Fibro,Lupus,Chronic Fatigue,MS was Re: [Unschooling-dotcom]
Darryl Klement
HSMOTGO@... wrote:
wide. MS lesions found in autopsies can be microscopic.
Lesions on an MRI are ONLY an indicator of the presence of the lesions
themselves not of MS. There are many reasons lesions could appear such
as head trauma.
By tracking over time MRIs indicating increases of lesions or an
enlargement of a lesion can be indicitive of MS.
MS is most often diagnosed using a combination of nerological tests and
tracking symptoms.
Major indicators such as positive spinal tap, positive evoked
potentials, Optical Neuritis and unexplained disrubances in
nuerological related sensations (patches of burning skin where nobody
can feel any heat on your skin, the sensation of ants crawling all over
a part of you etc.) are typically used to diagnosed when there are an
absence of visible lesions in an MRI.
Only an autopsy can tell for sure if you have MS.
And it is not unusual for a person with one auto immune disorder to
develop one or two more....OH JOY :-(
Buzz....who has MS and has done more research on the subject than she
cares to remember.
>MS is very often dx without an MRI. An MRI can only find lesions 2 mm
> From: HSMOTGO@...
>
> In a message dated 3/28/00 7:09:22 AM Eastern Standard Time,
> heatherhada@... writes:
>
> << I went to the
> doctor last week with many many symptoms and he told me it was probably just
> mild fibromylgia (would hate to see severe) but ran some test anyway. >>
> Heather, if you have a group of symptoms, it sounds like Chronic Fatigue
> Syndrome, with fibromyalgia going with it. My sister has this, and it is
> very close to MS and I believe that my sister says that only way they can dx
> MS is with a brain scan. At any rate, if you want to email me privately, I
> can get you in touch with her regarding her symptoms.
> Teresa
wide. MS lesions found in autopsies can be microscopic.
Lesions on an MRI are ONLY an indicator of the presence of the lesions
themselves not of MS. There are many reasons lesions could appear such
as head trauma.
By tracking over time MRIs indicating increases of lesions or an
enlargement of a lesion can be indicitive of MS.
MS is most often diagnosed using a combination of nerological tests and
tracking symptoms.
Major indicators such as positive spinal tap, positive evoked
potentials, Optical Neuritis and unexplained disrubances in
nuerological related sensations (patches of burning skin where nobody
can feel any heat on your skin, the sensation of ants crawling all over
a part of you etc.) are typically used to diagnosed when there are an
absence of visible lesions in an MRI.
Only an autopsy can tell for sure if you have MS.
And it is not unusual for a person with one auto immune disorder to
develop one or two more....OH JOY :-(
Buzz....who has MS and has done more research on the subject than she
cares to remember.
[email protected]
When my sister went to her neurologist, who does not believe in Chronic
Fatigue Syndrome, he told her that the brain scan was the definitive dx for
MS, which he was sure she had. When she told me this, I reminded her that
she had been thru all that several years ago, when they were trying to dx her
to begin with, she had forgotten, another symptom in the syndrome. So, I am
merely passing on from the neurologist concerning the dx of MS.
Teresa
Fatigue Syndrome, he told her that the brain scan was the definitive dx for
MS, which he was sure she had. When she told me this, I reminded her that
she had been thru all that several years ago, when they were trying to dx her
to begin with, she had forgotten, another symptom in the syndrome. So, I am
merely passing on from the neurologist concerning the dx of MS.
Teresa
Darryl Klement
HSMOTGO@... wrote:
accounts of the same balderdash being spewed from neurologists to their
patients, from many many MS sufferers on the support newsgroups
The problem with most neurologists is that MS is not their
specialty.Very few Neuros are up to date on MS.....there is no money to
be made treating an MS patient.Drug companies put little effort into
cure research because there is toooo much money to be made on treatment
drugs.
It's pretty much a health *maintenance* diseases like CFS or Arthritis.
Many Neuros tell this myth about MRIs to patients to shut them up. You
wouldn't believe how many patients are labled *all in the head* because
a Neuro won't consider MS until lesions appear in multiples in an MRI.
Did your sister see her MRI? If she didn't she should and get the
previous ones and have them compared by another Neuro.
We've had many, many people on the MS support newsgroup take their
*films* of their MRIs and run to another Neuro for a second opinion to
find out that the First Neuros opinion was completely wrong.
My first neuro told me everything was all right. Nothing showed on the
MRI so it couldn't be MS.
I asked for a second opinion after 2 yrs of grief from this guy. The
second opinion fellow said the neurological tests and the problems with
my eye post Optic Neuritis were more than enough tohave diagnosed MS two
yrs previous to my visit to him.
He sent me to a specialist at the MS clinic here in town at the McMaster
University Medical Centre who thought the same as the second Neuro and
was pleased to say I had no lesions but he truly felt I had MS and told
me to my face that I have MS.
He was convinced enough to give me a Rx for a drug to help with
fatigue....a drug that only works on fatigue in MS patients....it works
for me so there is another chalk mark to say MS (unfortunately)
When two out of three Neuros say you have it and one is a well known
specialist....then you have it even without the MRI's say so.
If this Neuro of hers doesn't believe in CFS she should get another
opinion. CFS has been considered a true and real disease for 10 yrs now.
Is your sister on line? There should be a support newsgroup for CFS.
These support newsgroups are a great place to get info and support,
neuro recommendations for your area etc. and you don't have to be
diagnosed to participate only interested in the disease.
I've found my alt.support.mult-sclerosis newsgroup a real help, with
great people willing to offer support and suggestions.
I hope your sister's life gets easier.
Buzz
------------------------------------------------------------------------
>Teresa, I didn't mean to offend you and I hope I didn't. I've heard
> From: HSMOTGO@...
>
> When my sister went to her neurologist, who does not believe in Chronic
> Fatigue Syndrome, he told her that the brain scan was the definitive dx for
> MS, which he was sure she had. When she told me this, I reminded her that
> she had been thru all that several years ago, when they were trying to dx her
> to begin with, she had forgotten, another symptom in the syndrome. So, I am
> merely passing on from the neurologist concerning the dx of MS.
> Teresa
accounts of the same balderdash being spewed from neurologists to their
patients, from many many MS sufferers on the support newsgroups
The problem with most neurologists is that MS is not their
specialty.Very few Neuros are up to date on MS.....there is no money to
be made treating an MS patient.Drug companies put little effort into
cure research because there is toooo much money to be made on treatment
drugs.
It's pretty much a health *maintenance* diseases like CFS or Arthritis.
Many Neuros tell this myth about MRIs to patients to shut them up. You
wouldn't believe how many patients are labled *all in the head* because
a Neuro won't consider MS until lesions appear in multiples in an MRI.
Did your sister see her MRI? If she didn't she should and get the
previous ones and have them compared by another Neuro.
We've had many, many people on the MS support newsgroup take their
*films* of their MRIs and run to another Neuro for a second opinion to
find out that the First Neuros opinion was completely wrong.
My first neuro told me everything was all right. Nothing showed on the
MRI so it couldn't be MS.
I asked for a second opinion after 2 yrs of grief from this guy. The
second opinion fellow said the neurological tests and the problems with
my eye post Optic Neuritis were more than enough tohave diagnosed MS two
yrs previous to my visit to him.
He sent me to a specialist at the MS clinic here in town at the McMaster
University Medical Centre who thought the same as the second Neuro and
was pleased to say I had no lesions but he truly felt I had MS and told
me to my face that I have MS.
He was convinced enough to give me a Rx for a drug to help with
fatigue....a drug that only works on fatigue in MS patients....it works
for me so there is another chalk mark to say MS (unfortunately)
When two out of three Neuros say you have it and one is a well known
specialist....then you have it even without the MRI's say so.
If this Neuro of hers doesn't believe in CFS she should get another
opinion. CFS has been considered a true and real disease for 10 yrs now.
Is your sister on line? There should be a support newsgroup for CFS.
These support newsgroups are a great place to get info and support,
neuro recommendations for your area etc. and you don't have to be
diagnosed to participate only interested in the disease.
I've found my alt.support.mult-sclerosis newsgroup a real help, with
great people willing to offer support and suggestions.
I hope your sister's life gets easier.
Buzz
------------------------------------------------------------------------
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susan
heatherhada@... wrote:
i agree about the support. i was on list a list for still's disease and everyone
was really nice but most people didn't have kids and those who did didn't hs (or
if they did they kept it to themselves) so its nice to have more then one thing
in common but more importantly its nice to speak about being chronically ill in
the context of the great joy and choice ( since being ill is not:) of
unschooling. i like this context <g> and really appreciate the patience of those
who are fortunate not to have this in their lives.
thanks
susan
austin,tx
'unity through diversity'
> I'd like to thank everyone here who took thehi,
> time to answer my original post and I'm sorry to bring this issue here to the
> unschooling board, but so far this has been my best support system. So thanks
> again.
>
i agree about the support. i was on list a list for still's disease and everyone
was really nice but most people didn't have kids and those who did didn't hs (or
if they did they kept it to themselves) so its nice to have more then one thing
in common but more importantly its nice to speak about being chronically ill in
the context of the great joy and choice ( since being ill is not:) of
unschooling. i like this context <g> and really appreciate the patience of those
who are fortunate not to have this in their lives.
thanks
susan
austin,tx
'unity through diversity'
Darryl Klement
FreeSchool@... wrote:
MS as a specialty.
[snip] >>
if there is a progression in number or size of plaque(s). This is why it
can take yrs to get dx. It has to be tracked over a few yrs to see a
pattern of attacks and an increase or enlargement of plaque(s).
this may hold more weight than one from a GP.
At least you may be able to rule out MS. Have your eyes been checked by
an Opthamologist? They can tell if you've had episodes of Optic Neuritis
which is difficult for even a neurologist to see.
are they kidding? Plaques are obvious with today's MRI machines. The
plaques that do show up are considered large because they are 2 mm or
larger to have shown up in the first place.
I will tell you this though ... the majority of auto immune disorder
patients I've had personal contact with have had to fight like hell to
be treated decently and honestly.
An informed patient has to tread carefully so as not to bruise doctors'
egos and get the treatment they deserve!!!!!!
It's something one can live with if one has too. Very few MS patients
are non ambulatory.....80% walk into their doctors for their regular
appts and of the 20% that don't, the majority of them only have to use a
wheel chair occasionally and just have to use crutches or a cane for the
most part.
Buzz
------------------------------------------------------------------------
>I think I phrased that rather awkwardly.....very few Neurologists have
> In a message dated 3/30/00 6:30:53 AM Central Standard Time,
> klement@... writes:
>
> <<
> The problem with most neurologists is that MS is not their
> specialty.
MS as a specialty.
[snip] >>
>The plaques should be investigated but you can't tell from a single MRI
> I found this to be very curious. When I first became ill in 1993, I was very
> weak and had trouble even washing off the kitchen table. After weeks of
> feeling this ill, I went to see my family doctor. He thought that I had a
> bone spur in my shoulder so he sent me to a neurosurgeon. The neurosurgeon
> did and MRI and then told me that I had MS. He pointed out "plaques" on the
> MRI and said that I would have to go see a neurologist, since his specialty
> was surgery.
if there is a progression in number or size of plaque(s). This is why it
can take yrs to get dx. It has to be tracked over a few yrs to see a
pattern of attacks and an increase or enlargement of plaque(s).
>Well, it took weeks to get my appointment, and by the time IUnfortunately this is typical.
> did, I was feeling almost back to normal (except for the numbness and
> tingling in my arms). The neurologist refused to take the neurosurgeons word
> for it and said that I had diagnosed myself! He said that he could see
> nothing wrong with me and that I was healthy as a horse. He did say that my
> blood pressure was extremely, extremely low (which probably, according to
> him, cause the dizziness, weakness and other symptoms) so he said I should go
> home and start eating alot of salt! Well, I have tried (since new symptoms
> have come and gone in the last few years---vision, problems with my legs,
> pain and many others that I would really rather not go into) to see other
> neurologists. They always refuse to do any more MRIs or any other tests, and
> instead hinted that all of this is in my head.
>However, with all the pain ICould you get a referral to an MS specialist from the Rheumatologist?
> had (and some other symptoms that cannot be faked), I knew this wasn't so.
> Finally a reumatologist said that since my killer T-cells were extremely low
> and I had all the "pain points" that he thought I had CFIDS and Fibromyalgia.
> That has become my "official" diagnosis, even though a couple of my symptoms
> don't match the criteria---and basically has my doctor very concerned.
this may hold more weight than one from a GP.
At least you may be able to rule out MS. Have your eyes been checked by
an Opthamologist? They can tell if you've had episodes of Optic Neuritis
which is difficult for even a neurologist to see.
> Anyway, I have tried everything on my own, change in diet, natural medicineOh what crap...if they don't track and the neurosurgeon saw plaques who
> and herbs, but nothing has helped. Your info on the MRIs has been the first
> I heard. I have been told that my first MRI was "nonconclusive" (they said
> that they could see "something" but weren't convinced that is was plaques like the neurosurgeon said) and that they could see no reason for another MRI, even though it has been a few years. They also said that since I didn't
> have a conslusive MRI that I didn't have MS and there was no need to be
> retested.
are they kidding? Plaques are obvious with today's MRI machines. The
plaques that do show up are considered large because they are 2 mm or
larger to have shown up in the first place.
I will tell you this though ... the majority of auto immune disorder
patients I've had personal contact with have had to fight like hell to
be treated decently and honestly.
An informed patient has to tread carefully so as not to bruise doctors'
egos and get the treatment they deserve!!!!!!
>Therefore, I grasped at the diagnosis of CFIDS andMS isn't a life threatening disease just a pain in the a** disease.
> fibromyalgia----at least then I have a diagnosis!!-----and I have quit going
> to doctors for a diagnosis. Now the only doctor that I see is my family
> doctor---who I like very much-----and he treats me for the pain and other
> symtoms. I figure that if it is something like MS, I will have to wait until
> it is so obvious that it hits them over the head! In the meantime, I will
> just try to help myself as much as possible!
> Tammy
It's something one can live with if one has too. Very few MS patients
are non ambulatory.....80% walk into their doctors for their regular
appts and of the 20% that don't, the majority of them only have to use a
wheel chair occasionally and just have to use crutches or a cane for the
most part.
Buzz
------------------------------------------------------------------------
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