Re: Specific Question & SLE BLOOD WORK

[Guest guest]

Rose I thought testing positive for SLE was testing for lupus as well and was a seperate disease from neurosarcoid. I would speak to your dr about this test result, I forget who asked the original question, but i thought this was the standard test given to check for lupus. What do i Know, just wanted to say i was confused on that with you rose. but im confused on everything these days, love you dear friend, kim

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[Guest guest]

Rose I thought testing positive for SLE was testing for lupus as well and was a seperate disease from neurosarcoid. I would speak to your dr about this test result, I forget who asked the original question, but i thought this was the standard test given to check for lupus. What do i Know, just wanted to say i was confused on that with you rose. but im confused on everything these days, love you dear friend, kim

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

Rose I thought testing positive for SLE was testing for lupus as well and was a seperate disease from neurosarcoid. I would speak to your dr about this test result, I forget who asked the original question, but i thought this was the standard test given to check for lupus. What do i Know, just wanted to say i was confused on that with you rose. but im confused on everything these days, love you dear friend, kim

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

Rose, Kim, Tracie,

Could this be a reason why I have a positive ANA?

Terri G.

>

> Rose

>

> I thought testing positive for SLE was testing for lupus as well and

was a seperate disease from neurosarcoid. I would speak to your dr about

this test result, I forget who asked the original question, but i

thought this was the standard test given to check for lupus. What do i

Know, just wanted to say i was confused on that with you rose.

>

> but im confused on everything these days,

> love you dear friend,

> kim

>

>

> ---------------------------------

> New Yahoo! Messenger with Voice. Call regular phones from your PC and

save big.

>

[Guest guest]

Kim my neuro said I didn't have lupus but I did have

neuro sarc. I'm confused too but that's me most of the

time. You're in my prayers.

grannylunatic@...

__________________________________________________

[Guest guest]

Kim my neuro said I didn't have lupus but I did have

neuro sarc. I'm confused too but that's me most of the

time. You're in my prayers.

grannylunatic@...

__________________________________________________

[Guest guest]

Kim my neuro said I didn't have lupus but I did have

neuro sarc. I'm confused too but that's me most of the

time. You're in my prayers.

grannylunatic@...

__________________________________________________

[Guest guest]

Tracie,

I have had a positive ACE and multiple positive ANA's and with all of my

symptoms they continue to say they don't know what is wrong with me.

They feel that since that cannot find my lesion(s) I cannot possibly

have a neurological illness. I have a neurogenic bladder and when I ask

why I have that they just shake their heads. Healthy people don't have

this. I also have arthritis. They keep saying that it is an emotional

problem. No one I know wants to stay at home and feel sick all day and

not have a life. I wish those idjits would get a clue and listen to

what their patients are saying; really listen.

Well, I could go on and really start a diatribe, but I am just going to

say thanks for the info and I am going to keep on keepin' on and bug the

crap out of everyone until they get it.

Thanks.

Terri G.

>

> In a message dated 3/24/06 10:50:16 AM Pacific Standard Time,

> mosaicgirl1@... writes:

>

>

> > Could this be a reason why I have a positive ANA?

>

>

> ANA is AntiNuclear Antibodies and is usually high in auto-immune

diseases.

> It does not necessarily mean you have Lupus.

>

> There are multiple forms of Lupus-- and Lupus Erythmaeos is a rash

that we

> get that is raised bumps --for me it's on my nose (I look like I have

that

> wonderful alcoholic red tip nose with a blister from being sunburned)

and under my

> breasts along the lymphatic system and hilar lymph nodes-(which we

know are

> full of sarc).

>

> One of the reasons they do these tests is to rule them out-- so that

they are

> left with sarc as the diagnosis. Remember-- we are a disease that is

> diagnosed by exclusion--when they run out of all the common stuff-

we're finally dx

> with NS.

>

> Hugs,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

I have had a positive ACE and multiple positive ANA's and with all of my

symptoms they continue to say they don't know what is wrong with me.

They feel that since that cannot find my lesion(s) I cannot possibly

have a neurological illness. I have a neurogenic bladder and when I ask

why I have that they just shake their heads. Healthy people don't have

this. I also have arthritis. They keep saying that it is an emotional

problem. No one I know wants to stay at home and feel sick all day and

not have a life. I wish those idjits would get a clue and listen to

what their patients are saying; really listen.

With NS there is many times we don't have brain lesions-- because we have Vasculitis--inflammation of the blood vessels, which swell-put pressure on the brain, and create decreased blood flow to an area--but doesn't totally cut it off.

When that specific area of the brain is effected, then whatever that part of the brain controlls- is compromised. It can happen intermetinly (sp) or it can be a permanent problem.

If the vasculitis gets severe enough, a blood clot can form by the swelling of the blood vessel, and we can end up with a stroke or TIA--Transient Ischemic Attack (mini stroke) that may or may not show on a scan.

Your MD's--like many- decide that because they cna't see it-- it must be depression. Depression becomes a component-- but secondary to some other problem-- like them not getting the diagnosis correct. . .

Hang in there-- there are answers.

Tracie

[Guest guest]

I have had a positive ACE and multiple positive ANA's and with all of my

symptoms they continue to say they don't know what is wrong with me.

They feel that since that cannot find my lesion(s) I cannot possibly

have a neurological illness. I have a neurogenic bladder and when I ask

why I have that they just shake their heads. Healthy people don't have

this. I also have arthritis. They keep saying that it is an emotional

problem. No one I know wants to stay at home and feel sick all day and

not have a life. I wish those idjits would get a clue and listen to

what their patients are saying; really listen.

With NS there is many times we don't have brain lesions-- because we have Vasculitis--inflammation of the blood vessels, which swell-put pressure on the brain, and create decreased blood flow to an area--but doesn't totally cut it off.

When that specific area of the brain is effected, then whatever that part of the brain controlls- is compromised. It can happen intermetinly (sp) or it can be a permanent problem.

If the vasculitis gets severe enough, a blood clot can form by the swelling of the blood vessel, and we can end up with a stroke or TIA--Transient Ischemic Attack (mini stroke) that may or may not show on a scan.

Your MD's--like many- decide that because they cna't see it-- it must be depression. Depression becomes a component-- but secondary to some other problem-- like them not getting the diagnosis correct. . .

Hang in there-- there are answers.

Tracie

[Guest guest]

Tracie,

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get. The pain is

terrible and it feels like I can hear fluid swooshing through my brain.

This always happens when I get the headache in the back of my head. It

wakes me up from a deep sleep and it is so painful I can't stand it. I

thought at first it might be a disc pressing on the spinal cord (I have

some bulging discs) but there is no numbness or anything like that.

Sometimes when I stand up I get the same thing and there have been times

the pressure had almost brought me to my knees. Could this be from

vasculitis? What test should I ask for? Thanks for your help.

Thanks so much.

Terri G.

>

> In a message dated 3/25/06 3:50:09 PM Pacific Standard Time,

> mosaicgirl1@... writes:

>

>

> > I have had a positive ACE and multiple positive ANA's and with all

of my

> > symptoms they continue to say they don't know what is wrong with me.

> > They feel that since that cannot find my lesion(s) I cannot possibly

> > have a neurological illness. I have a neurogenic bladder and when I

ask

> > why I have that they just shake their heads. Healthy people don't

have

> > this. I also have arthritis. They keep saying that it is an

emotional

> > problem. No one I know wants to stay at home and feel sick all day

and

> > not have a life. I wish those idjits would get a clue and listen to

> > what their patients are saying; really listen.

> >

>

> With NS there is many times we don't have brain lesions-- because we

have

> Vasculitis--inflammation of the blood vessels, which swell-put

pressure on the

> brain, and create decreased blood flow to an area--but doesn't totally

cut it

> off.

> When that specific area of the brain is effected, then whatever that

part of

> the brain controlls- is compromised. It can happen intermetinly (sp)

or it

> can be a permanent problem.

> If the vasculitis gets severe enough, a blood clot can form by the

swelling

> of the blood vessel, and we can end up with a stroke or TIA--Transient

Ischemic

> Attack (mini stroke) that may or may not show on a scan.

> Your MD's--like many- decide that because they cna't see it-- it must

be

> depression. Depression becomes a component-- but secondary to some

other

> problem-- like them not getting the diagnosis correct. . .

>

> Hang in there-- there are answers.

>

> Tracie

>

[Guest guest]

Tracie,

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get. The pain is

terrible and it feels like I can hear fluid swooshing through my brain.

This always happens when I get the headache in the back of my head. It

wakes me up from a deep sleep and it is so painful I can't stand it. I

thought at first it might be a disc pressing on the spinal cord (I have

some bulging discs) but there is no numbness or anything like that.

Sometimes when I stand up I get the same thing and there have been times

the pressure had almost brought me to my knees. Could this be from

vasculitis? What test should I ask for? Thanks for your help.

Thanks so much.

Terri G.

>

> In a message dated 3/25/06 3:50:09 PM Pacific Standard Time,

> mosaicgirl1@... writes:

>

>

> > I have had a positive ACE and multiple positive ANA's and with all

of my

> > symptoms they continue to say they don't know what is wrong with me.

> > They feel that since that cannot find my lesion(s) I cannot possibly

> > have a neurological illness. I have a neurogenic bladder and when I

ask

> > why I have that they just shake their heads. Healthy people don't

have

> > this. I also have arthritis. They keep saying that it is an

emotional

> > problem. No one I know wants to stay at home and feel sick all day

and

> > not have a life. I wish those idjits would get a clue and listen to

> > what their patients are saying; really listen.

> >

>

> With NS there is many times we don't have brain lesions-- because we

have

> Vasculitis--inflammation of the blood vessels, which swell-put

pressure on the

> brain, and create decreased blood flow to an area--but doesn't totally

cut it

> off.

> When that specific area of the brain is effected, then whatever that

part of

> the brain controlls- is compromised. It can happen intermetinly (sp)

or it

> can be a permanent problem.

> If the vasculitis gets severe enough, a blood clot can form by the

swelling

> of the blood vessel, and we can end up with a stroke or TIA--Transient

Ischemic

> Attack (mini stroke) that may or may not show on a scan.

> Your MD's--like many- decide that because they cna't see it-- it must

be

> depression. Depression becomes a component-- but secondary to some

other

> problem-- like them not getting the diagnosis correct. . .

>

> Hang in there-- there are answers.

>

> Tracie

>

[Guest guest]

Tracie,

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get. The pain is

terrible and it feels like I can hear fluid swooshing through my brain.

This always happens when I get the headache in the back of my head. It

wakes me up from a deep sleep and it is so painful I can't stand it. I

thought at first it might be a disc pressing on the spinal cord (I have

some bulging discs) but there is no numbness or anything like that.

Sometimes when I stand up I get the same thing and there have been times

the pressure had almost brought me to my knees. Could this be from

vasculitis? What test should I ask for? Thanks for your help.

Thanks so much.

Terri G.

>

> In a message dated 3/25/06 3:50:09 PM Pacific Standard Time,

> mosaicgirl1@... writes:

>

>

> > I have had a positive ACE and multiple positive ANA's and with all

of my

> > symptoms they continue to say they don't know what is wrong with me.

> > They feel that since that cannot find my lesion(s) I cannot possibly

> > have a neurological illness. I have a neurogenic bladder and when I

ask

> > why I have that they just shake their heads. Healthy people don't

have

> > this. I also have arthritis. They keep saying that it is an

emotional

> > problem. No one I know wants to stay at home and feel sick all day

and

> > not have a life. I wish those idjits would get a clue and listen to

> > what their patients are saying; really listen.

> >

>

> With NS there is many times we don't have brain lesions-- because we

have

> Vasculitis--inflammation of the blood vessels, which swell-put

pressure on the

> brain, and create decreased blood flow to an area--but doesn't totally

cut it

> off.

> When that specific area of the brain is effected, then whatever that

part of

> the brain controlls- is compromised. It can happen intermetinly (sp)

or it

> can be a permanent problem.

> If the vasculitis gets severe enough, a blood clot can form by the

swelling

> of the blood vessel, and we can end up with a stroke or TIA--Transient

Ischemic

> Attack (mini stroke) that may or may not show on a scan.

> Your MD's--like many- decide that because they cna't see it-- it must

be

> depression. Depression becomes a component-- but secondary to some

other

> problem-- like them not getting the diagnosis correct. . .

>

> Hang in there-- there are answers.

>

> Tracie

>

[Guest guest]

Tracie,

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get. The pain is

terrible and it feels like I can hear fluid swooshing through my brain.

This always happens when I get the headache in the back of my head. It

wakes me up from a deep sleep and it is so painful I can't stand it. I

thought at first it might be a disc pressing on the spinal cord (I have

some bulging discs) but there is no numbness or anything like that.

Sometimes when I stand up I get the same thing and there have been times

the pressure had almost brought me to my knees. Could this be from

vasculitis? What test should I ask for? Thanks for your help.

Thanks so much.

Terri G.

>

> In a message dated 3/25/06 3:50:09 PM Pacific Standard Time,

> mosaicgirl1@... writes:

>

>

> > I have had a positive ACE and multiple positive ANA's and with all

of my

> > symptoms they continue to say they don't know what is wrong with me.

> > They feel that since that cannot find my lesion(s) I cannot possibly

> > have a neurological illness. I have a neurogenic bladder and when I

ask

> > why I have that they just shake their heads. Healthy people don't

have

> > this. I also have arthritis. They keep saying that it is an

emotional

> > problem. No one I know wants to stay at home and feel sick all day

and

> > not have a life. I wish those idjits would get a clue and listen to

> > what their patients are saying; really listen.

> >

>

> With NS there is many times we don't have brain lesions-- because we

have

> Vasculitis--inflammation of the blood vessels, which swell-put

pressure on the

> brain, and create decreased blood flow to an area--but doesn't totally

cut it

> off.

> When that specific area of the brain is effected, then whatever that

part of

> the brain controlls- is compromised. It can happen intermetinly (sp)

or it

> can be a permanent problem.

> If the vasculitis gets severe enough, a blood clot can form by the

swelling

> of the blood vessel, and we can end up with a stroke or TIA--Transient

Ischemic

> Attack (mini stroke) that may or may not show on a scan.

> Your MD's--like many- decide that because they cna't see it-- it must

be

> depression. Depression becomes a component-- but secondary to some

other

> problem-- like them not getting the diagnosis correct. . .

>

> Hang in there-- there are answers.

>

> Tracie

>

[Guest guest]

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get.

[Guest guest]

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get.

[Guest guest]

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get.

[Guest guest]

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get.

Yes, there are some--although none are totally diagnostic without other supporting symptoms.

Here is a great website that gives you some idea of what vasculitis is and can do.

http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/VasculitisLong.html

ANCA tests, Angiograms with/without dye, can all be helpful.

The headaches and swoosy head can be sarc related. It really needs to be figured out--but with the high ACE level in your spinal fluid, I'd think it was related. Have you tried to track what you're eating prior to these headaches coming on? I know I can trigger migraines with chocolate that has been thinned with coffee (like the chocolate syrup at the ice cream store). That'll get me good.

What I found interesting in the site listed above is that Wegeners Granulomatous is listed, and sarc may be a form of this disease.

Do remember that I'm just one of you-- I'm not a doctor, but I've lived with this disease for 17 years now-- and I'm still looking for the answers too.

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get.

Yes, there are some--although none are totally diagnostic without other supporting symptoms.

Here is a great website that gives you some idea of what vasculitis is and can do.

http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/VasculitisLong.html

ANCA tests, Angiograms with/without dye, can all be helpful.

The headaches and swoosy head can be sarc related. It really needs to be figured out--but with the high ACE level in your spinal fluid, I'd think it was related. Have you tried to track what you're eating prior to these headaches coming on? I know I can trigger migraines with chocolate that has been thinned with coffee (like the chocolate syrup at the ice cream store). That'll get me good.

What I found interesting in the site listed above is that Wegeners Granulomatous is listed, and sarc may be a form of this disease.

Do remember that I'm just one of you-- I'm not a doctor, but I've lived with this disease for 17 years now-- and I'm still looking for the answers too.

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

Are there any tests for vasculitis? I have an appointment soon with my

PCP and he will pretty much order anything I want. If it wasn't for me

asking for the chest CT we would not have known about the hilar nodes.

Would vasculitis cause these really weird headaches I get.

Yes, there are some--although none are totally diagnostic without other supporting symptoms.

Here is a great website that gives you some idea of what vasculitis is and can do.

http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/VasculitisLong.html

ANCA tests, Angiograms with/without dye, can all be helpful.

The headaches and swoosy head can be sarc related. It really needs to be figured out--but with the high ACE level in your spinal fluid, I'd think it was related. Have you tried to track what you're eating prior to these headaches coming on? I know I can trigger migraines with chocolate that has been thinned with coffee (like the chocolate syrup at the ice cream store). That'll get me good.

What I found interesting in the site listed above is that Wegeners Granulomatous is listed, and sarc may be a form of this disease.

Do remember that I'm just one of you-- I'm not a doctor, but I've lived with this disease for 17 years now-- and I'm still looking for the answers too.

Blessings,

Tracie

NS Co-owner/moderator