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Found 100s lipomas suddenly appearing 2 days ago

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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sam2104
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Found 100s lipomas suddenly appearing 2 days ago

Post by sam2104 » Mon Mar 21, 2016 5:14 am

Hi everyone,

I'm male, 36, and I just found that I suddenly have 100s lipomas on my inner thighs 2 days ago on both of my legs. Three or 4 days ago nothing was there -- I'm pretty sure of this because I was massaging my thigh area during a bath and felt nothing before.

They're bumpy and fairly small (about 5mm in size) but there are a lot of them that seems to be evenly distributed. They seem to be limited to my inner thighs currently. I tried to find more information about this, and it took a while to find that it might be FML. I'll try to set an appointment with my family doc tomorrow. Could this be anything else other than FML? I'm in Phoenix AZ area, and I know about Dr Herbst in Tucson and Dr Luba in Phoenix ... I wonder if I should see him directly.

I'm pretty stressed about this since it seems the disease is not well understood and not a lot of options to prevent it from spreading to other areas or limit its growth?
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matt
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by matt » Mon Mar 21, 2016 12:47 pm

Hi sam2104!

Thanks for posting! Now don't take this the wrong way but you kind of sound like me around 20 years ago when I first discovered my lipomas. I mean, I hadn't really noticed them in such a large number before that it felt like they had appeared over one night. I was terrified and didn't know what to do...

It is very common for people to not notice lipomas at first.

That being said it is quite possible that you are suffering from something else. It's good that you have an appointment with the doc. I'm sure he/she will be able to say what your bumbs are.

Try not to worry too much in advance and please let us know what the doc says!
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: Found 100s lipomas suddenly appearing 2 days ago

Post by sam2104 » Thu Mar 24, 2016 4:46 am

Hey thanks for replying. I gone to see my regular doctor and he doesn't know what it is ... maybe you or someone viewing this will know because my lumps are constantly spreading into places I know for sure they weren't there before.

Since my last post, I found 100s lumps about rice to pea size fairly evenly distributed in my inner thigh. Another day later, they appear on the under side of my thighs (it seems to travel along the prominent ligament that you can trace to the back of the knees), mainly on on the fatty parts of my thighs. On the third day, the lumps appear behind the knees. They're all about the same size, except the ones under my thigh seems to be bigger. Now, there are a few appearing on my arms as well as some traveling to appear near my feet. They're all appear on the left side and right side of my legs at the same time. Also, they're a few millimeters below the skin and not obvious by looking, and you need to push down to feel them.

Each time before new lumps appear, I can feel it a little bit. The spot will feel slightly tingling and slight pain, then about 5 hours later, I will feel the lumps. After the lumps fully form, the pain somewhat disappears unless I put pressure on them, like sitting.

My doctor send out for blood test, but I'm not sure what that will show, and in the mean time, it seems to be spreading all over my body. My main body, head, feet is still clear of lumps at this point. Though now I think my thigh muscles have some ridges to them as well (not lumps like the ones in the tight, but unevenness).
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by matt » Thu Mar 24, 2016 11:59 am

Hmm.. My best guess is that they are not lipomas since lipomas take weeks and months to develop. Unfortunately, it is very common that regular MDs know nothing. But I hope you can see a specialist soon!
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: Found 100s lipomas suddenly appearing 2 days ago

Post by sam2104 » Thu Mar 24, 2016 4:33 pm

I just got the test results from the lab online. The nurse haven't call yet. The CBC test looks normal for everything. Also creatine kinase test and CRP test was performed, both normal. They also tested for mononucleosis that came back negative. I guess at least this shows I'm not dying.

What kind of specialist would I go to for this? This actually took me a long google and no one seems to have this condition -- the only thing that comes close is lipoma, but if that grows slowly then it's probably not that.

My doctor was thinking about sending me to a orthopedist (musculoskeletal specialist), but I'm thinking a rheumatologist better in this case?
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by matt » Sat Mar 26, 2016 4:22 pm

That's a good question and to be honest I do not know for sure which kind of doctor would be the best. Dermatologists should be familiar with lipomas and they should be able to diagnose lipomas by just feeling and palpating them externally. That being said I'm sure there are a multitude of different specialists that are able to do the same. Additionally, only a needle sample can give a definitive answer to your condition and that should be doable by any MD. It's another question whether they want to do expensive and time consuming tests.
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: Found 100s lipomas suddenly appearing 2 days ago

Post by sam2104 » Mon Mar 28, 2016 5:00 am

hm, OK; maybe I'll set up an appointment with a dermatologist as well. I currently have an appointment setup with an orthopedist in a couple of days.
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by fb88 » Thu Mar 31, 2016 4:06 pm

Google "bumps all over body"
sam2104
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by sam2104 » Sat Apr 02, 2016 1:44 am

Thanks; but that doesn't seem to return anything useful. My lumps are under the skin and don't itch. Also, they can only be felt and not seen. I went to the orthopedist and not surprisingly, he doesn't know what they're. I made an appointment with a dermatologist next week.

In the mean time, the lumps/bumps has spread past my knees and toward my legs ... when they past the knees, they more like bumps than lumps ... Some of it also spread upwards toward my lower abdominal layer of fat. All of them seem to be in the layer of tissues between the outer skin and muscles.
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by matt » Tue Apr 12, 2016 4:47 pm

Hi sam2104! Have you gotten any confirmation concerning your condition?
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: Found 100s lipomas suddenly appearing 2 days ago

Post by sam2104 » Fri Apr 15, 2016 5:56 am

Hi matt; I went to see the dermatologist a few days ago. He palpate the lumps and bumps, and his preliminary diagnosis is cysts/lipomas ... he said to give him a week to review the charts and tests my primary doctor has done.

Do you guys also have muscles that feel little bit like bumps? Also, do you feel patches of them about to form (I have tingling and numbing sensation). What I find very odd is that my left and right side's lumps/bumps appear at the same time, an exact mirror image as it travels toward my feet. Does that happen with you guys as well?
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by wishbg » Thu Apr 21, 2016 11:20 am

I would suggest you to immediately get the Dr schuelsser salts 8,9 and 11 and start taking them(under the tongue) once a day. Do not take these less then 30 minutes before/after you ate.
The salts helped me a lot with the lipoma feeling/pain. This is the only thing i found to be helping, during my 12 years of experience with this curse.
sam2104
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by sam2104 » Thu Jun 02, 2016 6:01 am

Hey guys, just want to update you on my condition. I have not gone back to the dermatologist since it wasn't causing me any pain or discomfort any more. Though they're still there -- which is odd. The doctor said I could do an MRI if I want, but since MRI is not 100% risk free because of the injections I'm not too keen on doing it.

In the past month, there are no new lumps that I notice. Some of them that form in my upper arm didn't spread to my lower arm like my legs did (I was afraid of them going all over my body). So I'll leave them alone for now. Thanks to everyone that reply and take an interest in my condition. I'll update if anything changes.
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by Lawrence » Wed Dec 21, 2016 11:38 pm

I feel like I am experiencing the same issue, with Lipomas seeming to appear suddenly every few days. They definitely feel like Lipomas and I have had several removed and confirmed to be Lipomas. I have been using a Sauna, and I just heard that Saunas increase Growth Hormone. Perhaps the sauna use is causing new ones?
sam2104
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Re: Found 100s lipomas suddenly appearing 2 days ago

Post by sam2104 » Wed Nov 18, 2020 7:14 am

Hey everyone, another update.

I accidentally came upon a rare condition called Darier-Roussy subcutaneous sarcoidosis https://www.dermnetnz.org/topics/darier ... rcoidosis/

I think that's what I really have, though it's self diagnosed lol I have a new primary care physician recently but has not talked to him about this condition.

A year ago, I did found out my mom has a lipoma on her neck (a real lipoma). Her lipoma is pretty big (maybe about 3cm diameter), but not causing any pain. Her doc suggests that she leave it alone unless it really bothers her.
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