Multiple Symmetrical Lipomatosis (MSL)

September 20, 2004

Hi all, first-poster here,

Alice, I too have many large lipomas, in the area you mention and also on my

upper back and shoulders. I have been diagnosed with Multiple Symmetrical

Lipomatosis (MSL) aka Madelung's Disease, which is an extermely rare (about

200 known cases worldwide) mitochondrial disorder of unknown origins. There

have been SOME familial and environmental correlations (especially chronic

alcoholism, which BTW isn't me) but the mystery remains. I don't know

whether this particular disease is very old hat to this group, having only

read and searched the archives a bit, so I won't elaborate at this time.

Suffice it to say, I suffer from many of the typical mito symptoms (and some

others) discussed in this group.

I have had two surgeries, and it was only after the second (three years ago)

that I determined my own diagnosis, since confirmed by Dr. Toran

chief of neurology at Newton-Wellesley Hospital, and just very recently, by

Dr. Didier Cros neurologist at Massachusetts General Hospital, Boston. I

would caution that IMHO many general surgeons are dismissive of lipomas

(having excised many " normal " ones, no doubt) until they finally stumble on

a neurologically involved, deeply rooted, non-encapsulated complex of

lipomas. My first surgeon was essentially clueless, and greatly surprised by

the very rapid re-growth. My second surgeon was very thorough and careful

(apparently....I was out) but also shocked at the oddities of the lipomas

and also at the re-growth.

Anyway, Dr. Cros (somewhat of a local MSL expert, having actually seen two

cases before me) and I are hopefully about to start (finally, after MUCH

searching and struggles) a course of tests including MRI that will hopefully

guide the understanding of just which of my many debilitating symptoms are

systemic (broken fatty acid metabolism and related feedback distortions) and

which are due to mass effect by the lipomas, i.e. pressure on or invasion of

nerves, spine, brain, blood vessels, salivary glands, etc. Possibly this

will lead to lipoma surgery, but this time I will be personally involved

(except during the excision :-) of course) or it won't be happening. This is

IMHO very dangerous albeit potentially worthwhile surgery in a high-risk

region. I will want a highly-skilled neurosurgeon, and I will be

investigating his/her background and experience before any surgery. I may

sound harsh, but I think I have valid reasons for my caution.

I hope my comments are and will be helpful here. Please allow me to say that

my first impressions of this group are very favorable, on several counts.

Thank you to all contributors for your insight, information, and gentle

caring. Blessings to all of us sufferers, may our paths be lightened.

Steve D.

P.S. What is meant by " CI " ?

> Date: Sat, 18 Sep 2004 21:44:57 -0600

>

> Subject: Re: Lipoma

>

> ,

>

> Please tell thank you and that I appreciate him sharing his

experience with me so that I'll be prepared. That was very sweet of him.

I didn't know he had three removed. Where did they remove them from?

>

> I still have to find a doctor who will tackle this as it starts at the

base of my neck and goes up the back of my head about mid-way which is

probably going to be a difficult surgery as it's so large. When the CI was

done in March, the surgeon looked at the area of the swelling and reported

back that it was just soft tissue. I know he will have to be consulted on

this as it's very close to the CI. The endocrinologist suggested that I see

a general surgeon. What kind of surgeon removed your son's lipomas?

>

> Alice

September 20, 2004

Steve

Welcome to the group. I am glad you are posting.

We do have at least one member with MSL, maybe more.

I have hundreds of lipomas - most small, but a few large ones. I am

beginning to experience a lot of pain from them and they seem to add to my

cramping in some areas.

Again, welcome,

laurie

>

> Reply-To:

> Date: Mon, 20 Sep 2004 03:52:49 -0400

> To: >

> Subject: Multiple Symmetrical Lipomatosis (MSL)

>

> Hi all, first-poster here,

>

> Alice, I too have many large lipomas, in the area you mention and also on my

> upper back and shoulders. I have been diagnosed with Multiple Symmetrical

> Lipomatosis (MSL) aka Madelung's Disease, which is an extermely rare (about

> 200 known cases worldwide) mitochondrial disorder of unknown origins. There

> have been SOME familial and environmental correlations (especially chronic

> alcoholism, which BTW isn't me) but the mystery remains. I don't know

> whether this particular disease is very old hat to this group, having only

> read and searched the archives a bit, so I won't elaborate at this time.

> Suffice it to say, I suffer from many of the typical mito symptoms (and some

> others) discussed in this group.

>

> I have had two surgeries, and it was only after the second (three years ago)

> that I determined my own diagnosis, since confirmed by Dr. Toran

> chief of neurology at Newton-Wellesley Hospital, and just very recently, by

> Dr. Didier Cros neurologist at Massachusetts General Hospital, Boston. I

> would caution that IMHO many general surgeons are dismissive of lipomas

> (having excised many " normal " ones, no doubt) until they finally stumble on

> a neurologically involved, deeply rooted, non-encapsulated complex of

> lipomas. My first surgeon was essentially clueless, and greatly surprised by

> the very rapid re-growth. My second surgeon was very thorough and careful

> (apparently....I was out) but also shocked at the oddities of the lipomas

> and also at the re-growth.

>

> Anyway, Dr. Cros (somewhat of a local MSL expert, having actually seen two

> cases before me) and I are hopefully about to start (finally, after MUCH

> searching and struggles) a course of tests including MRI that will hopefully

> guide the understanding of just which of my many debilitating symptoms are

> systemic (broken fatty acid metabolism and related feedback distortions) and

> which are due to mass effect by the lipomas, i.e. pressure on or invasion of

> nerves, spine, brain, blood vessels, salivary glands, etc. Possibly this

> will lead to lipoma surgery, but this time I will be personally involved

> (except during the excision :-) of course) or it won't be happening. This is

> IMHO very dangerous albeit potentially worthwhile surgery in a high-risk

> region. I will want a highly-skilled neurosurgeon, and I will be

> investigating his/her background and experience before any surgery. I may

> sound harsh, but I think I have valid reasons for my caution.

>

> I hope my comments are and will be helpful here. Please allow me to say that

> my first impressions of this group are very favorable, on several counts.

> Thank you to all contributors for your insight, information, and gentle

> caring. Blessings to all of us sufferers, may our paths be lightened.

>

> Steve D.

>

> P.S. What is meant by " CI " ?

>

>> Date: Sat, 18 Sep 2004 21:44:57 -0600

>>

>> Subject: Re: Lipoma

>>

>> ,

>>

>> Please tell thank you and that I appreciate him sharing his

> experience with me so that I'll be prepared. That was very sweet of him.

> I didn't know he had three removed. Where did they remove them from?

>>

>> I still have to find a doctor who will tackle this as it starts at the

> base of my neck and goes up the back of my head about mid-way which is

> probably going to be a difficult surgery as it's so large. When the CI was

> done in March, the surgeon looked at the area of the swelling and reported

> back that it was just soft tissue. I know he will have to be consulted on

> this as it's very close to the CI. The endocrinologist suggested that I see

> a general surgeon. What kind of surgeon removed your son's lipomas?

>>

>> Alice

>

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September 20, 2004