Re: Re: OT ALS does represent with Scarring/plaques/sclerosis

[Guest guest]

OK, we will have to agree to disagree. As I said, I don't know anyone

with ALS who has plaques and my understanding is that if they had

PLAQUES the diagnosis would not be ALS, but probably MS. Your challenge

still exists - find me someone with actual plaques or scarring who has a

confirmed ALS diagnosis and I will eat my words.

Your reference

http://www.neuro.wustl.edu/neuromuscular/spinal/als.htm#alsmri confirms

what I said. Those MRIs don't show scarring or plaques, they show

evidence of hyper intense signalling which is exactly what I said my own

MRI showed. My MRI was to see whether I had MS and the very first thing

the neuro said to me was " It isn't MS as you have no plaques. " He then

went on to say " However, there is an area of abnormal signalling and on

that basis we believe you have PLS. "

ALS was identified in 1869 by Jean- Charcot who had also

previously identified MS and PLS (Primary Lateral SCLEROSIS). One of

the identifiers I found for PLS, despite it having the word SCLEROSIS in

its name, is " Absence of lesions on MRI similar to those seen in MS. "

ALS and PLS are often considered to be variations on the same disease

and the statement re absence of lesions applies equally to ALS. ALS was

not named after anyone, unless their surname is Sclerosis. Some 70

years after Charcot identified it Lou Gehrig was diagnosed with it, so

it also became known as Lou Gehrig's disease but its proper name is

still ALS.

Maybe it comes down to semantics. Maybe some people refer to areas of

abnormal signalling as plaques as well as referring to demyelinated

areas as plaques as occurs in MS. However, my neurologist didn't and I

repeat again, nobody of the hundred or so PALS (people with ALS) I have

communicated with in the almost 13 years since my own PLS diagnosis has

any evidence of lesions/plaques/scarring and my understanding is that if

they did they would not get an ALS diagnosis. Find me one who does please.

wrote:

> Go to http://www.neuro.wustl.edu/neuromuscular/spinal/als.htm#alsmri

> Scroll down to bottom of page. You will see mri's of the medulla,

> pons, midbrain and Internal capsule area's of the brain in an als

> patient. Not all show positive mri's but some do.

>

> A very good friend of mine has ALS and told me about the scarring. I

> wanted to learn more so have looked some things up. If there were no

> plaques or scarring with ALS how do you explain the word sclerosis in

> its name? I tried to explain best I could before that sclerosis

> means scarring. Plaques also mean scarring. Multiple sclerosis

> means multiple scarring. ALS means Amyotrophic Lateral Sclerosis.

> Which means: A-myo-trophic comes from the Greek language. " A " means

> no or negative. " Myo " refers to muscle, and " Trophic " means

> nourishment--- " No muscle nourishment. " When a muscle has no

> nourishment, it " atrophies " or wastes away. " Lateral " identifies the

> areas in a person's spinal cord where portions of the nerve cells

> that signal and control the muscles are located. As this area

> degenerates it leads to scarring or hardening ( " sclerosis " ) in the

> region.

> When these motor neurons degenerate, they can no longer send impulses

> to the muscle fibers that normally result in muscle movement.

>

> The diagnoses has been ms for alot of people with ALS.

>

>

> There is also a new form of mri imaging out called mrs. It provides

> a clearer snapshot of brain chemistry in ALS patients. Thus

> providing a better diagnostic tool. Also ALS has been confused with

> Lymes disease like ms has. People with ALS can also have a postive

> spinal tap showing high glutamate levels.

>

> What guy that did the same for ms years ago? ALS was named after a

> baseball player called Lou Gehrig who came down with the disease.

[Guest guest]

,

OK, thanks. You are the first person I remember knowing of to have had

plaques with a diagnosis of ALS. Nobody else I can remember in almost

13 years with ALS/PLS has had anything show on their MRIs except for a

few like me who had specific areas (corticospinal tract) of

hypersignalling as shown in the link that Louise gave. I would be

interested to know however if your plaques were actually areas of

hypersignalling as distinct from MS type plaques.

Cheers,

PS How long have you been waiting to be able to say " Geez, Louise! " ? :-)

wrote:

> ,

>

> Geez, Louise! I should have been reading the posts more often

> lately! , the information you posted regarding ALS was very

> informative and appreciated...and correct, based on my extensive

> reading of ALS literature.

>

> In fact I have been diagnosed with ALS (MND diagnosis 11/04, ALS

> diagnosis 04/05. In the process of diagnosing me, of course MS had

> to be ruled out due to the similarity of symptoms in the earlier

> stages. My MRI did in fact show plaques, however, my neurologist

> said they would be unrelated to a diagnosis of MS. So, due to my

> progression etc., I have been diagnosed with ALS by an extremely

> competent neurologist who specializes in MS. The findings were

> reviewed and concurred with by the leading neuro specializing in ALS

> in my area. I have not asked the members of my ALS support group

> whether or not they also had plaques, but I can be sure to do so at

> our next meeting.

>

> Incidentally, I pick up my prescription for ldn tomorrow, so my

> first dose will be tomorrow night. My neuro felt that ldn may be

> helpful, and certainly wouldn't hurt. He is pro ldn for MS and will

> not prescribe the CRAB's to his MS patients due to his feelings

> regarding their toxicity. I have been started on a dose of 3.0.

>

> You are both welcome to agree to disagree, however in fact I do have

> plaques (non-MS related) and ALS. I do hope this clears it up...and

> didn't have to go find anyone--I've been a member here for a

> few months.

>

>

[Guest guest]

Grab hold of him and don't let him go!! :-)

LDN is certainly helping a few people I know with ALS and myself with PLS.

wrote:

> Incidentally, I pick up my prescription for ldn tomorrow, so my

> first dose will be tomorrow night. My neuro felt that ldn may be

> helpful, and certainly wouldn't hurt. He is pro ldn for MS and will

> not prescribe the CRAB's to his MS patients due to his feelings

> regarding their toxicity. I have been started on a dose of 3.0.