Re: Re: MRI has me concerned

January 7, 2009

Tony, Does that mean you have to do another MRI? Well again, only worry when you have to. I had an MRI with and without contrast and it still didn't show anything, but I still can't lift my legs up off a chair, or up at all if I'm lying down, I can't slide up or down on a table, and I can't

walk very far at all. So my doc told me where he thought the lesions where from my symptoms, and confirmed my need for Remicade, so sometimes we still don't get answers with test. ALL my tests except the biopsy which was what dx Sarcoidosis, have all been neg. but

my body says different, we just go by the body. Good luck, and blessings to you, Marla

Thank you Marla. You're always the voice of reason and a comfort

during times like these. Finally spoke with the doc yesterday. He

didn't have a clue what was going on but, to his credit, he made some

calls. Turns out that the radiologist thought my creatinine was too

high to handle the contrast. Last lab shows CREA at 1.1 with the

normal range of 1.2 max for me. My doc wasn't concerned about the

number...the `normal range' doesn't consider muscle mass. I've been

in the gym for years. My doc has seen me and knows the higher value

is more than likely attributed to my mass and is normal for me. The

radiologist saw me laying down in a tube, covered by a blanket.

Better safe than sorry I suppose...just wished they would have

included me in the discussion.

Aside from that, Doc said the MRI summary report shows my CREA at 1.4

which is different from the labs he has...could be a typo in the

report. The images without contrast were unremarkable...no surprise

there. To my way of thinking, the labs should have been reviewed up

front. An MRI without contrast for NS is basically

worthless...sadly, just a waste of time and money. Lessons learned.

Next time I'll ask to wait until the blood test come back before they

schedule a study.

Peace, Tony

>

> > Been away for a bit, trying to live life without thinking too

much

> > about this thing called neuro sarc. Not that that's worked. Some

> > new symptoms over the past year, enough that the doc put me on

> > neurontin for the shooters and order an MRI of the head and c-

spine.

> >

> > I went for my MRI, ordered with and without contrast, yesterday.

The

> > imaging dept did the scan without contrast then stopped. The scans

> > without contrast took almost 90 minutes which seemed awful long as

> > the entire process is typically complete in this amount of time. I

> > held very still and doubt movement was an issue. I asked about the

> > rest of the study and was told by the technician that the

radiologist

> > reviewed the scans and determined that they had enough

information so

> > contrast was not necessary. That is all the information they would

> > give me other than to say `contact your doctor'. I've had more

MRIs

> > than I care to remember and have never had them stop half way.

> > Unnerving to say the least. Still haven't heard back from the

> > neuro.

> >

> > Lots of questions…having worked in healthcare for many years, I

know

> > enough that the radiologist can not over ride an order without the

> > attending's consent. Aside from cheesing off the attending,

> > deviating from an order opens up a can of worms liability wise.

> > Typically, studies are only stopped due to technical difficulties,

> > patient issues (i.e. trouble injecting the contrast) or sufficient

> > data available for a dx. I ruled out the first two which leaves

the

> > later, hence a lot of nail biting on my part. I hope that I'm

> > overreacting. Has this ever happened to anyone else? Also, does

> > anyone have any links relating to the use of MRI studies and

> > neurosarc? I've done a bunch of searches but basically came up

> > empty. Any thoughts / help would be sincerely appreciated.

> >

> > Peace, Tony

> >

>

> --

> Marla Bramer

> Independent Beauty

> Consultant Kay

> mbramer@...

> www.marykay.com/mbramer

>

> May the Lord bless you and keep you,

> May the Lord make his face to shine upon

> You,

> And be gracious to you;

> May the Lord lift up his favor upon you and give you his peace.

> (Numbers 6:24-26)

>

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

January 8, 2009

Hi,

Did they do a lumbar puncture as well?

Rick

Thank you Marla. You're always the voice of reason and a comfort during times like these. Finally spoke with the doc yesterday. He didn't have a clue what was going on but, to his credit, he made some calls. Turns out that the radiologist thought my creatinine was too high to handle the contrast. Last lab shows CREA at 1.1 with the normal range of 1.2 max for me. My doc wasn't concerned about the number...the `normal range' doesn't consider muscle mass. I've been in the gym for years. My doc has seen me and knows the higher value is more than likely attributed to my mass and is normal for me. The radiologist saw me laying down in a tube, covered by a blanket. Better safe than sorry I suppose...just wished they would have included me in the discussion.Aside from that, Doc said the MRI summary report shows my CREA at 1.4 which is different from the labs he has...could be a typo in the report.

The images without contrast were unremarkable. ..no surprise there. To my way of thinking, the labs should have been reviewed up front. An MRI without contrast for NS is basically worthless... sadly, just a waste of time and money. Lessons learned. Next time I'll ask to wait until the blood test come back before they schedule a study.Peace, Tony > > > Been away for a bit, trying to live life without thinking too much> > about this thing called neuro sarc. Not that that's worked. Some> > new symptoms over the past year, enough that the doc put me on> > neurontin for the shooters and order an MRI of the head and c-spine.> >> > I went for my MRI, ordered with and without contrast, yesterday. The> > imaging dept did the scan without contrast then stopped. The scans> > without contrast took almost 90 minutes which seemed awful long as> > the entire process is typically complete in this amount of time. I> > held very still and doubt movement was an issue. I asked about the> > rest of the study and was told by the technician that the radiologist> > reviewed the scans and determined that they had enough

information so> > contrast was not necessary. That is all the information they would> > give me other than to say `contact your doctor'. I've had more MRIs> > than I care to remember and have never had them stop half way.> > Unnerving to say the least. Still haven't heard back from the> > neuro.> >> > Lots of questions…having worked in healthcare for many years, I know> > enough that the radiologist can not over ride an order without the> > attending's consent. Aside from cheesing off the attending,> > deviating from an order opens up a can of worms liability wise.> > Typically, studies are only stopped due to technical difficulties,> > patient issues (i.e. trouble injecting the contrast) or sufficient> > data available for a dx. I ruled out the first two which leaves the> > later, hence a lot of

nail biting on my part. I hope that I'm> > overreacting. Has this ever happened to anyone else? Also, does> > anyone have any links relating to the use of MRI studies and> > neurosarc? I've done a bunch of searches but basically came up> > empty. Any thoughts / help would be sincerely appreciated.> >> > Peace, Tony> >> > > >> > >

> -- > Marla Bramer> Independent Beauty> Consultant Kay> mbramer@... > www.marykay. com/mbramer> > May the Lord bless you and keep you,> May the Lord make his face to shine upon> You,> And be gracious to you;> May the Lord lift up his favor upon you and give you his peace.> (Numbers 6:24-26)>-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers

6:24-26)

January 8, 2009

I've been on remicade for a couple of months and the only time I felt no pain was after the 1st treatment. My dr. said it stills helps other aspects of my condition, like preventing the sarcoid from spreading. Any concerns or questions you have, don't be afraid to ask your dr.

If his/her answer is not satisfactory to you, find a second opinion.

GOD Bless.

Thank you Marla. You're always the voice of reason and a comfort during times like these. Finally spoke with the doc yesterday. He didn't have a clue what was going on but, to his credit, he made some calls. Turns out that the radiologist thought my creatinine was too high to handle the contrast. Last lab shows CREA at 1.1 with the normal range of 1.2 max for me. My doc wasn't concerned about the number...the `normal range' doesn't consider muscle mass. I've been in the gym for years. My doc has seen me and knows the higher value is more than likely attributed to my mass and is normal for me. The radiologist saw me laying down in a tube, covered by a blanket. Better safe than sorry I suppose...just wished they would have included me in the discussion.Aside from that, Doc said the MRI summary report shows my CREA at 1.4 which is different from the labs he has...could be a typo in the report.

The images without contrast were unremarkable. ..no surprise there. To my way of thinking, the labs should have been reviewed up front. An MRI without contrast for NS is basically worthless... sadly, just a waste of time and money. Lessons learned. Next time I'll ask to wait until the blood test come back before they schedule a study.Peace, Tony > > > Been away for a bit, trying to live life without thinking too much> > about this thing called neuro sarc. Not that that's worked. Some> > new symptoms over the past year, enough that the doc put me on> > neurontin for the shooters and order an MRI of the head and c-spine.> >> > I went for my MRI, ordered with and without contrast, yesterday. The> > imaging dept did the scan without contrast then stopped. The scans> > without contrast took almost 90 minutes which seemed awful long as> > the entire process is typically complete in this amount of time. I> > held very still and doubt movement was an issue. I asked about the> > rest of the study and was told by the technician that the radiologist> > reviewed the scans and determined that they had enough

information so> > contrast was not necessary. That is all the information they would> > give me other than to say `contact your doctor'. I've had more MRIs> > than I care to remember and have never had them stop half way.> > Unnerving to say the least.. Still haven't heard back from the> > neuro.> >> > Lots of questions…having worked in healthcare for many years, I know> > enough that the radiologist can not over ride an order without the> > attending's consent. Aside from cheesing off the attending,> > deviating from an order opens up a can of worms liability wise.> > Typically, studies are only stopped due to technical difficulties,> > patient issues (i.e. trouble injecting the contrast) or sufficient> > data available for a dx. I ruled out the first two which leaves the> > later, hence a lot of

nail biting on my part. I hope that I'm> > overreacting. Has this ever happened to anyone else? Also, does> > anyone have any links relating to the use of MRI studies and> > neurosarc? I've done a bunch of searches but basically came up> > empty. Any thoughts / help would be sincerely appreciated.> >> > Peace, Tony> >> > > >> > >

> -- > Marla Bramer> Independent Beauty> Consultant Kay> mbramer@... > www.marykay. com/mbramer> > May the Lord bless you and keep you,> May the Lord make his face to shine upon> You,> And be gracious to you;> May the Lord lift up his favor upon you and give you his peace.> (Numbers 6:24-26)>-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers

6:24-26)

January 8, 2009

I had a lumbar puncture 5 years ago, it showed nothing. My Neuro says it is hard to find positive findings that point to NeuroSarcoidosis, it is best diagnosed by symptoms, so he did not want to repeat a bunch of tests,

he only did the MRI to prove I didn't have something else like MS or a tumor. Do you have to have another MRI Marla

Hi,

Did they do a lumbar puncture as well?

Rick

Thank you Marla. You're always the voice of reason and a comfort during times like these. Finally spoke with the doc yesterday. He didn't have a clue what was going on but, to his credit, he made some

calls. Turns out that the radiologist thought my creatinine was too high to handle the contrast. Last lab shows CREA at 1.1 with the normal range of 1.2 max for me. My doc wasn't concerned about the number...the `normal range' doesn't consider muscle mass. I've been

in the gym for years. My doc has seen me and knows the higher value is more than likely attributed to my mass and is normal for me. The radiologist saw me laying down in a tube, covered by a blanket. Better safe than sorry I suppose...just wished they would have

included me in the discussion.Aside from that, Doc said the MRI summary report shows my CREA at 1.4 which is different from the labs he has...could be a typo in the report.

The images without contrast were unremarkable. ..no surprise there. To my way of thinking, the labs should have been reviewed up front. An MRI without contrast for NS is basically worthless... sadly, just a waste of time and money. Lessons learned.

Next time I'll ask to wait until the blood test come back before they schedule a study.Peace, Tony > > > Been away for a bit, trying to live life without thinking too much> > about this thing called neuro sarc. Not that that's worked. Some

> > new symptoms over the past year, enough that the doc put me on> > neurontin for the shooters and order an MRI of the head and c-spine.> >> > I went for my MRI, ordered with and without contrast, yesterday.

The> > imaging dept did the scan without contrast then stopped. The scans> > without contrast took almost 90 minutes which seemed awful long as> > the entire process is typically complete in this amount of time. I

> > held very still and doubt movement was an issue. I asked about the> > rest of the study and was told by the technician that the radiologist> > reviewed the scans and determined that they had enough

information so> > contrast was not necessary. That is all the information they would> > give me other than to say `contact your doctor'. I've had more MRIs> > than I care to remember and have never had them stop half way.

> > Unnerving to say the least. Still haven't heard back from the> > neuro.> >> > Lots of questions…having worked in healthcare for many years, I know> > enough that the radiologist can not over ride an order without the

> > attending's consent. Aside from cheesing off the attending,> > deviating from an order opens up a can of worms liability wise.> > Typically, studies are only stopped due to technical difficulties,

> > patient issues (i.e. trouble injecting the contrast) or sufficient> > data available for a dx. I ruled out the first two which leaves the> > later, hence a lot of

nail biting on my part. I hope that I'm> > overreacting. Has this ever happened to anyone else? Also, does> > anyone have any links relating to the use of MRI studies and> > neurosarc? I've done a bunch of searches but basically came up

> > empty. Any thoughts / help would be sincerely appreciated.> >> > Peace, Tony> >> > > >> > >

> -- > Marla Bramer> Independent Beauty> Consultant Kay> mbramer@... > www.marykay. com/mbramer> > May the Lord bless you and keep you,> May the Lord make his face to shine upon

> You,> And be gracious to you;> May the Lord lift up his favor upon you and give you his peace.> (Numbers 6:24-26)>

-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) com

www.marykay. com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;

May the Lord lift up his favor upon you and give you his peace.(Numbers

6:24-26)

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

January 8, 2009

I've had several MRI's and chest x-rays. The x-rays show my Sarc. My meds (methotrexate)are keeping it in check and I've been fortunate not to have to go on Remicade. When I was first diagnosed with N.S. there was protein in my spinal fluid, after my treatments that has gone away, which is why I had a second spinal tap. We all get this "thing" differently and suffer in different ways. The tests you had are normal, doctors are always ruling out what we don't have by testing.

best wishes,

Rick

Thank you Marla. You're always the voice of reason and a comfort during times like these. Finally spoke with the doc yesterday. He didn't have a clue what was going on but, to his credit, he made some calls. Turns out that the radiologist thought my creatinine was too high to handle the contrast. Last lab shows CREA at 1.1 with the normal range of 1.2 max for me. My doc wasn't concerned about the number...the `normal range' doesn't consider muscle mass. I've been in the gym for years. My doc has seen me and knows the higher value is more than likely attributed to my mass and is normal for me. The radiologist saw me laying down in a tube, covered by a blanket. Better safe than sorry I suppose...just wished they would have included me in the discussion.Aside from that, Doc said the MRI summary report shows my CREA at 1.4 which is different from the labs he has...could be a typo in the report.

The images without contrast were unremarkable. ..no surprise there. To my way of thinking, the labs should have been reviewed up front. An MRI without contrast for NS is basically worthless... sadly, just a waste of time and money. Lessons learned. Next time I'll ask to wait until the blood test come back before they schedule a study.Peace, Tony > > > Been away for a bit, trying to live life without thinking too much> > about this thing called neuro sarc. Not that that's worked. Some> > new symptoms over the past year, enough that the doc put me on> > neurontin for the shooters and order an MRI of the head and c-spine.> >> > I went for my MRI, ordered with and without contrast, yesterday. The> > imaging dept did the scan without contrast then stopped. The scans> > without contrast took almost 90 minutes which seemed awful long as> > the entire process is typically complete in this amount of time. I> > held very still and doubt movement was an issue. I asked about the> > rest of the study and was told by the technician that the radiologist> > reviewed the scans and determined that they had enough information

so> > contrast was not necessary. That is all the information they would> > give me other than to say `contact your doctor'. I've had more MRIs> > than I care to remember and have never had them stop half way.> > Unnerving to say the least. Still haven't heard back from the> > neuro.> >> > Lots of questions…having worked in healthcare for many years, I know> > enough that the radiologist can not over ride an order without the> > attending's consent. Aside from cheesing off the attending,> > deviating from an order opens up a can of worms liability wise.> > Typically, studies are only stopped due to technical difficulties,> > patient issues (i.e. trouble injecting the contrast) or sufficient> > data available for a dx. I ruled out the first two which leaves the> > later, hence a lot of nail biting on my

part. I hope that I'm> > overreacting. Has this ever happened to anyone else? Also, does> > anyone have any links relating to the use of MRI studies and> > neurosarc? I've done a bunch of searches but basically came up> > empty. Any thoughts / help would be sincerely appreciated.> >> > Peace, Tony> >> > > >> > >

> -- > Marla Bramer> Independent Beauty> Consultant Kay> mbramer@... > www.marykay. com/mbramer> > May the Lord bless you and keep you,> May the Lord make his face to shine upon> You,> And be gracious to you;> May the Lord lift up his favor upon you and give you his peace.> (Numbers 6:24-26)>

-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer May the Lord bless you and keep

you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

January 8, 2009

Rick,

what is interesting is that with NS you don't have protein bands in the spinal fluid-- with MS you do. So for you to have shown protein, I wonder why they didn't land you with an MS diagnosis?

My lung xrays and CT's show my lungs almost totally involved with sarc now-- there is very little "dark" space-- healthy lungs show up as darkness, not outlined or filled with white granulomas. The last one taken just a month ago shows the lungs 90% white-- and my heart is no significantly enlarged. Not a good thing... as this signifies that I've gone into Stage 4 pulm sarc with pulmonary fibrosis and pulmonary hypertension. Age wise I might be a candidate for heart/lung transplant-- but I don't want to go that way-- I'd rather skip the transplant and meet my Maker.

NS is a diagnosis many times of ruling out all the other stuff it might be, and then if you have a confirmed biopsy in one place-usually the lungs- then they'll maybe commit to NS.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Thursday, January 8, 2009 6:51:58 PMSubject: Re: Re: MRI has me concerned

I've had several MRI's and chest x-rays. The x-rays show my Sarc. My meds (methotrexate) are keeping it in check and I've been fortunate not to have to go on Remicade. When I was first diagnosed with N.S. there was protein in my spinal fluid, after my treatments that has gone away, which is why I had a second spinal tap. We all get this "thing" differently and suffer in different ways. The tests you had are normal, doctors are always ruling out what we don't have by testing.

best wishes,

Rick

Thank you Marla. You're always the voice of reason and a comfort during times like these. Finally spoke with the doc yesterday. He didn't have a clue what was going on but, to his credit, he made some calls. Turns out that the radiologist thought my creatinine was too high to handle the contrast. Last lab shows CREA at 1.1 with the normal range of 1.2 max for me. My doc wasn't concerned about the number...the `normal range' doesn't consider muscle mass. I've been in the gym for years. My doc has seen me and knows the higher value is more than likely attributed to my mass and is normal for me. The radiologist saw me laying down in a tube, covered by a blanket. Better safe than sorry I suppose...just wished they would have included me in the discussion.Aside from that, Doc said the MRI summary report shows my CREA at 1.4 which is different from the labs he has...could be a typo in the report.

The images without contrast were unremarkable. ..no surprise there. To my way of thinking, the labs should have been reviewed up front. An MRI without contrast for NS is basically worthless... sadly, just a waste of time and money. Lessons learned. Next time I'll ask to wait until the blood test come back before they schedule a study.Peace, Tony > > > Been away for a bit, trying to live life without thinking too much> > about this thing called neuro sarc. Not that that's worked. Some> > new symptoms over the past year, enough that the doc put me on> > neurontin for the shooters and order an MRI of the head and c-spine.> >> > I went for my MRI, ordered with and without contrast, yesterday. The> > imaging dept did the scan without contrast then stopped. The scans> > without contrast took almost 90 minutes which seemed awful long as> > the entire process is typically complete in this amount of time. I> > held very still and doubt movement was an issue. I asked about the> > rest of the study and was told by the technician that the radiologist> > reviewed the scans and determined that they had enough information

so> > contrast was not necessary. That is all the information they would> > give me other than to say `contact your doctor'. I've had more MRIs> > than I care to remember and have never had them stop half way.> > Unnerving to say the least. Still haven't heard back from the> > neuro.> >> > Lots of questions…having worked in healthcare for many years, I know> > enough that the radiologist can not over ride an order without the> > attending's consent. Aside from cheesing off the attending,> > deviating from an order opens up a can of worms liability wise.> > Typically, studies are only stopped due to technical difficulties,> > patient issues (i.e. trouble injecting the contrast) or sufficient> > data available for a dx. I ruled out the first two which leaves the> > later, hence a lot of nail biting on my

part. I hope that I'm> > overreacting. Has this ever happened to anyone else? Also, does> > anyone have any links relating to the use of MRI studies and> > neurosarc? I've done a bunch of searches but basically came up> > empty. Any thoughts / help would be sincerely appreciated.> >> > Peace, Tony> >> > > >> > >

> -- > Marla Bramer> Independent Beauty> Consultant Kay> mbramer@... > www.marykay. com/mbramer> > May the Lord bless you and keep you,> May the Lord make his face to shine upon> You,> And be gracious to you;> May the Lord lift up his favor upon you and give you his peace.> (Numbers 6:24-26)>

-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)-- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26)

January 8, 2009

I forgot to mention that I had a biopsy of a swollen lymph node positive for Sarcoidosis that was how I was dx. otherwise the tests are normal, but I still can't lift my legs up very far, or walk very good, or very far.

Yes it is weird the way we all get this differently, but have a lot the same symptoms. Marla

I've had several MRI's and chest x-rays. The x-rays show my Sarc. My meds (methotrexate)are keeping it in check and I've been fortunate not to have to go on Remicade. When I was first diagnosed with N.S. there was protein in my spinal fluid, after my treatments that has gone away, which is why I had a second spinal tap. We all get this " thing " differently and suffer in different ways. The tests you had are normal, doctors are always ruling out what we don't have by testing.