LDNers MRIs and Reports - Can we post both

[Guest guest]

What about open MRI and close MRI? I had 2 Open MRI's done and am going for another. My neuro insisted this time I go for a closed one. Is he hoping it will show more lesions than the open one and he can say "SEE you have MORE lesions now that you're on LDN?"

If that's the case, I'm going to tell him "now we have a Baseline Closed, we'll compare it to the next Closed one". I'm all ready for anything he throws at me.

----- Original Message -----

From: steve@...

low dose naltrexone

Sent: Monday, June 07, 2004 04:47

Subject: Re: [low dose naltrexone] Re: LDNers MRIs and Reports - Can we post both

On Mon, 07 Jun 2004 03:41:48 -0000, you wrote:>>I guess, if there is someone with two MRI's (before and after), that >could be worth posting.>Not really. A few hundred before and afters may show something. Thetrouble with MRI's is the positioning of the slices. MS lesions areusually very small so if a "after" slice is positioned just a tinylittle bit differently to the equivalent "before" slice the lesionwill look different and may be missing altogether.Steve

[Guest guest]

I USE TO WORK IN A DR.'S OFFICE AND DOING REFERRALS LEARNED THAT CLOSED MRI GIVES BETTER VIEWS THAN OPEN MRI'S. SOME PEOPLE HAVE TO HAVE OPEN BECAUSE OF CLAUSTROPHOBIA. DO WHAT YOU NEED TO DO. I FIND THE CLOSED AREN'T BAD, JUST KEEP YOUR EYES CLOSED BEFORE GOING IN.

[Guest guest]

On Mon, 7 Jun 2004 05:23:37 -0400, you wrote:

>What about open MRI and close MRI? I had 2 Open MRI's done and am going for

another. My neuro insisted this time I go for a closed one. Is he hoping it

will show more lesions than the open one and he can say " SEE you have MORE

lesions now that you're on LDN? "

>

>If that's the case, I'm going to tell him " now we have a Baseline Closed, we'll

compare it to the next Closed one " . I'm all ready for anything he throws at me.

>

Open & closed MRI will have similar alignment problems. Even with the

head " clamped " in place and the scanner slicing & tracking matched to

the original scan " baseline " it is still possible that the brain is in

slightly different position. If you look at a series of slices you

will sometimes see a large lesion on one slice and a tiny one in the

same position on the next slice. It's the same lesion but sliced

nearer to the edge. Now think about what will happen if the head and

brain is moved a little. A different size or no lesion at all will

appear in the same position on the same slice. Currently the only

solution is to take many slices in the same positions. Cost and time

become major issues even on modern fast scanners.

Steve

[Guest guest]

Steve my dear chap, lets not get lost in the woods. What you are

implying is that MRI's are basically useless. That's not the case.

While it is true that two MRI's taken at different times will not be

aligned similarly with reference to any particular lesion(s), they

are still reliable enough to say that you had 5 lesions before and

now you have 10. Remember, we are going after the big picture. There

are MS studies which show that the average lesion load increases by

7-10/year. By using the same hospital and radiologist, some of these

variations can be minimized.

What other option would you like to suggest, that a neurologist

would accept ?. Furthermore, all CRAB drugs have been evaluated with

MRI as one of the end points.

Aegis

>

> >

> >I guess, if there is someone with two MRI's (before and after),

that

> >could be worth posting.

> >

>

> Not really. A few hundred before and afters may show something. The

> trouble with MRI's is the positioning of the slices. MS lesions are

> usually very small so if a " after " slice is positioned just a tiny

> little bit differently to the equivalent " before " slice the lesion

> will look different and may be missing altogether.

>

> Steve

[Guest guest]

I missed some of the mri talk...but I do think they are quite useless...ad usuaslly just cause fear and anxiety....

Wouldn't it be great if they looked at the mri's and knew what they meant or what to do. I am content judging my life by how I feel and not by a scan that no one really knows anything about.

From: aegis_on_ms

low dose naltrexone

Sent: Monday, June 07, 2004 7:26 AM

Subject: [low dose naltrexone] Re: LDNers MRIs and Reports - Can we post both

Steve my dear chap, lets not get lost in the woods. What you are implying is that MRI's are basically useless. That's not the case. While it is true that two MRI's taken at different times will not be aligned similarly with reference to any particular lesion(s), they are still reliable enough to say that you had 5 lesions before and now you have 10. Remember, we are going after the big picture. There are MS studies which show that the average lesion load increases by 7-10/year. By using the same hospital and radiologist, some of these variations can be minimized. What other option would you like to suggest, that a neurologist would accept ?. Furthermore, all CRAB drugs have been evaluated with MRI as one of the end points.Aegis> > >> >I guess, if there is someone with two MRI's (before and after), that > >could be worth posting.> >> > Not really. A few hundred before and afters may show something. The> trouble with MRI's is the positioning of the slices. MS lesions are> usually very small so if a "after" slice is positioned just a tiny> little bit differently to the equivalent "before" slice the lesion> will look different and may be missing altogether.> > Steve

[Guest guest]

On Mon, 07 Jun 2004 12:26:25 -0000, you wrote:

>Steve my dear chap, lets not get lost in the woods. What you are

>implying is that MRI's are basically useless.

Not at all. I'm saying a single pair of before and after MRI can't be

depended on to show any trend - up or down.

I do know a bit about the subject. I worked on MRI when it was still

called NMR. Then, many years later I spent a long time analysing

images to see if it was possible to use my software for the prescan.

Then MS set in so I had to give up.

Steve

[Guest guest]

Sorry to have started a debate on the value of MRI's. Given they are

the defacto standard for diagnosis and evaluation of progression,

right or wrong, we need to use them if we are to present " hard "

evidence of LDN's performance. I wish there was another choice, but

this is the current standard.

I agree reports are more valuable as posts than pictures. I was

simply suggesting, based on my experiece as posted, that if it was

possible and viable to also post the pictures, that

those " skeptical " about LDN would have less reason to reject

our " evidence " . We all know reports are subject to interpretation

and spin, so perhaps Aegis' suggestion of offering to make the

pictures available would be sufficient if posting them (in addition

to the reports) is not an easily achievable task. When I read

reports on MS (or anything) I do tend to look at the source data and

often come to a different conclusion than those reported.

Best

Alan

[Guest guest]

Steve, if you get into the intricacies of MRI, you are right. Any two

MRI's do not make a trend.

The idea is that 1. if sufficient people post (before and after)

MRI's/reports, a trend will appear (i.e. no significant difference

between the before and after MRI's of patients using LDN). This is

similar to the trend we are observing on the board, that LDN works

for most but not all.

2. I DO think that repeat MRI's are useful in monitoring progression.

As I said if you have a large difference, such as 5 lesions before

and 10 after, LDN is not working for you (this principle is valid for

any comparable T1, T2, gadolinium images). Small differences, e.g. 5

versus 6 lesions may not be significant.

3. The low dose naltrexone.org site has agreed to the principle of

posting objective data. It is up to us to provide the data. Can you

suggest a better alternative to posting MRI reports, that will

achieve our goal (to provide objective evidence that LDN works)?.

A

>

> >Steve my dear chap, lets not get lost in the woods. What you are

> >implying is that MRI's are basically useless.

>

> Not at all. I'm saying a single pair of before and after MRI can't

be

> depended on to show any trend - up or down.

>

> I do know a bit about the subject. I worked on MRI when it was still

> called NMR. Then, many years later I spent a long time analysing

> images to see if it was possible to use my software for the prescan.

> Then MS set in so I had to give up.

>

> Steve

[Guest guest]

On Mon, 07 Jun 2004 15:43:38 -0000, aegis_on_ms wrote:

>3. The low dose naltrexone.org site has agreed to the principle of

>posting objective data. It is up to us to provide the data. Can you

>suggest a better alternative to posting MRI reports, that will

>achieve our goal (to provide objective evidence that LDN works)?.

The reports would need to be anonymous and standardised. The reports I

have seen are not standardised. My latest one had a page about my

sinus cavities and nasal obstructions, just a few line about MS damage

but no measurements at all. The images were still needed.

The study would require a tremendous amount of work. Who pays? LDN

would need to be a lot more expensive to raise finance from the usual

sources.

Steve

[Guest guest]

" The reports would need to be anonymous and standardised. The reports

I have seen are not standardised. "

- Standardization is only important, if we are conducting a trial

(which we definitely are not). All radiologists examine the previous

films when reporting MRI's, and even the neurologist can say if the

MRI is similar or worse than before. That's the only information we

are hoping to document. Its not perfect, but this is not a scientific

study. Standardization of reports is not achievable with our limited

resources or even the goal.

- Reporting MRI results is entirely voluntary, and can be done under

an alias or other means to prevent disclosure of identity. The onus

of maintaining anonymity should be on the person submitting the

report, since this is being submitted for posting to a public site.

This can be done best by faxing or e-mailing a typed report, so as to

delete all patient identifiers. perhaps the webmaster could just post

the reports for patient #1, 2 etc.

" My latest one had a page about my sinus cavities and nasal

obstructions, just a few line about MS damage but no measurements at

all. The images were still needed. "

- Such reports should not be posted. it looks like the MRI was done

for some other purpose than to monitor MS.

" The study would require a tremendous amount of work. Who pays? LDN

would need to be a lot more expensive to raise finance from the usual

sources. "

Again, the idea is NOT to do a study ourselves, rather to provide

some objective information which would convince researchers to look

into a trial for LDN. many MS patients have insurance which pays for

MRI's. I am not suggesting that we go and get MRI's, rather if you

already have that information, and if someone voluntarily wants to

share it, we have the possibility to do so. As you may have heard,

there is growing interest to save medical costs, perhaps the Irish

govt, perhaps some other public entity might fund a trial.

Can you suggest a better alternative to posting MRI reports ?. How

else to convince neurologists that LDN works ?. I am sure the

webmaster would not mind posting any other objective evidence, but we

need to move beyond posting anecdotes.

A

> Steve

[Guest guest]

Aegis .. I talked with Dr Bihari and he thinks that the reports on

their own, like you suggested .. (I am lost with all the back and

forth but I think you said that) .. are the best way to go. Sincere

thanks for your efforts in following through with this. Great work.

All the Best

[Guest guest]

On Mon, 07 Jun 2004 18:31:52 -0000, you wrote:

>Can you suggest a better alternative to posting MRI reports ?. How

>else to convince neurologists that LDN works ?.

I can't suggest anything better but I think there is a danger that the

results will show nothing. That becomes a negative to skeptics.

Steve

[Guest guest]

Hi

I'm afraid I have to agree with Steve - simply on the basis that my

neuro won't give me an MRI because he thinks that they don't actually

show anything. I asked him if I had an MRI before starting LDN showing

lots of active lesions, and then one 6 months to a year after the LDN

showing that they'd all gone and no new ones, then surely this must mean

that i'd not progressed, and also that I'd healed.

He said that unfortunately that's not the case. The MRI results are not

as clear cut as that. Some people without MS have these 'high

frequency' blips, and it doesn't mean that there is active MS there, not

all of these blips are bad.

Also in the natural course of the disease you may have lots of lesions

at one time and then none afterwards.

Also the amount of lesions you have do not apparently indicate the

severity of your disease. You may have lots of these shadows on the MRI

but have very mild MS, or only one or two and have a severe case.

This is one of the only things me and my Neuro disagree on. He does

acknowlege that MRIs are given a lot more weight in the states than here

in the UK. I know this all sounds like I'm being pessimistic, please

can i assure you that I'm not, I just wanted you to know what we'll be

up against with the LDN sceptics. My neuro wouldn't give much attention

to MRIs apparently showing LDN halting our disease. But then, what

other evidence can we give them ?

I still think it's a good idea, I'd be interested if any of you can find

any logic in his arguments at all ??

Ali

Leeds, UK

[Guest guest]

Ali:

There is some truth in what you say, but only some. Let Aegis

explain.

1. Once you have a diagnosis of MS, further MRI's dont help much in

the practical management of patients. This is because neurologists do

not treat MRI's, they treat patients. So the major reason neuros dont

want to do MRI's is to save costs.

2. At any particular time, symptoms may not correlate with the number

of lesions, more likely with the location of the lesion(s).

Keeping all of the above limitations in mind, MRI's have a place, in

that they monitor the NUMBER of lesions (whether symptomatic or not).

Increasing number of lesions is bad, fewer lesions are good. Let no

one tell you otherwise. All CRAB drug studies have been evaluated

with MRI's as one of the end points and the NUMBER of lesions as a

critical parameter. Now why would they that ?.

Again the call is not to go and get MRI's, but rather if you have

such, pl. post the reports anonymously. Also, in some cases the

neurologist may be willing to get one for " academic " reasons.

While some may choose to spend their time thinking why something will

not work, that's not the way how Aegis functions. So, to all the

naysayers, come up with alternatives or forever keep your piece :-)

A

> Hi

>

> I'm afraid I have to agree with Steve - simply on the basis that my

> neuro won't give me an MRI because he thinks that they don't

actually

> show anything. I asked him if I had an MRI before starting LDN

showing

> lots of active lesions, and then one 6 months to a year after the

LDN

> showing that they'd all gone and no new ones, then surely this must

mean

> that i'd not progressed, and also that I'd healed.

>

> He said that unfortunately that's not the case. The MRI results

are not

> as clear cut as that. Some people without MS have these 'high

> frequency' blips, and it doesn't mean that there is active MS

there, not

> all of these blips are bad.

>

> Also in the natural course of the disease you may have lots of

lesions

> at one time and then none afterwards.

>

> Also the amount of lesions you have do not apparently indicate the

> severity of your disease. You may have lots of these shadows on

the MRI

> but have very mild MS, or only one or two and have a severe case.

>

> This is one of the only things me and my Neuro disagree on. He does

> acknowlege that MRIs are given a lot more weight in the states than

here

> in the UK. I know this all sounds like I'm being pessimistic,

please

> can i assure you that I'm not, I just wanted you to know what we'll

be

> up against with the LDN sceptics. My neuro wouldn't give much

attention

> to MRIs apparently showing LDN halting our disease. But then, what

> other evidence can we give them ?

>

> I still think it's a good idea, I'd be interested if any of you can

find

> any logic in his arguments at all ??

>

> Ali

> Leeds, UK

[Guest guest]

Having started this particular discussion I feel badly that it

continues on.

Simply, Doctors and Drug companies use MRIs, and the reports on

same, to diagnos and evaluate MS, and prescribe related treatments.

The fact that MRIs are not perfect, nor are specific lesions

linearly related to specific symptoms, is unfortunate but true.

Some of the issues being discussed are really about how some Doctors

and Drug Companies manipulate data (in this case MRI related), using

them, and singing their praises when it suits them (diagnosing and

prescibing CRABs), and pointing out their flaws when we enter an

area they choose to aviod. Anyone with a bit of knowledge and a pen

can make almost any bunch of data seem to say almost anything.

MRI Reports are clearly the language primarly used to communucate

with by those we want to review LDN results, therefore we must use

them, especially because no one has suggested alternatives. Posting

the MRIs or otherwise making them available to interested parties

was suggested merely to add credibility to the reports, especially

given the " selective use " of this information as described above.

Thanks

Alan