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Definition For Familial Multiple Lipomatosis

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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Re: Definition form Familial Multiple Definition

Post by sjohn » Fri Aug 05, 2011 7:14 pm

ryan wrote:@ bo

How old are your children? I just ask because I didn't receive my first lipoma until 24, and the growth of multiple lipomas didn't occur until 4 years later. I also ask because my wife and I are in the process now of trying to having children. I'm very afraid of passing down this condition, as I would never want my child to feel like I do. BTW, my parents don't have any lipomas (my living grandparents don't have any either, and my mom doesn't recall her parents, now passed away, having any issues with lipomas). My older brother has about 8 or 9 of them (I think about how nice it must be to have only 8 or 9) and my younger brother has one tiny one.
This is indeed strange. Not only that your parents and grandparents never had any, but also that u and all of your brothers have em. I wonder what is the hidden linkage here.
Laura Roslin

Re: Definition form Familial Multiple Definition

Post by Laura Roslin » Sat Aug 13, 2011 11:47 pm

I'm a caucasian female, 52 years old, and have had lipomas since I was 20.

I think they are familial, because my brother has them too.

He and I also have problems with developing keloids (thick scar tissue over cuts or injuries)

For the commenter who was told his parents were too close genetically, please read this.
My mother was born in a foreign country on the other side of the globe from my father. (They met during WWII). There is no way they can be related even distantly.

It isn't about being fat: I was very slender as a youth, almost bony, until 30 years old.

The lipomas keep growing, and keep coming:

The lipomas started in my fore-arms in my early 20s.
In my late 20s, a few lipomas developed in my thighs.
I then had the ones in my arms removed by a cosmetic surgeon.
-the scars are very thin lines, results pretty good.
- the surgery did provide some relief & my arms looked more normal.

I didn't have time to take care of myself from 30-50 years of age.
The lipomas did not increase much in my 30s or 40s.

In early 50s, I have many more lipomas in my arms, now on front and back of fore-arms.
Don't seem to have any noticeable ones in upper arms.

The lipomas in my thighs have gotten a bit bigger and are much more painful.

Last week, suddenly I had lipomas on my knees.
Just recently I had been on my hands and knees on a hard floor, doing some scrubbing.

Pressure or injury can trigger lipomas I've read.

The lipomas are usually capsules, so surgery, liposuction or injections are only treatment.

Excercise doesn't eliminate them, I had them when I weighed 100 pounds (5'2").
I was very very active when I first developed lipomas. Not a bit of fat on me, except the lipomas.

For ladies reading this, my menopause started at 50, and was complete at 52, so it wasn't tied in any way to lipomas.

For those of you balking at surgery - I can only say that often the lipomas get bigger over time.

With small lipomas, if you have surgery (cosmetic surgeon please) then you will have tiny white lines for scars, they can be invisible or nearly invisible.

If you let the lipomas get big before they are removed, then you may get an indentation in the surface of the limb, along with scars.

I have both. I had small lipomas removed, and large ones.

What will I do now?

1. I'm cutting out artificial sweetners, switching back to organic milk, going back on vitamins and some enzymes, also including apple cider vinegar. These won't cure the lipomas, but may slow down the growth.

2. I've written a researcher (article was posted in the treatment section of this forum) who is experimenting with injections for lipomas. This is a treatment, not a cure, but is better than what I have now.
"Injectable Collagenase reduced lipoma by 93% an average"
BioSpecifics Technologies Corp.
Thomas L. Wegman, President
(516) 593-7000
thomas_wegman@biospecifics.com
http://www.lipomaboard.com/viewtopic.php?f=3&t=4

3. I'm going to start working over time to save up money to have a cosmetic surgeon remove as many of the lipomas as possible. I'll save for the injections if they are ever approved. If we can spend money on nice cars or electronics, then I can spend money on removing these lipomas.

Like many here, I feel disfigured by these and want to do something about it.

I am really glad for this board.
bojacx

Re: Definition form Familial Multiple Definition

Post by bojacx » Mon Aug 15, 2011 4:41 am

For Ryan:

I have 3 girls 32,31 and 26. None of them have lipomas. I have one brother 52, and two sisters , 54 and 49. None of which have lipomas either.
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Re: Definition form Familial Multiple Definition

Post by BinTN » Tue Aug 16, 2011 5:48 pm

I have dozens of lipomas ranging in size from a few millimeters to about 10cm. I have had them since my late teens (I am 51). Early on a few were removed and tested. All were benign. I know this condition is inherited going back at least 4 generations in my family.

I also have severe Idiopathic Neuropathy in my legs and hands. Just wondering if others with FML also have Neuropathy. It started at about age 40. According to the doctors at Mayo Clinic (my primary care doc sent me there) It is possible that my MFL and Neuropathy may be releated to a possible low level of Protease which is produced by the pancreas. There are no tests to confirm their educated guess. Apparently one treatment for slowing the progression of HIV (I don't have thet) is to begin the patient on a Protease inhibitor regimen. A side effect of reducing the Protease produced by the liver is the formation of lipomas and Neuropathy. Neuropathy is often caused by diabetes, smoking etc. I have none of the triggers that are usually looked at as a cuase of Neuropathy.

Several other family members have multiple lipomsa but so far only one has developed Neuropathy. Does anyone have any thoughts on the low Protease theory from Mayo Clinic?
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Re: Definition form Familial Multiple Definition

Post by Guest » Wed Aug 24, 2011 7:26 pm

I am a 46 year old male with multiple lypomas. Are there any bio tech companies or big pharma companies working on a cure. Does Cryoablation work for lypomas?
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Re: Definition form Familial Multiple Definition

Post by matt » Thu Aug 25, 2011 6:39 am

Hi there!

The quick answer is, yes there are companies which are studying and developing treatments towards lipomatosis. But that so called sad part is that they are mostly developing methods to remove localized and unwanted fat because this in general has a lot bigger market than just lipomatosis. It's ridiculous since there are so many of us, I know but what can you do. I hope the treatment, or even cure, is a little bit closer if we unite and share our knowlidge and experiences. BioSpecifics for example has developed a collagenase injection that is said to have reduced the lipoma by 93% with just one injection. Collagenase is a natural substance in our body, that unlike collagen which holds things together, breaks things apart. So it kind of solves the problem by destroying the tumor but still the tumor cells in my understanding are still there...?

You might want to read through the whole Lipoma Treatments and Cures thread.

PS. I don't know about Cryoablation treatment, maybe someone else here does?
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
honeybadger101

Re: Definition form Familial Multiple Definition

Post by honeybadger101 » Sun Sep 25, 2011 7:45 am

ryan wrote:@ bo

How old are your children? I just ask because I didn't receive my first lipoma until 24, and the growth of multiple lipomas didn't occur until 4 years later. I also ask because my wife and I are in the process now of trying to having children. I'm very afraid of passing down this condition, as I would never want my child to feel like I do. BTW, my parents don't have any lipomas (my living grandparents don't have any either, and my mom doesn't recall her parents, now passed away, having any issues with lipomas). My older brother has about 8 or 9 of them (I think about how nice it must be to have only 8 or 9) and my younger brother has one tiny one.
Ryan, you and I are in the same situation. I'm going in for surgery Monday 26th of Sept to have 3 on my stomach removed. I had to do some agressive hunting for an affordable doctor. I don't know if the doctor is any good though. Wish me luck brother.
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Re: Definition For Familial Multiple Lipomatosis

Post by Charlupa » Sun Sep 25, 2011 10:36 am

Honeybadger,
Good luck with your surgery. Im sure everything will go great and please keep us posted after recovery :D
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Re: Definition For Familial Multiple Lipomatosis

Post by matt » Sun Sep 25, 2011 4:44 pm

Honeybadger, good luck! Break a leg ;)

Unfortunally sometimes we do have to surrender for surgery to remove lipomas. I have done it too once when I had one that was pressing on my nerve. I had four taken out at once and although I still have visible scars, I'm happy I did go through it. I wouldn't want to do it again, and luckily none are painful atm. Please tell how it went!
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
Laura

Re: Definition For Familial Multiple Lipomatosis

Post by Laura » Thu Oct 27, 2011 2:42 pm

Good luck!

I am saving up for surgery.

But I too search for answers as to the cause, because the lipomas will keep coming even when you get some removed.

I have had some lipomas since I was 20. Now I am 52 and it seems that they are spreading and growing in size.
Until recently, they had been insignificant, or bearable. Not dramatically disfiguring.

Now I have them on my knees and lower legs (never before) and even on my wrist.

We need to find out what causes them.

The only doctors claiming to find a cause are veterinarians, who believe that in BIRDS, it is caused by a a high fat diet and possible thyroid deficiency:
If caught early, most lipomas can respond to nutritional therapy. Often, affected birds are on high fat, all seed diets. Weaning slowly onto a balanced, low fat diet (pellets + fruits and vegetables) is often successful in reducing or resolving lipomas. Iodine supplements may help stimulate the thyroid gland and increase the metabolism of fatty tissues. Stimulate your bird to exercise at least twice daily to help with weight reduction.
http://www.vcahospitals.com/main/pet-he ... birds-/964
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Re: Definition For Familial Multiple Lipomatosis

Post by lotsolipoma » Fri Feb 03, 2012 10:18 pm

Just found this board today after looking for some info on lipoma's. Figured there aren't that many of us so we must band together for some sort of relief. Anyways I am currently 26 years old. I believe I found my first lipoma at around 20. My dad has a few but I am littered with them. I posted 100+ but have never actually counted because it would be very hard to do so. Initially it kinda made me a hypochondriac and I still do worry sometimes with so many on my body how can I be sure that 1 isn't malignant? Now I don't worry as much as I have come to terms with the fact that something will kill me one day so who cares about these bumps if they aren't painful. I did have two removed that were pinching nerves which cost me a fortune and still owe on it since my old insurance screwed me. The ones in the legs and arms don't worry me as much as the ones on my abdomen/lower back seeing as there are some pretty vital things hanging out in there. Anyway, I just figured I'd get it off my chest as I look for some sort of logical way to stop this infestation of my body. Any advice or feedback is definitely welcome. Thanks
Whitelotus

Re: Definition For Familial Multiple Lipomatosis

Post by Whitelotus » Tue Feb 07, 2012 8:00 am

Hi, i'm 24, male, healthy otherwise. Have been misinformed and misdirected earlier. have about 25 to 30 of these in my forearm, lats, upper abdomen, back and neck. First noticed it on my left wrist, when it was diagnosed to be a ganglion cyst. Ever since numbers kept growing.
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Re: Definition For Familial Multiple Lipomatosis

Post by matt » Tue Feb 07, 2012 8:43 am

Hi whitelotus and welcome!

I'm not too surprised anymore that you were given a ganglion cyst diagnosis eventhough a lipoma should be easily separated from a cyst. Cyst is filled with fluid and is somewhat soft. Lipoma is filled with fat cells and has a rubbery feeling. Lipoma is not usually connected to the skin and is palpable and movable contradictory to a cyst.

Cyst usually does not move under the skin but lipoma does.

According to the wikipedia a ganglion cyst holds somewhat thicker fluid than other cysts so I guess it could be misdiagnosed.
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
Mark

Re: Definition For Familial Multiple Lipomatosis

Post by Mark » Wed Feb 15, 2012 4:04 am

I probably have 20-30 lipomas that I know about right now ranging from pea sized to maybe large grape sized. My father has these all over his arms and torso, and my two sisters have told me that they have them as well. My brother may; I do not know. I noticed my first at about 23 and I've steadily, one or two or three a year, noticed them. At first they were limited to my thighs and groin and back but I now have the first one on my leg that's obvious and I have three in my arms - which are painful to the touch, unlike the ones in my groin. I'm not sure what path I'm going to take yet, but I'll probably start to have them surgically removed.

I hate them and do not want to end up like my father - his literally hang off of his arm, they are so big.
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Re: Definition For Familial Multiple Lipomatosis

Post by matt » Wed Feb 15, 2012 9:14 am

Hi Mark!

Thanks for posting.

I feel you man but you do not have too many of them yet, luckily. If they bother you too much, then have them removed. You will have some scars but if it's ok then go ahead. I would try to find a surgeon who knows about the minimally invasive technique. Not many do or are willing to :( It's a struggle and very often you just have to accept that docs don't really care about the outcome.

If you are more patient you could just wait and see if this board will have any alternative treatment methods to offer... :roll:
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
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Re: Definition For Familial Multiple Lipomatosis

Post by LipomasSuck » Sun Feb 19, 2012 3:50 am

Thank you all for posting your stories, struggles, and support. For the first time in my life I feel I have a name for what is happening to me. Like so many of you I found my first bumps in my mid-20s. Two of them were painful when resting my arm on my desk at work. After conferring with my family doctor I had two removed by a surgeon and tested. They were benign, but I have since found around 15 more. It is nowhere near as bad as some of you, but I still feel self-conscious about them and worry about them getting bigger and more of them appearing.

The only person in my family that I know has had these is my grandmother. She had a couple, but now that I know this is an inherited issue will check with her and everyone else to see if they kept their issue to themselves. Other than inheriting this, does anyone have any ideas of other causes (vaccines, medication, etc.)? It appears that diet is not a cause, but does a bad diet make it worse?

Thanks again for posting and making me feel that I am not alone.
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Re: Definition For Familial Multiple Lipomatosis

Post by matt » Mon Feb 20, 2012 12:08 pm

Hi there and welcome! You are definitely not alone ;)

Unfortunally if you have more than one lipoma the chances are that you will get new ones. For some odd reason some people who only develop one lipoma may never get a new one? I have a friend who had a lipoma in his arm. He had it cut out and has never had new lipomas since. It was around 5 years ago.

Of course it doesn't mean that new ones will never pop up but it's kind of strange from my point of view.

Now I do have a theory for that and I've written about it in lipomas don't metastasize, right?

So maybe if the one and only lipoma is removed early enough it would - sometimes at least - prevent new ones from appearing. Or it could be that sometimes the body's immune system gets alerted soon enough and only one lipoma is ever created.

At this point it is anyones guess whether vaccines, medication or similar causes lipomas. There's the cause of lipomatosis thread which talks about substance called Agent Orange that used in the war. It speculates whether the substance would have induced the lipomas. And Ken Gullan thinks asbestos caused his lipomas.

So I think it is possible in some cases that external factors contribute to lipomas and lipomatosis.
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
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Re: Definition For Familial Multiple Lipomatosis

Post by caribou » Mon Feb 27, 2012 10:31 am

Hi everyone! Just found this board, quite excited as I am interested in familial multiple lipomatosis.
I come from a FML-suffering family (from Finland, like the admin, it seems. Who knows if we're related ;p). My father has it and his mother had it. I don't know how many lipomas they have/did have since it's quite a sensitive subject and I don't want to pry. However, my dad is in his fifties now and he has several big ones on his arms and at least a few elsewhere on his body.

I'm 25 and so far I have no visible lipomas, although I think I've had one or two small ones that I can feel for a couple of years now. So since I seem to have inherited my father, I assume I will get more lipomas in the future. (In fact, I probably wouldn't have discovered my lipomas at all yet, if I hadn't found out about FML a few years ago, and as the hypochondriac that I am, been searching my body since then :oops:).
I'm also a medical student, although still very early in my studies, and as a probable future FML sufferer (heh), interested in the cause and possible cures from a medical point of view. Although I deem it highly unlikely that a cure which could 'fix' the mutation causing this is going to be invented any time soon, but who knows if something else would come up, I guess.

I've also wondered about the possibility of having children, and passing FML on to them. I know lipomatosis has affected my father's self esteem, possibly it will affect mine later. It feels scary that I could pass this on to my children and the children of my partner, if it could torment their lives and make them feel insecure later in life. It feels like a silly reason to give up having children since it's a benign condition, but I don't know. I still haven't told my partner about FML either, and am somewhat scared to do so.

Anyway, I look forward to searching this board and just wanted to say hi, in case I feel the urge to post something later. I'm not actively looking for cures since it's not affecting my life much yet, so I may not post that much. I'd still like to read more about this and read your experiences, so I will certainly be checking up on this forum from now on. :)
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Re: Definition For Familial Multiple Lipomatosis

Post by matt » Mon Feb 27, 2012 7:55 pm

Welcome! ;) I'm looking forward to your possible future contributions.

I have no children either but I can say I have thought about the same. Still I'm perhaps not so surtain that no cure will be found anytime soon. And we already have some successful treatments like ozone eboo therapy and deoxycholite injections although Kythera Pharmaceuticals has said to be given up on it for lipomas.

The truth is that when you dig a little deeper the world starts to look much different than what you have been said and taught.

In my opinion the genes are not as ruling as many of us think.

Stick around! 8-)
Hi I'm Matt - the creator and owner of this site. I have dozens of small nasty lipomas all over. I've tried many treatments including surgery and Lipostabil injections. See my lipoma prevention supplement recommendations and please consider donating a small amount via PayPal (click the Donate button) to keep this site up and running. Thx!
Jimbo

Re: Definition For Familial Multiple Lipomatosis

Post by Jimbo » Sun Apr 08, 2012 9:00 pm

I am 36 and I have had FML since puberty, my father has FML also. My father’s is much worse than mine hi torso and arms are much disfigured. Some of his bumps are about the size of a golf ball. He must have about 300 lumps in all. I have about 200 lumps – they are on my legs (inside thighs and to the side of knees). My arms have lumps on the fore and on the underside. I also have lumps on my lower back, stomach, ribs and chest. My sister has a few lumps but nowhere near as excessive as mine or my father’s (may be about 10 lumps in all) in addition the onset of her condition was much later in life – when she hit her late 30s. My father is not aware that either of his parents or brothers or sisters had the condition.

I used to be about 118 Kgs, but in the last 3 years I have lost a significant amount of weight due to exercise and dieting I now weigh 78 Kgs. My body fat percentage has been reduced significantly as I have progressed with my weight loss. Although my lumps have not gone, they are significantly smaller, and far less noticeable – some have almost disappeared completely.

I have always had problems maintaining a healthy weight, and I am convinced that FML has played a part in this – although I now I recognise that I was overeating, no one could accuse me of over eating or being sedentary now as I count my food intake and exercise most days on a rowing machine. One thing I have noticed though is that although I do have an extensive exercise routine I still have problems shifting body fat, and no matter how hard I try I cannot get my body fat to drop below 16 to 18%, I gain weight very quickly even though my overall calorie intake would be less than recommended daily allowances.

I am also convinced that FML causes other symptoms, and I wanted to ask other people who think they have the condition whether they have noticed, joint pain, muscle pain, excessive bone cracking, and stiffness. Both my father and I have joint and muscular pain. My father’s has got significantly worse with age – and Doctors seem to think it is arthritis. No one in the medical profession seems to be linking or attempting to link FML with other disorders – I would like to know if this is because there are no obvious links or not.

I have read with interest other people’s posts on here regarding their experiences relating to esteem and body image. I have felt very self-conscious about my body appearance to the extent where I would not visit a public swimming baths. However, as I have aged (and got fitter) I have felt better about my appearance and I try to love the body lumps and all that I have – in some ways I am lucky to have the body I have as it does function quite well.

What I am more concerned about is whether the lumps are symptom of a fat disorder, and whether that fat disorder affects metabolism, nervous system or blood chemistry (cholesterol, iron etc.). As you may have already noticed there doesn’t appear to be much research on this disorder because it does not appear to be directly life threatening – however, until someone does some serious research into it no one can really know what the full impact on overall health and fitness could be. Sure the lumps look unsightly, but the fact that the lumps are there at all is more of a concern as it must be a sign of malfunction at cellular level, which may have far wider affects and symptoms other than just the ugly lumps – these affects must be detectable, and I think with a little more analysis the medical profession would have a much better understanding not only of FML, but the way in which our bodies use and store fats.
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