Re: spine and mito

[Guest guest]

Mark

I have Multiple Symmetrical Lipomatosis (characterized by very large

upper-truncal lipomas) which is one very rare type of mito disease (which of

course is itself rather rare). One of many occasional accompanied

occurrences with MSL is " spinal epidural lipomatosis " , i.e. within the

sheath of the spinal canal.

Given this rarity within rarity, there's not a lot of statistics to go by,

as to exact corelations with rare OTHER possibly related symptoms. However

it appears that there are MSL correlations with most of the other mito

symptoms, so I went fishing on the " lipoma " theme.

There's some great info in a letter to the editor in NEJM 10/28/99.

Admittedly this is re Cushing's syndrome, but I have my suspicions about at

least SOME inter-relatedness with MSL and possibly other mito, including the

" buffalo hump " (frightful term, but commonly used, and accurate) and other

mito problems induced by certain " anti-HIV " drugs (AZT and other NARTIs).

Perhaps there's a common axis for some of the metabolic screw-ups.

A further search for " spinal epidural lipoma " or " spinal epidural

lipomatosis " at PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi shows a

lot of relevant hits. These articles generally cite MRI discovery.

Importantly, I have no idea whether your cysts are lipomas, this is just my

suspicion. Seems like a reasonable hypothesis though, given the lipid

storage problems of some mito types.

Regards

Steve D.

Date: Tue, 26 Oct 2004 08:59:55 -0700 (PDT)

Subject: spine and mito

> I have a question, how commen are spine problems with

mito? I just receved my MRI reports, short version,

mine is toast! from the top down, including a cyst in

the cannal.

> markb

[Guest guest]

> question, is lipid storage problems, related to

> cholesterol problems?

> my bad cholesterol levels will not come down

Lipid storage disease does not necessarily result in high

cholesterol. I'm not sure if studies have even found a higher-than-

general-population incidence of elevated cholesterol in patients

with lipid storage disorders, but that may be the case in certain

FODs. At least in some FODs, there is no evidence at present to

suggest a correlation.

Regarding the spine and mito, Steve mentioned the lovely buffalo

hump, which I have. (I don't really mind the term, BTW, being a

Kansas history buff, hee hee.) Also have moderate scoliosis and

kyphosis, as well as osteoporosis of the spine with degenerating

vertebrae. However, these changes may not be the result of mito, as

there are other plausible explanations.

Hope you can get some help with your back problems, Mark.

Barbara

[Guest guest]

-

Alice, I am sorry to hear about your additional problems. You are in

my thoughts and prayers. Dawn A

-- In , " A ADAMS " wrote:

> FYI - I am seeing a surgeon on Monday to investigate numerous

lumps on my body, several in the trunk area of my back, but one in

particular on the same side of the cochlear implant that does not

work. This one is the largest that I know of and is about the size

of a fist - I say baseball size. I do not know what the outcome

will be but I've been told that I have both lipomas and cysts. I

haven't counted these " bumps " and I don't think they are in the

100's but they are numerous and in every area of my body (arms,

neck, back, legs) with one very hard one almost on the crown of my

head. All of these produce pain but those on my right side are the

worst right now. The ones on my back are making sleep a little

difficult if I turn the wrong way. The large one on my neck causes

pain up my head, down my back and down the right arm and of course

on my neck if it's touched.

>

> I guess Monday could be just the beginning of another round of

medical appointments. This now seems endless to me. I have tried

to find time for a " break " from all this, but it doesn't seem as if

this is in my future at the moment.

>

> Lipomas are common with Mito. I hear and read it from many.

>

> Alice

> spine and mito

> >

> >> I have a question, how commen are spine problems with

> > mito? I just receved my MRI reports, short version,

> > mine is toast! from the top down, including a cyst in

> > the cannal.

> >> markb

> >

>

>

>

[Guest guest]

Alice,

I too am sorry to hear you are having to deal with this and will be

thinking of you in hopes that they can find a way to make you more

comfortable.

Maggie

> > FYI - I am seeing a surgeon on Monday to investigate numerous

> lumps on my body, several in the trunk area of my back, but one in

> particular on the same side of the cochlear implant that does not

> work. This one is the largest that I know of and is about the

size

> of a fist - I say baseball size. I do not know what the outcome

> will be but I've been told that I have both lipomas and cysts. I

> haven't counted these " bumps " and I don't think they are in the

> 100's but they are numerous and in every area of my body (arms,

> neck, back, legs) with one very hard one almost on the crown of my

> head. All of these produce pain but those on my right side are

the

> worst right now. The ones on my back are making sleep a little

> difficult if I turn the wrong way. The large one on my neck causes

> pain up my head, down my back and down the right arm and of course

> on my neck if it's touched.

> >

> > I guess Monday could be just the beginning of another round of

> medical appointments. This now seems endless to me. I have tried

> to find time for a " break " from all this, but it doesn't seem as

if

> this is in my future at the moment.

> >

> > Lipomas are common with Mito. I hear and read it from many.

> >

> > Alice

> > spine and mito

> > >

> > >> I have a question, how commen are spine problems with

> > > mito? I just receved my MRI reports, short version,

> > > mine is toast! from the top down, including a cyst in

> > > the cannal.

> > >> markb

> > >

> >

> >

> >