. I'm 32 yo male, 175 lbs, and I'd like some insight and opinions about mine so please feel free to reply with any info you think may be helpful. I discovered my first one when I was 12 on my upper, inner left thigh, which to this day has been the biggest I've had (I've since had it removed). It was "dome" shape the size of a golf ball. Of course, being young, I freaked out and my mom brought me to the doctor, who told me it was a a "fatty" deposit had nothing to worry about. Not too soon after, I discovered a small one on my left forearm right above my wrist. Again I had it checked out and was told it was nothing. For years I didn't notice anymore. I should mention that it's interesting that I believe I had injuries in the same spots as these lipomas (I accidentally got my wrist slammed in a door)Fast forward to college, I had the on-call campus doctor take a look at the big one on my leg. His exact words were "these are common, I actually have some too, and there's nothing you can do about them." So I left it at that. Fast forward another five years or so, in my mid 20s, I then noticed three or four on my right thigh and a few on my left thigh. Since I knew what they were, I did not go to a doctor and just accepted it for what it was. About four years ago I finally got frustrated and asked for a referral to the general surgery department for an opinion. It was there that she said the word "lipomatosis" and that's what I had. She asked if they hurt. I thought about the question and said "no" but they are ..."achy" sometimes is the best way I described them. She removed one right there to send to biopsies. It came back benign as suspected. Since then, I have seen her three other times and have had maybe 7 or 8 removed.

What Id like insight about is do you think I have FML? Or just "multiple lipomas" ...I asked my whole family and they do not have them. I have a twin sister who has none. My mom has one on her right thigh but that's it. What's also interesting, is that none of my lipomas are big (no bigger than a nickle or quarter), except for the big one that was on my thigh. They "appear" but then don't grow any more. The one on my wrist since I was twelve has been the same size for 20 years. Also, my lipomas are not "visible" .....I have to feel for them to find them. So I'm grateful for that. I think I may have about a dozen now, minus the ones I have had removed. They are locate on my upper front thighs, my upper and lower arms and a couple on my mid-torso. My question is: Is is possible that these are the only areas they will grow? Why not my back, chest, neck ankles, etc? Is is possible there are types of lipomatosis where you only get them on your arms and legs? Also, I hate the thought that these can grow on my face. I told my surgeon I was worried about that and she said she removes lipomas several times a week from people and has never seen one on someone's head or face. So I guess that's rare? She also said that I'll just have to come back every few years to get some removed. She has patients who do that.

I just wish they would find a treatment since this is so "benign" and "easy" to explain in the sense that every doctor just brushes it off and says it's nothing to worry about. If it's not big deal then why isn't there a cure? I take comfort in the fact that i"m fairly young and hope that in the near future, since medical science is evolving so quickly, that lipomas will become a thing of the past, before they grow all over my body
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Joined: Thu Dec 15, 2011 4:47 am
Number of lipomas: 61-100

Re: I believe I may have FML

Post by fb88 » Fri Dec 16, 2016 3:45 pm

I've never seen it grow on people's face but I have two on my butt cheeks and maybe 1 on my penis foreskin area. 1 around rib cage area and 1 in the lower back. I try to have 6-7 removed a year, have about 50+ now mostly on arms and thighs.

Because it's 'benign', it's not covered by medical insurance, and not worth the development effort from pharma if they cannot make big money on it.
There is a company that developed some fat melting injection but it's much more expensive than surgery and takes multiple injections (I think that's for people want to minimize having surgical scars or fear of surgery).

You said your mom has one on her right thigh. --- the medical community is suggesting it's hereditary so not necc. all your siblings would get it, just as my opposite sex siblings don't have it.
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