Muscle Biopsy

[Guest guest]

Yes, I had a biopsy done years ago. It showed a potential lipid myopathy, as

there were high levels of lipid globules, indicating I may have trouble

metabolising fats. Low carnitine may be the reason.

Jim

[Guest guest]

Yes, I had one performed, in an effort to diagnose myositis,

which, as it turns out, I did not have.

erik

Muscle biopsy

> Has anyone had a muscle biopsy done in the course of their

> investigations for M.E. .....re muscle twitches, fasciculations,

> myalgia etc.?

> Anne

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

I wonder why they appear so surprised that these people had obvious

inflammation come infection with an intracellular and they could not be

diagnosed and they got better with abx!

How slowly will they go? Are they trying to be obtrusive or are they trying

to be obtrusive?

Regarless of the apparently pathetically poor attempts made at isolating

anything apart from mycobacterium avium, I find it interesting that they

(teams from major Paris hospitals and research institutes) were so

adventurous as to give these people antibiotics! And lo and behold! They

improved!

I know that macrophages are involved in fighting intracellular pathogens, so

I wonder why they only tested them for one and not many others.... instead

of publishing this vague paper, and putting about 20 diff names on it

Nelly

Macrophagic myofasciitis: an emerging entity

R K Gherardi, M Coquet, P Chérin, F-J Authier, P Laforêt, L Bélec, D

Figarella-Branger, J-M Mussini, J-F Pellissier, M Fardeau, for the Groupe

d'Études et Recherche sur les Maladies Musculaires Acquises et

Dysimmunitaires (GERMMAD) de l'Association Française contre les Myopathies

(AFM)

----------------------------------------------------------------------------

----

Groupe d'Etude et de Recherche sur le Muscle et le Nerf (GERMEN), EA 2347,

Université Paris XII-Val de Marne, Département de Pathologie, Hôpital Henri

Mondor, F-94010 Créteil, France (Prof R K Gherardi MD, F-J Authier MD);

Unité de Myopathologie, Départment d'Anatomie Pathologique, Centre

Hospitalier Universitaire de Bordeaux, Hôpital Pellegrin, Bordeaux (M Coquet

MD); Service de Médecine Interne et Institut de Myologie-INSERM U153 Groupe

Hospitalier Pitié-Salpêtrière, Paris (P Cherin MD, P Laforêt MD, Prof M

Fardeau MD); Service de Microbiologie, Hôpital Broussais, Paris (L Belec

MD); Laboratoire de Biopathologie Nerveuse et Musculaire (JE 2053,

Université Aix-Marseille II), Faculté de Médecine, Marseille (Prof D

Figarella-Branger MD, Prof J-F Pellissier MD); and Laboratoire d'Anatomie

Pathologique A, Bâtiment Monnet, CHR 44000 Nantes (J-M Mussini MD)

----------------------------------------------------------------------------

----

Correspondence to: Prof R K Gherardi (e-mail:gherardi@...)

Summary

Background An unusual inflammatory myopathy characterised by an infiltration

of non-epithelioid histiocytic cells has been recorded with increasing

frequency in the past 5 years in France. We reassessed some of these cases.

Methods We did a retrospective analysis of 18 such cases seen in five

myopathology centres between May, 1993, and December, 1997. The

myopathological changes were reassessed at a clinopathology seminar.

Findings Detailed clinical information was available for 14 patients. The

main presumptive diagnoses were polymyositis and polymyalgia rheumatica.

Symptoms included myalgias in 12 patients, arthralgias in nine, muscle

weakness in six, pronounced asthenia in five, and fever in four. Abnormal

laboratory findings were occasionally observed, and included raised creatine

kinase concentrations, increased erythrocyte sedimentation rate, and

myopathic electromyography. Muscle biopsy showed infiltration of the

subcutaneous tissue, epimysium, perimysium, and perifascicular endomysium by

sheets of large macrophages, with a finely granular PAS-positive content.

Also present were occasional CD8 T cells, and inconspicuous muscle-fibre

damage. Epithelioid and giant cells, necrosis, and mitotic figures were not

seen. The images were easily distinguishable from sarcoid myopathy and

fasciitis-panniculitis syndromes. Whipple's disease, Mycobacterium avium

intracellulare infection, and malakoplakia could not be confirmed. Ten

patients were treated with various combinations of steroids and antibiotics;

symptoms improved in eight patients, and stabilised in two.

Interpretation A new inflammatory muscle disorder of unknown cause,

characterised by a distinctive pathological pattern of macrophagic

myofasciitis, is emerging in France.

Lancet 1998; 352: 347­52

Muscle biopsy

> Has anyone had a muscle biopsy done in the course of their

> investigations for M.E. .....re muscle twitches, fasciculations,

> myalgia etc.?

> Anne

>

[Guest guest]

> Has anyone had a muscle biopsy done? I've had 2, and both showed an

> accumulation of lipids. I think it implies a possible lipid

myopathy. I'm

> seeing someone tomorrow about another one.

>

> Just curious what others think is important to investigate with a

> neuro-muscular specialist..

>

> Thanks,

>

> Jim

Jim

I'd be very interested to hear more about how tomorrow goes. It was

recommended to me to have a muscle biopsy done several years ago - I

was tapped out $$ wise and couldn't pursue it. There are something

like 40 distinct mito disorders (IIRC), but it still appears the CFS

experts don't refer to the CFS mito dysfunction as a 'true' mito

disease, or at least there isn't enuf evidence to presently support

that. Has Cheney recently referred to the elevated lactic acid from

the brain fMRIs as 'focalized mito damage'?

Did you get a Dx code with the poss lipid myopathy, or was it

borderline? Just thinking there'd be benefits, on several levels, to

saying you had a mito disease vs CFS!

Seems like there was/is a trial in Florida, US, using a drug called

DCA? (can't remember if that's the correct name), that had hopes of

helping mito disease, which otherwise currently appears untreatable.

Rgds,

Lance

[Guest guest]

Tim,

I have had 2 done in the past. Both showed an elevated level of lipid

content in the muscle fibers (which I am not yet sure if it definitely

indicates a problem or not}. One showed a moth-eaten appearance, leading to

the diagnosis of a possible lipid myopathy. The second one was diagnosed a

denervation atrophy, which I think may be the result of pure deconditioning.

I am seeking to find a more exact diagnosis. I've read studies on CFS

patient studies, showing some of these things, and showing faulty production

of pyruvate and mild aerobic defects.

I know that I turn anaerobicv quickly, as I produce an excess of lactic acid,

even beyond being out of shape. I'd like to find out things like resting ATP

levels and whether I do have a lipid myopathy. It's strange how the first

one {early in the illness when I was running myself into the ground} showed a

possible myopathy, but the second did not.

So, I'm looking for more answers.

Jim

[Guest guest]

> Tim,

>

> I have had 2 done in the past. Both showed an elevated level of lipid

> content in the muscle fibers (which I am not yet sure if it definitely

> indicates a problem or not}. One showed a moth-eaten appearance,

leading to

> the diagnosis of a possible lipid myopathy. The second one was

diagnosed a

> denervation atrophy, which I think may be the result of pure

deconditioning.

>

> I am seeking to find a more exact diagnosis. I've read studies on CFS

> patient studies, showing some of these things, and showing faulty

production

> of pyruvate and mild aerobic defects.

>

> I know that I turn anaerobicv quickly, as I produce an excess of

lactic acid,

> even beyond being out of shape. I'd like to find out things like

resting ATP

> levels and whether I do have a lipid myopathy. It's strange how the

first

> one {early in the illness when I was running myself into the ground}

showed a

> possible myopathy, but the second did not.

>

> So, I'm looking for more answers.

>

> Jim

Neurosci Lett 1996 Apr 19;208(2):117-20

Sensory characterization of somatic parietal tissues in humans

with chronic fatigue syndrome.

Vecchiet L, Montanari G, Pizzigallo E, Iezzi S, de Bigontina P,

Dragani L, Vecchiet J, Giamberardino MA

Institute of Medical Pathophysiology,

'G. D'Annunzio' University of Chieti, Italy.

Patients with chronic fatigue syndrome (CFS) mainly complain

of symptoms in the musculoskeletal domain (myalgias, fatigue).

In 21 CFS patients the deep (muscle) versus superficial (skin, subcutis)

sensitivity to pain was explored by measuring pain thresholds to

electrical stimulation unilaterally in the deltoid, trapezius and

quadriceps

and overlying skin and subcutis in comparison with normal subjects.

Thresholds in patients were normal in skin and subcutis but significantly

lower than normal (hyperalgesia) in muscles (P < 0.001)

in all sites. The selective muscle hypersensitivity corresponded

also to fiber abnormalities at muscle biopsy (quadriceps) performed

in nine patients which were absent in normal subjects (four cases):

Morphostructural alterations of the sarchomere, fatty degeneration and

fibrous regeneration, inversion of the cytochrome oxidase/succinate

dehydrogenase ratio, pleio/polymorphism and

monstruosity of mitochondria, reduction of some mitochondrial

enzymatic activities and increments of common deletion of 4977 bp

of mitochondrial DNA 150-3000 times the normal values. By showing

both sensory (diffuse hyperalgesia) and anatomical (degenerative picture)

changes at muscle level, the results suggest a role played by peripheral

mechanisms in the genesis of CFS symptoms.

They would exclude the heightened perception of physiological signals from

all districts hypothesized by some authors, especially as the hyperalgesia

is absent in skin/subcutis.

[Guest guest]

Hi Jim - I had a muscle biopsy done 4 years ago - I had been an avid

bicyclist and was suddenly on the couch - we were looking for adult onset

mitochondrial myopathy - results showed some problems in the respiratory

chain, specifically complexes I, II-III. But these problems were slight

and the neurologist felt they could not possibly explain the symptoms. It's

since become apparent that I have an immune dysfunction - am pos for stealth

virus, elevated RNlase, high fibrinogen, screwed up protein synthesis - had

been a vegetarian for 10 years - which, in retrospect, had not been a good

idea! If you have lipid problems, there's a group that's an offshoot of the

mito groups where kids have to use a medium or long length fatty acid - Mead

makes a medium chain triglyceride (it's very expensive - $50 a quart

when you buy it in bulk) Do you remember the movie " Lorenzo's Oil " ? because

the kid in that movie had a lipid problem...Anyway, good luck,

Deb

Muscle biopsy

> Has anyone had a muscle biopsy done? I've had 2, and both showed an

> accumulation of lipids. I think it implies a possible lipid myopathy.

I'm

> seeing someone tomorrow about another one.

>

> Just curious what others think is important to investigate with a

> neuro-muscular specialist..

>

> Thanks,

>

> Jim

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

>>mito groups where kids have to use a medium or long length fatty

>acid - Mead

> makes a medium chain triglyceride (it's very expensive - $50

>a quart

>when you buy it in bulk) Do you remember the movie " Lorenzo's Oil " ?

>because

>the kid in that movie had a lipid problem...Anyway, good luck,

Deb<<<

----------------------------------------

What you said above is interesting Deb.. I have never heard of this

to my recollection. Could you relate more? Or give a link to more

info.?

Too, are medium chain fats related to coconut oil?

Thanks,

Zippy

================================================

[Guest guest]

Hi All,

I haven't posted here in quite some time - Lianna has kept us busy:-)

Briefly, Lianna was given the tentative diagnosis of Psoriatic

Arthritis in April and started on NSAID's which irritated her stomach

terribly. By July, the backs of her knees, ankles and back were

hurting and she had periods of extreme fatigue. Stopped NSAID and

began Sulfasalazine and diagnosis changed to " likely " spondy or ERA.

The rashes quieted and pain seemed to improve for a while.

But since Christmas, left foot is on/off swollen, hands hurt after

five minutes of coloring or bike riding, frequent rib pain, headaches

and again the bouts of extreme fatigue. Her AST has been elevated

for three years with never an explanation found and now the CPK is

slightly elevated. Rhuemy is thinking more of JDM, SLE, MCTD. We've

done MRI which was normal and every lab test you can imagine -

thousands of dollars worth :-( and only find the AST and CPK. Now

she wants to do a muscle biopsy with the hopes of making a firm

diagnosis.

This isn't a needle biopsy, but a surgical procedure - a 3 " incision

with a piece of muscle cut out. Of course, we're very nervous about

this and wonder if it will really bring an end to this diagnosis

process. Has anyone else gone through the muscle biopsy for their

child? Did it give a definite diagnosis? We really do trust this

rhuemy - she's known to be one of the best in the country and is at a

large teaching hospital and actually was one of the speakers at the

conference last year...but a mom can't help but be nervous. This

would be the third time to put Lianna under anesthesia, and she's

only five! I just want this process to end and finally get the right

med. Thanks for any help.

Jo Anne, mama to Lianna (5)

[Guest guest]

Hi Jo Anne! I may be of no help to you but I have never heard of a

muscle biopsy. It sounds much too invasive for me. My question

would be how do you know that you will get a " for sure " diagnosis?

I also am wondering if you have tried methotrexate? It seems to me

that other drugs should be tried to relieve Lianna's pain. I know

that won't give you a diagnosis but it may help her feel better. I

can completely understand your frustration in not knowing what is

going on with Lianna. I wish you the best!

and Grant (11, PsA/Uveitis)

>

> Hi All,

>

> I haven't posted here in quite some time - Lianna has kept us

busy:-)

>

> Briefly, Lianna was given the tentative diagnosis of Psoriatic

> Arthritis in April and started on NSAID's which irritated her

stomach

> terribly. By July, the backs of her knees, ankles and back were

> hurting and she had periods of extreme fatigue. Stopped NSAID and

> began Sulfasalazine and diagnosis changed to " likely " spondy or

ERA.

> The rashes quieted and pain seemed to improve for a while.

>

> But since Christmas, left foot is on/off swollen, hands hurt after

> five minutes of coloring or bike riding, frequent rib pain,

headaches

> and again the bouts of extreme fatigue. Her AST has been elevated

> for three years with never an explanation found and now the CPK is

> slightly elevated. Rhuemy is thinking more of JDM, SLE, MCTD.

We've

> done MRI which was normal and every lab test you can imagine -

> thousands of dollars worth :-( and only find the AST and CPK. Now

> she wants to do a muscle biopsy with the hopes of making a firm

> diagnosis.

>

> This isn't a needle biopsy, but a surgical procedure - a 3 "

incision

> with a piece of muscle cut out. Of course, we're very nervous

about

> this and wonder if it will really bring an end to this diagnosis

> process. Has anyone else gone through the muscle biopsy for their

> child? Did it give a definite diagnosis? We really do trust this

> rhuemy - she's known to be one of the best in the country and is

at a

> large teaching hospital and actually was one of the speakers at

the

> conference last year...but a mom can't help but be nervous. This

> would be the third time to put Lianna under anesthesia, and she's

> only five! I just want this process to end and finally get the

right

> med. Thanks for any help.

>

> Jo Anne, mama to Lianna (5)

>

[Guest guest]

Thanks, Izzie

I'm always amazed to read your posts - you have knowledge in so many

areas :-) Yes, that's pretty much what the rhuemy told us - the

biopsy will tell not only if there is muscle disease, but exactly

which one. I guess we're worried that we'll put her through this and

no abnormalities will be found and we'll still have no answer. But I

guess ruling out the many muscle diseases would be a step in the

right direction. Thanks again for your input. Jo Anne

>

> > Our Hunter had two biopsies - one in shoulder area and the

other in the

> > ankle area. After which our daughter was diagnosed with Systemic

JRA.

> > Sandi

> > Ken Hunter (age 9)

> >

> > **************It's Tax Time! Get tips, forms, and advice on AOL

Money &

> > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

> >

> >

[Guest guest]

Hi ,

Unfortunately, muscle biospsy is the gold standard of diagnosis for

muscle disease, but not always needed because of obvious symptoms and

labs. If Lianna has muscle disease, the biopsy would reveal the

specific type. But if it doesn't, then where are we? As far as

meds, steroids are the main treatment for myositis and I don't

believe they would be prescribed without a certain diagnosis because

of the side effects. Lianna already has an elevated liver enzyme, so

the rhuemy is very reluctant to start meth or any other drugs without

a sure dx. So there we are . . . we're going to have to go through

with the biopsy, aren't we? I was hoping someone would talk me out

of it ;-)

Jo Anne

> >

> > Hi All,

> >

> > I haven't posted here in quite some time - Lianna has kept us

> busy:-)

> >

> > Briefly, Lianna was given the tentative diagnosis of Psoriatic

> > Arthritis in April and started on NSAID's which irritated her

> stomach

> > terribly. By July, the backs of her knees, ankles and back were

> > hurting and she had periods of extreme fatigue. Stopped NSAID

and

> > began Sulfasalazine and diagnosis changed to " likely " spondy or

> ERA.

> > The rashes quieted and pain seemed to improve for a while.

> >

> > But since Christmas, left foot is on/off swollen, hands hurt

after

> > five minutes of coloring or bike riding, frequent rib pain,

> headaches

> > and again the bouts of extreme fatigue. Her AST has been

elevated

> > for three years with never an explanation found and now the CPK

is

> > slightly elevated. Rhuemy is thinking more of JDM, SLE, MCTD.

> We've

> > done MRI which was normal and every lab test you can imagine -

> > thousands of dollars worth :-( and only find the AST and CPK.

Now

> > she wants to do a muscle biopsy with the hopes of making a firm

> > diagnosis.

> >

> > This isn't a needle biopsy, but a surgical procedure - a 3 "

> incision

> > with a piece of muscle cut out. Of course, we're very nervous

> about

> > this and wonder if it will really bring an end to this diagnosis

> > process. Has anyone else gone through the muscle biopsy for

their

> > child? Did it give a definite diagnosis? We really do trust

this

> > rhuemy - she's known to be one of the best in the country and is

> at a

> > large teaching hospital and actually was one of the speakers at

> the

> > conference last year...but a mom can't help but be nervous. This

> > would be the third time to put Lianna under anesthesia, and she's

> > only five! I just want this process to end and finally get the

> right

> > med. Thanks for any help.

> >

> > Jo Anne, mama to Lianna (5)

> >

>

[Guest guest]

Thanks fgor your complements.

the unfortunate thing about muscle disease these days is that the biopsy

seems the best way to figure out whats happening. The fact that the CK/CPK

has been high several times or consistently is not a good sign and its

better for it to be addressed sooner vs latter because if inflammation is

attacking the muscles than it neess to be treated before it gets worse, the

muscles can get destroyed from the inflammation.... so o n....

If it doesn't reveal anything, than thats probably a positive thing because

than at least you all will know there isnt any dermato or another like

disease so it rules ot that and maybe it will help point to what it is..

like why is the CK elevated yet no muscle disease is inexistance?

Sure it's a sucky test and I think it feels easy to ignore it and wait but

elevated ck occuring a lot.. it doesnt sound like a lab mistake or some

random event... can be serious. Hopefully it will bring more answers.

Issadora

On Mon, Mar 10, 2008 at 8:46 PM, Jo Anne <jandjstewart@...>

wrote:

> Hi ,

>

> Unfortunately, muscle biospsy is the gold standard of diagnosis for

> muscle disease, but not always needed because of obvious symptoms and

> labs. If Lianna has muscle disease, the biopsy would reveal the

> specific type. But if it doesn't, then where are we? As far as

> meds, steroids are the main treatment for myositis and I don't

> believe they would be prescribed without a certain diagnosis because

> of the side effects. Lianna already has an elevated liver enzyme, so

> the rhuemy is very reluctant to start meth or any other drugs without

> a sure dx. So there we are . . . we're going to have to go through

> with the biopsy, aren't we? I was hoping someone would talk me out

> of it ;-)

>

> Jo Anne

>

>

> > >

> > > Hi All,

> > >

> > > I haven't posted here in quite some time - Lianna has kept us

> > busy:-)

> > >

> > > Briefly, Lianna was given the tentative diagnosis of Psoriatic

> > > Arthritis in April and started on NSAID's which irritated her

> > stomach

> > > terribly. By July, the backs of her knees, ankles and back were

> > > hurting and she had periods of extreme fatigue. Stopped NSAID

> and

> > > began Sulfasalazine and diagnosis changed to " likely " spondy or

> > ERA.

> > > The rashes quieted and pain seemed to improve for a while.

> > >

> > > But since Christmas, left foot is on/off swollen, hands hurt

> after

> > > five minutes of coloring or bike riding, frequent rib pain,

> > headaches

> > > and again the bouts of extreme fatigue. Her AST has been

> elevated

> > > for three years with never an explanation found and now the CPK

> is

> > > slightly elevated. Rhuemy is thinking more of JDM, SLE, MCTD.

> > We've

> > > done MRI which was normal and every lab test you can imagine -

> > > thousands of dollars worth :-( and only find the AST and CPK.

> Now

> > > she wants to do a muscle biopsy with the hopes of making a firm

> > > diagnosis.

> > >

> > > This isn't a needle biopsy, but a surgical procedure - a 3 "

> > incision

> > > with a piece of muscle cut out. Of course, we're very nervous

> > about

> > > this and wonder if it will really bring an end to this diagnosis

> > > process. Has anyone else gone through the muscle biopsy for

> their

> > > child? Did it give a definite diagnosis? We really do trust

> this

> > > rhuemy - she's known to be one of the best in the country and is

> > at a

> > > large teaching hospital and actually was one of the speakers at

> > the

> > > conference last year...but a mom can't help but be nervous. This

> > > would be the third time to put Lianna under anesthesia, and she's

> > > only five! I just want this process to end and finally get the

> > right

> > > med. Thanks for any help.

> > >

> > > Jo Anne, mama to Lianna (5)

> > >

> >

>

>

>

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...