RE: Mixed Bag Misc. Assortment of Whatevers

[Guest guest]

Hey, , I've missed you. I'm glad that you've gotten some decent care. When The Old Fart says you don't have sarc, does he offer any other possible causes of your neuropathy, etc? Have you ever had a biopsy for sarc--lungs, lymph nodes in the chest, etc? If so, then he's an Ignorant Old Fart. A positive biopsy means that you DO have sarcoidosis. It may or may not be active; it may or may not be causing all of your health problems. If you haven't had a biopsy positive for sarc, that doesn't mean you don't have it; in that case, a GOOD, COMPETENT doctor relies on a detailed history, thorough exam, possibly lab tests (although as we know, those can be normal even with known sarcoidosis), and the good old-fashioned art of medicine! Back in 2001 when I began to have neurological symptoms (actually they began in 1999 with the hearing loss & first Bell's palsy, but it wasn't recognized), 7 years after my lymph node biopsy was positive for sarc, no one disputed the fact that I had sarc, but my neurologist wouldn't treat me for neurosarc because "all the tests were normal." My family doc at the time flipped through all the test pages & said, Look, these are all normal. There's nothing wrong with you that an hour on the treadmill every day wouldn't cure! That's when I went to Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the test results, took a very detailed history & jotted down a whole page of notes, did the most thorough physical exam I've ever had, especially on my feet & legs, then relied on his experience (hundreds of NS patients) and his analysis to confirm the NS & need to begin treatment. One interesting thing is that I saw my pulmonologist before going to Atlanta & he said, "You have neurosarc." I told him that all the tests were normal and he said, "I don't care what the tests say; you have neurosarc!" So there are some docs out there who still trust their own skills & knowledge more than technology, but not many.

Well, I don't know that this was any help. Maybe you could print it out & take it to The Old Fart! You'd have to find another doctor, but wouldn't it be worth it to see his face turn red & his eyes bulge out?!? Keep on truckin', .

Ramblin' Rose

Moderator See if you've won, play MSN Search and Win

[Guest guest]

Sorry everything is so aggrevating right now, hope it will straighten out soon. As to the (PS), cut that out, nobody has said anything about you leaving the group but you....ConnieGARY WOOLARD wrote: Hello, Tracie, I wrote before apolizing for writing stuff awhile back. I know shouldn't be that way, but that "old throw in the towel sydrome" still hangs around more or less all the time. I did one of those things like 6 weeks ago and went down to Ann Arbor V.A. to see the lung doc. I did

this today and had a lung function test of my semi-annual visits to there. This was the best one I had of all of them since of having this diagnois of Sarcoidosis. This very well not like prexisting of having this diagnois, but best since then. I asked this lung doc if I still have Sarcoidosis. He said that's uncertain. It very well is NOT ACTIVE there in my lungs however. I don't disagree with anything what he said. It is this area of pain in my legs & knees that has and is my pressing concern. I'll give my "grading" of these V.A. docs' at the end of this e-mail. My "OLD FART" primary care doctor, Dr. Vande Haar, told me last Wednesday (May 31st) that I DON'T HAVE SARCOIDOSIS. Well, well, if I don't have this, then what is it??????? Arthritic Blood Profile Test for Arthrisis was negative in May, 2002. Testing to see if I had Kidney Disease, Vitamin D-12 Defiency, and Diabeetes that causing this nerve damage of mine were all negative in

summer 2002. I don't have cancer, infections, or an alcohoic that would cause Alcohoic Neuropathy that would cause this nerve damage as well. This "OLD FART" doc of mine very well has thought that BECAUSE I'am not having seizures, strokes, heart attacks, organ damage, etc that I DON'T have Sarcoidosis. He agreed with that rhemy doc and not having an MRI on my legs & knees WHERE all said and done 90 % of my pain is occuring. He said that this rhemy doc got his medical training at the University of Detroit and somewhere else. BIG DEAL!!!!!!!!! Right now this pain in my legs & knees is about #4 compared to last year when it was up to #8 level on a scale of #0 to #10. Summer is just about starting however. I'am sure my pain in this area will increase. My grading of these docs': Pulmonary (lung) --- A Eye ---- A Neurology --- B Rheumology

--- D- Primary Care Doc --- D+ P.s. You y'all want me to leave this group??? __________________________________________________

[Guest guest]

Sorry everything is so aggrevating right now, hope it will straighten out soon. As to the (PS), cut that out, nobody has said anything about you leaving the group but you....ConnieGARY WOOLARD wrote: Hello, Tracie, I wrote before apolizing for writing stuff awhile back. I know shouldn't be that way, but that "old throw in the towel sydrome" still hangs around more or less all the time. I did one of those things like 6 weeks ago and went down to Ann Arbor V.A. to see the lung doc. I did

this today and had a lung function test of my semi-annual visits to there. This was the best one I had of all of them since of having this diagnois of Sarcoidosis. This very well not like prexisting of having this diagnois, but best since then. I asked this lung doc if I still have Sarcoidosis. He said that's uncertain. It very well is NOT ACTIVE there in my lungs however. I don't disagree with anything what he said. It is this area of pain in my legs & knees that has and is my pressing concern. I'll give my "grading" of these V.A. docs' at the end of this e-mail. My "OLD FART" primary care doctor, Dr. Vande Haar, told me last Wednesday (May 31st) that I DON'T HAVE SARCOIDOSIS. Well, well, if I don't have this, then what is it??????? Arthritic Blood Profile Test for Arthrisis was negative in May, 2002. Testing to see if I had Kidney Disease, Vitamin D-12 Defiency, and Diabeetes that causing this nerve damage of mine were all negative in

summer 2002. I don't have cancer, infections, or an alcohoic that would cause Alcohoic Neuropathy that would cause this nerve damage as well. This "OLD FART" doc of mine very well has thought that BECAUSE I'am not having seizures, strokes, heart attacks, organ damage, etc that I DON'T have Sarcoidosis. He agreed with that rhemy doc and not having an MRI on my legs & knees WHERE all said and done 90 % of my pain is occuring. He said that this rhemy doc got his medical training at the University of Detroit and somewhere else. BIG DEAL!!!!!!!!! Right now this pain in my legs & knees is about #4 compared to last year when it was up to #8 level on a scale of #0 to #10. Summer is just about starting however. I'am sure my pain in this area will increase. My grading of these docs': Pulmonary (lung) --- A Eye ---- A Neurology --- B Rheumology

--- D- Primary Care Doc --- D+ P.s. You y'all want me to leave this group??? __________________________________________________

[Guest guest]

Sorry everything is so aggrevating right now, hope it will straighten out soon. As to the (PS), cut that out, nobody has said anything about you leaving the group but you....ConnieGARY WOOLARD wrote: Hello, Tracie, I wrote before apolizing for writing stuff awhile back. I know shouldn't be that way, but that "old throw in the towel sydrome" still hangs around more or less all the time. I did one of those things like 6 weeks ago and went down to Ann Arbor V.A. to see the lung doc. I did

this today and had a lung function test of my semi-annual visits to there. This was the best one I had of all of them since of having this diagnois of Sarcoidosis. This very well not like prexisting of having this diagnois, but best since then. I asked this lung doc if I still have Sarcoidosis. He said that's uncertain. It very well is NOT ACTIVE there in my lungs however. I don't disagree with anything what he said. It is this area of pain in my legs & knees that has and is my pressing concern. I'll give my "grading" of these V.A. docs' at the end of this e-mail. My "OLD FART" primary care doctor, Dr. Vande Haar, told me last Wednesday (May 31st) that I DON'T HAVE SARCOIDOSIS. Well, well, if I don't have this, then what is it??????? Arthritic Blood Profile Test for Arthrisis was negative in May, 2002. Testing to see if I had Kidney Disease, Vitamin D-12 Defiency, and Diabeetes that causing this nerve damage of mine were all negative in

summer 2002. I don't have cancer, infections, or an alcohoic that would cause Alcohoic Neuropathy that would cause this nerve damage as well. This "OLD FART" doc of mine very well has thought that BECAUSE I'am not having seizures, strokes, heart attacks, organ damage, etc that I DON'T have Sarcoidosis. He agreed with that rhemy doc and not having an MRI on my legs & knees WHERE all said and done 90 % of my pain is occuring. He said that this rhemy doc got his medical training at the University of Detroit and somewhere else. BIG DEAL!!!!!!!!! Right now this pain in my legs & knees is about #4 compared to last year when it was up to #8 level on a scale of #0 to #10. Summer is just about starting however. I'am sure my pain in this area will increase. My grading of these docs': Pulmonary (lung) --- A Eye ---- A Neurology --- B Rheumology

--- D- Primary Care Doc --- D+ P.s. You y'all want me to leave this group??? __________________________________________________

[Guest guest]

, thanks for the review. One of the things we are going to do

once the chat rooms are up & running smoothly is to have a website

for members to publish their sarc stories, voluntarily of course.

That way, when I can't remember which has the heart problem or

whatever, I can go there. Also new members can read some of our

stories there so that we don't have to repeat them so many times, as

that can be very tiring & time-consuming. And for you, with your

computer time limited, that would really be helpful. I'm working on

a form that we can use, or just tell it as you did.

Anyway, does this Old Fart think that sarc can just disappear? You

are smart to have these reports to show them. That's why we urge

everyone to get copies of all their tests, biopsies, etc. I also had

a biopsy by mediastinoscopy, then 8 years later by lung biopsy. If

you are already known to have sarcoidosis, then develop neurological

symptoms that can't be explained by anything else, you are presumed

to have neurosarc. I think that some of these bozos took the wrong

exit off the freeway & wound up at medical school instead of clown

college.

It's frustrating for anyone, but when you are stuck in the VA system,

it's even worse. My brother in Houston has been going through this

for at least 2 years, with poor circulation, chronic blood clots in

his legs, tremors. Different docs at the VA tell him different

things. He's almost 64. I wish I could go down there & go to an

appt with him. Well, I don't want to use up all your computer time,

so it's over & out for now. Rose

> Hey, , I've missed you. I'm glad that you've

gotten some decent care. When The Old Fart says you don't have sarc,

does he offer any other possible causes of your neuropathy, etc?

Have you ever had a biopsy for sarc--lungs, lymph nodes in the chest,

etc? If so, then he's an Ignorant Old Fart. A positive biopsy means

that you DO have sarcoidosis. It may or may not be active; it may or

may not be causing all of your health problems. If you haven't had a

biopsy positive for sarc, that doesn't mean you don't have it; in

that case, a GOOD, COMPETENT doctor relies on a detailed history,

thorough exam, possibly lab tests (although as we know, those can be

normal even with known sarcoidosis), and the good old-fashioned art

of medicine! Back in 2001 when I began to have neurological symptoms

(actually they began in 1999 with the hearing loss & first Bell's

palsy, but it wasn't recognized), 7 years after my lymph node biopsy

was positive for sarc, no one

> disputed the fact that I had sarc, but my neurologist wouldn't

treat me for neurosarc because " all the tests were normal. " My

family doc at the time flipped through all the test pages & said,

Look, these are all normal. There's nothing wrong with you that an

hour on the treadmill every day wouldn't cure! That's when I went to

Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the

test results, took a very detailed history & jotted down a whole page

of notes, did the most thorough physical exam I've ever had,

especially on my feet & legs, then relied on his experience (hundreds

of NS patients) and his analysis to confirm the NS & need to begin

treatment. One interesting thing is that I saw my pulmonologist

before going to Atlanta & he said, " You have neurosarc. " I told him

that all the tests were normal and he said, " I don't care what the

tests say; you have neurosarc! " So there are some docs out there who

still trust their own skills & knowledge more than

> technology, but not many.

> Well, I don't know that this was any help. Maybe you could print

it out & take it to The Old Fart! You'd have to find another doctor,

but wouldn't it be worth it to see his face turn red & his eyes bulge

out?!? Keep on truckin', .

> Ramblin' Rose

> Moderator

>

>

>

>

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

> See if you've won, play MSN Search and Win

>

>

>

> __________________________________________________

>

[Guest guest]

...forgive me for jumping in .... but we all go through

the " throwing in the towel syndrome " I did that all through Dec and

January. If I had not had Iritis so badly in my eyes no one would

still be listening now. Hang in there and keep being pushing the

docs...It is the squeeky wheel that gets the attention! I only had

military doctors for almost 30 year and I know there are fine ones

out there - one of them saved my life by doing a biopsy on a lump

that others probably would have just watched. I pray you will find

the good one in the batch soon!

Ruth

>

> Hello,

>

> Tracie, I wrote before apolizing for writing stuff awhile back.

I know shouldn't be that way, but that " old throw in the towel

sydrome " still hangs around more or less all the time.

> I did one of those things like 6 weeks ago and went down to Ann

Arbor V.A. to see the lung doc. I did this today and had a lung

function test of my semi-annual visits to there. This was the best

one I had of all of them since of having this diagnois of

Sarcoidosis. This very well not like prexisting of having this

diagnois, but best since then. I asked this lung doc if I still have

Sarcoidosis. He said that's uncertain. It very well is NOT ACTIVE

there in my lungs however. I don't disagree with anything what he

said. It is this area of pain in my legs & knees that has and is my

pressing concern. I'll give my " grading " of these V.A. docs' at the

end of this e-mail.

>

> My " OLD FART " primary care doctor, Dr. Vande Haar, told me last

Wednesday (May 31st) that I DON'T HAVE SARCOIDOSIS. Well, well, if I

don't have this, then what is it??????? Arthritic Blood Profile Test

for Arthrisis was negative in May, 2002. Testing to see if I had

Kidney Disease, Vitamin D-12 Defiency, and Diabeetes that causing

this nerve damage of mine were all negative in summer 2002. I don't

have cancer, infections, or an alcohoic that would cause Alcohoic

Neuropathy that would cause this nerve damage as well. This " OLD

FART " doc of mine very well has thought that BECAUSE I'am not having

seizures, strokes, heart attacks, organ damage, etc that I DON'T

have Sarcoidosis. He agreed with that rhemy doc and not having an

MRI on my legs & knees WHERE all said and done 90 % of my pain is

occuring. He said that this rhemy doc got his medical training at

the University of Detroit and somewhere else. BIG DEAL!!!!!!!!!

Right now this pain in my legs & knees is about #4

> compared to last year when it was up to #8 level on a scale of #0

to #10. Summer is just about starting however. I'am sure my pain in

this area will increase.

>

> My grading of these docs':

>

> Pulmonary (lung) --- A

> Eye ---- A

> Neurology --- B

> Rheumology --- D-

> Primary Care Doc --- D+

>

>

> P.s. You y'all want me to leave this group???

>

> __________________________________________________

>

[Guest guest]

Connie, I'am not sure that this would do any good at all to do this. Like I stated in the past and these past few weeks, the only "positive" of having Sarcoidosis at all was after I had an Ct-scan on my lungs in Janurary, 2002. This was after I had that Medianscopy done the previous December, 2001. Nothing has changed for the worst in my opinion of what the V.A. doctors viewed of what has overall had happened to me regarding this sarcoid all these years. I asked an neurologist at the Ann Arbor V.A. Hospital last year that if this neuro stuff going on in my legs got bad enough that would be hard to stand up and walk would make me to considered as disabled, and he said yes. Now this idiot rhemy doc thinks this pain in my legs is Fibroymoglia (mispelled?). Yeah, right!!!!!!! That doesn't explain this periheral neuropathy that I have still going on everyday with NO remission at all since March, 2003. I'd very well had what is called a

"flare up" going on in my legs last May to November, 2005. On a scale of 0 to 10, this pain in my legs last year was an estimated high of a "8". Lately, it is only to about a "4". Tracie & Rose have said I should get a disability attorney at different times this past year. There's nothing going on right now that any test I would have done that would give an indication that I'am disabled. I have this weakness and some pain in my legs, but this is not preventing me from standing, walking, and I still can run. Some of these nerve damages I understand MAY take years & years going on to be bad enough that a person can be considered as disabled (at least as in the legs that is). What is there to do? If I did get an disability attorney and sued the V.A. to have an MRI done on my knees & legs and have this done and there showed small lesions in my legs, this would proved along what I've been telling them. Then what? ", do want to

take some anti-inflammatary drug such as Prednisone with all those bad side affects?" Right now I'am still at the situation that taking Prednisone or anyother "cousin" drug to Prednisone will do more harm than good. I've written before of what I'am about to say. Connie and these newer people may not know about this subject matter unless you look up in the Archives of this website to around fall, 2004 to spring, 2005 when I wrote about it. It is this, I have an 21 previous history of Peptic Ulcer Disease PRIOR to this diagnois of Sarcoidosis as of December, 2001. Taking antibotics for that H-pryori bacteria that is associated with these stomach ulcers, has made this bacteria go away only to resurfaced again here and there. Taking Prednisone with the characterics of being anti-inflammatary and immune supressive drug is all the right ingredients for me to develope an bleeding ulcer. If I was on this Prednisone and developed an bleeding ulcer, I cannot stop taking this

Prednisone abruptly. Why????? Because in doing so, brings on worst symptoms for whatever reason to go on Prednisone in the first place. Meanwhile having a bleeding ulcer day after day, week after week, month after month. A person going off this Prednisone has to be what is called WEANED OFF TAKING THIS DRUG. In other words, to slowly drop down to a smaller dosage amount from the intialed starting dosage amount. THIS CAN TAKE WEEKS & WEEKS OR EVEN MONTHS TO DO THIS. It is a case by case scenario of how this would be done on any indiviudals. A bleeding ulcer makes a person amemic, weakness due to lost of blood and consqently lost of blood pressure over a period of time. This go untreated in itself could be fatal. Connie, and rest of all women here. Y'all can relate to lost of blood of having the menstral period because that is a fact that all women can relate too. I don't think any women in the history of this planet would take willingly

allow to have more menstral period days to stretch into weeks, let alone months. NO YOU WOULDN'T!!!!!!!!!! Most women probility would say, ONE MENTRAL PERIOD DAY IS ONE DAY OF THIS TOO MANY!!!!!!!! Do you understand my dimlenia???? I'am a very, very poor patient candicated to start taking Prednisone or any of it's "cousin" anti-inflammatary drugs period in the past, now, or the future. Sorry for rambling on as usual here. Connie Griffis wrote: , have you considered sending you medical records

to the VA sarcoidosis specialist in Augusta, GA? He is the only sarc specialist in the entire state of GA, maybe he can help///ConnieGARY WOOLARD wrote: Rose, I guess I should refresh your memory. After I went to Harper Hospital in Detroit for my brother Dale to do bone marrow testing for him, I found out I had lesions or unknown growths there in my lungs from the chest x-rays. I had an Bronchoscopy (scope down inside my lungs) back in October, 2001 about 2 months later. Negative for cancer, but I had some rare bacteria of some kind down in that dungeon called the lungs. Next step to further be a more difinative diagnois is that I had an Mediastinoscopy done outside of my lungs between them and the rib cage. Mediastinal Lymphdenpathy (mispelled?) of Non-castising granulomas

junk. This last test mentioned was done in December, 2001. The following month of Janurary, 2002 after having an Ct-scan of my lungs I have a report of diagnois of Sarcoidosis that I written what this report stated before a long time ago. So this is what I always had as a information/data report of having Sarcoidosis after this Ct-scan in Janurary, 2002. Since then, this pain in my bones, muscles, and periheral neuropathy that I have is all circumstancial that it is from Sarcoidosis as well. Arthritic Blood Profile Test for arthrisis that I had in June, 2002 I believe it took place was negative for arthrisis. Blood tests for Kidney Disease, Vitamin D-12 Defiency, and Diabeetes were all negative that all 3 of these can causes periheral neuropathy that I had done. Neurologist, or that different primary care doctor I had way back in spring, 2002; Dr. told me I don't have cancer, Alcohoic Neuropathy, infections, and my mild disc bulge in

my back were ALL not causing this periheral neuropathy as well. See, Sarcoidosis may very well all the long time be causing these other pain areas other than my lungs, but I still don't have difinitive proof of one way or another (in the bones, muscles, & neuropathy). BUT I SHOWED THIS MEDIASTINOSCOPY AND MY FOLLOW UP CT-SCAN OF MY LUNGS TO THAT "OLD FART" PRIMARY CARE DOCTOR AT THE V.A. HEALTH CLINIC THAT STATED DIAGNOIS OF SARCOIDOSIS AT 3 DIFFERENT TIMES. I showed these reports to neurologists & lung doctors at Ann Arbor V.A. Hospital before back in 2002-2003. They believed what those reports stated and view that these doctors that did these tests were trustworthy about this data. The person that did this Mediastinoscopy on my lungs was and if he is still doing this type of work, was and is a SURGEON. This was done at Blodgett Campus, Spectrum Health Hospitals. This hospital and the former Butterworth

Hospital merged together to form Spectrum Health Hospitals. These 2 hospitals are part of the 4 private sector hospitals in this metro area. Where I had this Bronchoscopy done was at St. 's Hospital in G.R. I've been so frustrated at times with this medical care and/or docs with the V.A., that has been a factor in apathy to resolve these matters over the years. "Throw in the Towel Syndrome" is still lingering around in those warped brain cells of mine. Rose wrote: Hey, , I've missed you. I'm glad that you've gotten some decent care. When The Old Fart says you don't have sarc, does he offer any other possible causes of your neuropathy, etc? Have you ever had a biopsy for sarc--lungs, lymph

nodes in the chest, etc? If so, then he's an Ignorant Old Fart. A positive biopsy means that you DO have sarcoidosis. It may or may not be active; it may or may not be causing all of your health problems. If you haven't had a biopsy positive for sarc, that doesn't mean you don't have it; in that case, a GOOD, COMPETENT doctor relies on a detailed history, thorough exam, possibly lab tests (although as we know, those can be normal even with known sarcoidosis), and the good old-fashioned art of medicine! Back in 2001 when I began to have neurological symptoms (actually they began in 1999 with the hearing loss & first Bell's palsy, but it wasn't recognized), 7 years after my lymph node biopsy was positive for sarc, no one disputed the fact that I had sarc, but my neurologist wouldn't treat me for neurosarc because "all the tests were normal." My family doc at the time flipped through all the test pages & said, Look, these are all

normal. There's nothing wrong with you that an hour on the treadmill every day wouldn't cure! That's when I went to Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the test results, took a very detailed history & jotted down a whole page of notes, did the most thorough physical exam I've ever had, especially on my feet & legs, then relied on his experience (hundreds of NS patients) and his analysis to confirm the NS & need to begin treatment. One interesting thing is that I saw my pulmonologist before going to Atlanta & he said, "You have neurosarc." I told him that all the tests were normal and he said, "I don't care what the tests say; you have neurosarc!" So there are some docs out there who still trust their own skills & knowledge more than technology, but not many. Well, I don't know that this was any help. Maybe you could print it out & take

it to The Old Fart! You'd have to find another doctor, but wouldn't it be worth it to see his face turn red & his eyes bulge out?!? Keep on truckin', . Ramblin' Rose Moderator See if you've won, play MSN Search and Win __________________________________________________

[Guest guest]

Luv ya Ruth, I am so very happy that you are feeling better.....ConnieRuth wrote: Dear Rose,Thank you for pointing out that just because the doctor has this "wonderful" doploma hanging on their wall doesn't mean they know what they are talking about! The doc I saw at IUMC last year told me one thing, my primary, Rheumatologist and Neurologist here in ville something else so of course I looked stupid! She too told me I no longer had Sarcoid and stopped most of my lung meds. Thank the Heavens that I didn't

listen to much of what she suggested and am now relying on the local docs and that they have come around. My Neurologist actually said he was happy I'd decided to depend on the "local docs". It was allllll I could do not to say..well if you'd been willing to treat me I'd not have gone anywhere else!!!Ron...my greatest challenge? To come to forgive the local docs that didn't want to treat me at all last summer and to trust that they are now on the correct "treatment" boat! Yes I am blessed that they have made that 180 turn around...but it was scary wondering at each appt if they would revert back and not do the new treatment. I am blessed...I got to swing my grandchildren on their swing set today and I had a pedi and manicure (with sparkly polish) from a silly 3 year old. I never relized until I pushed that swing how much I really meant it when I told the doctors all I wanted was to be able to be a

grandmother again! I can deal with the lose of everything else because of the joy this brings....Thanks for listening...Ruth> > Hey, , I've missed you. I'm glad that you've > gotten some decent care. When The Old Fart says you don't have sarc, > does he offer any other possible causes of your neuropathy, etc? > Have you ever had a biopsy for sarc--lungs, lymph nodes in the chest, > etc? If so, then he's an Ignorant Old Fart. A positive biopsy means > that you DO have sarcoidosis. It may or may not be active; it may or > may not be causing all of your health problems. If you haven't had a > biopsy positive for sarc, that doesn't mean you don't have it; in > that case, a GOOD, COMPETENT doctor relies on a detailed history, > thorough exam, possibly lab tests (although as we know, those can be > normal even with known sarcoidosis), and the good

old-fashioned art > of medicine! Back in 2001 when I began to have neurological symptoms > (actually they began in 1999 with the hearing loss & first Bell's > palsy, but it wasn't recognized), 7 years after my lymph node biopsy > was positive for sarc, no one> > disputed the fact that I had sarc, but my neurologist wouldn't > treat me for neurosarc because "all the tests were normal." My > family doc at the time flipped through all the test pages & said, > Look, these are all normal. There's nothing wrong with you that an > hour on the treadmill every day wouldn't cure! That's when I went to > Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the > test results, took a very detailed history & jotted down a whole page > of notes, did the most thorough physical exam I've ever had, > especially on my feet & legs, then relied on his

experience (hundreds > of NS patients) and his analysis to confirm the NS & need to begin > treatment. One interesting thing is that I saw my pulmonologist > before going to Atlanta & he said, "You have neurosarc." I told him > that all the tests were normal and he said, "I don't care what the > tests say; you have neurosarc!" So there are some docs out there who > still trust their own skills & knowledge more than> > technology, but not many.> > Well, I don't know that this was any help. Maybe you could print > it out & take it to The Old Fart! You'd have to find another doctor, > but wouldn't it be worth it to see his face turn red & his eyes bulge > out?!? Keep on truckin', .> > Ramblin' Rose> > Moderator> > > > > > > > > >

---------------------------------> > See if you've won, play MSN Search and Win > > > > > > > > __________________________________________________> >

[Guest guest]

Luv ya Ruth, I am so very happy that you are feeling better.....ConnieRuth wrote: Dear Rose,Thank you for pointing out that just because the doctor has this "wonderful" doploma hanging on their wall doesn't mean they know what they are talking about! The doc I saw at IUMC last year told me one thing, my primary, Rheumatologist and Neurologist here in ville something else so of course I looked stupid! She too told me I no longer had Sarcoid and stopped most of my lung meds. Thank the Heavens that I didn't

listen to much of what she suggested and am now relying on the local docs and that they have come around. My Neurologist actually said he was happy I'd decided to depend on the "local docs". It was allllll I could do not to say..well if you'd been willing to treat me I'd not have gone anywhere else!!!Ron...my greatest challenge? To come to forgive the local docs that didn't want to treat me at all last summer and to trust that they are now on the correct "treatment" boat! Yes I am blessed that they have made that 180 turn around...but it was scary wondering at each appt if they would revert back and not do the new treatment. I am blessed...I got to swing my grandchildren on their swing set today and I had a pedi and manicure (with sparkly polish) from a silly 3 year old. I never relized until I pushed that swing how much I really meant it when I told the doctors all I wanted was to be able to be a

grandmother again! I can deal with the lose of everything else because of the joy this brings....Thanks for listening...Ruth> > Hey, , I've missed you. I'm glad that you've > gotten some decent care. When The Old Fart says you don't have sarc, > does he offer any other possible causes of your neuropathy, etc? > Have you ever had a biopsy for sarc--lungs, lymph nodes in the chest, > etc? If so, then he's an Ignorant Old Fart. A positive biopsy means > that you DO have sarcoidosis. It may or may not be active; it may or > may not be causing all of your health problems. If you haven't had a > biopsy positive for sarc, that doesn't mean you don't have it; in > that case, a GOOD, COMPETENT doctor relies on a detailed history, > thorough exam, possibly lab tests (although as we know, those can be > normal even with known sarcoidosis), and the good

old-fashioned art > of medicine! Back in 2001 when I began to have neurological symptoms > (actually they began in 1999 with the hearing loss & first Bell's > palsy, but it wasn't recognized), 7 years after my lymph node biopsy > was positive for sarc, no one> > disputed the fact that I had sarc, but my neurologist wouldn't > treat me for neurosarc because "all the tests were normal." My > family doc at the time flipped through all the test pages & said, > Look, these are all normal. There's nothing wrong with you that an > hour on the treadmill every day wouldn't cure! That's when I went to > Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the > test results, took a very detailed history & jotted down a whole page > of notes, did the most thorough physical exam I've ever had, > especially on my feet & legs, then relied on his

experience (hundreds > of NS patients) and his analysis to confirm the NS & need to begin > treatment. One interesting thing is that I saw my pulmonologist > before going to Atlanta & he said, "You have neurosarc." I told him > that all the tests were normal and he said, "I don't care what the > tests say; you have neurosarc!" So there are some docs out there who > still trust their own skills & knowledge more than> > technology, but not many.> > Well, I don't know that this was any help. Maybe you could print > it out & take it to The Old Fart! You'd have to find another doctor, > but wouldn't it be worth it to see his face turn red & his eyes bulge > out?!? Keep on truckin', .> > Ramblin' Rose> > Moderator> > > > > > > > > >

---------------------------------> > See if you've won, play MSN Search and Win > > > > > > > > __________________________________________________> >

[Guest guest]

Connie, I only had 3 blood tests that elimated 3 different causes of periheral neuropathy like I stated before in the past (Vitamin D-12 Defiency, Kidney Disease, & Diabeetes). Is there other blood tests that a person could have to have a diagnois of nerve damage? Well I don't know the answer to that question. There maybe some or none I just don't know. If there others tests for this nerve damage, I wasn't tested for them. Way back in the summer, 2002 to even up to the present I have at different times been told by a neurologist and that "Old Fart" primary care doctor of mine that this nerve damage may very well cause by a "pre-diabeetes condition". One of these tests for diabeetes I had was 131 or something like that. I may be wrong, but it seems to me that any of these tests below 120 is normal. The reason there has been this line of thinking or reasoning by the V.A. doctors that this nerve damage is cause by diabeetes is because my

deceased maternal grandfather (my mother's dad) had mild diabeetes in his later years of his life. I said before I think that my diabeetes testing was all negative but I forgot about this one test mentioned above. Anyway, I'am still in that "limbo land" of uncertainly if this nerve damage is indeed caused by Sarcoidosis. This only has been going on since 2002. 2006 is on that calender last time I looked. See, I had just wanted to get to the bottom of what is causing this pain in my knees & legs. Like what I told Tim yesterday, having a MRI done does not expose a person to raditation like in x-rays & Ct-scans. Having this may not diagnois of neuro involvement from Sarcoidosis but then again there may be a indication of this going on there in my legs. I guess the only option I have now is to get a attorney and have him sue the V.A. for me to have an MRI done on my legs. Whether this be done or not is anyone's guess. I use that Chilli

Pepper cream that Rose mentioned about in her reason e-mail that she had sent out. I'am finding that this still helps, but I have had to use an increase amount there on the backside of my legs. I have this jerking feeling that Terri mentioned in her reason e-mail occassionly. In fact that happened this morning on the backside of my neck and my right side of my face. I suspect this occassionly cramps that I have is cause by this nerve damage. Well enough rambling on on that stuff. P.S. Ron, those food stuff you mentioned about of cheese something is GROSS!!!!!!!!!!!!!! Like those folks down in Oklahoma & Texas that eat rattlesnake meat!!!!!!!!!!! UGH!!!!!!!!!!!!!!!!!Connie Griffis wrote: , I haven't read the archives yet, and yes I understand; I was an REMT & passed my paramedic training. Maybe you will be able to figure out something soon, I'm sorry it is so frustrating right now...ConnieGARY WOOLARD wrote: Connie, I'am not sure that this would do any good at all to do this. Like I stated in the past and these past few weeks, the only "positive" of having Sarcoidosis at all was after I had an Ct-scan on my lungs in Janurary,

2002. This was after I had that Medianscopy done the previous December, 2001. Nothing has changed for the worst in my opinion of what the V.A. doctors viewed of what has overall had happened to me regarding this sarcoid all these years. I asked an neurologist at the Ann Arbor V.A. Hospital last year that if this neuro stuff going on in my legs got bad enough that would be hard to stand up and walk would make me to considered as disabled, and he said yes. Now this idiot rhemy doc thinks this pain in my legs is Fibroymoglia (mispelled?). Yeah, right!!!!!!! That doesn't explain this periheral neuropathy that I have still going on everyday with NO remission at all since March, 2003. I'd very well had what is called a "flare up" going on in my legs last May to November, 2005. On a scale of 0 to 10, this pain in my legs last year was an estimated high of a "8". Lately, it is only to about a "4". Tracie & Rose have said I should get a disability attorney at different

times this past year. There's nothing going on right now that any test I would have done that would give an indication that I'am disabled. I have this weakness and some pain in my legs, but this is not preventing me from standing, walking, and I still can run. Some of these nerve damages I understand MAY take years & years going on to be bad enough that a person can be considered as disabled (at least as in the legs that is). What is there to do? If I did get an disability attorney and sued the V.A. to have an MRI done on my knees & legs and have this done and there showed small lesions in my legs, this would proved along what I've been telling them. Then what? ", do want to take some anti-inflammatary drug such as Prednisone with all those bad side affects?" Right now I'am still at the situation that taking Prednisone or anyother "cousin" drug to Prednisone will do more harm than good. I've written before of what I'am about to

say. Connie and these newer people may not know about this subject matter unless you look up in the Archives of this website to around fall, 2004 to spring, 2005 when I wrote about it. It is this, I have an 21 previous history of Peptic Ulcer Disease PRIOR to this diagnois of Sarcoidosis as of December, 2001. Taking antibotics for that H-pryori bacteria that is associated with these stomach ulcers, has made this bacteria go away only to resurfaced again here and there. Taking Prednisone with the characterics of being anti-inflammatary and immune supressive drug is all the right ingredients for me to develope an bleeding ulcer. If I was on this Prednisone and developed an bleeding ulcer, I cannot stop taking this Prednisone abruptly. Why????? Because in doing so, brings on worst symptoms for whatever reason to go on Prednisone in the first place. Meanwhile having a bleeding ulcer day after day, week after week, month after month. A person going off this Prednisone has to be

what is called WEANED OFF TAKING THIS DRUG. In other words, to slowly drop down to a smaller dosage amount from the intialed starting dosage amount. THIS CAN TAKE WEEKS & WEEKS OR EVEN MONTHS TO DO THIS. It is a case by case scenario of how this would be done on any indiviudals. A bleeding ulcer makes a person amemic, weakness due to lost of blood and consqently lost of blood pressure over a period of time. This go untreated in itself could be fatal. Connie, and rest of all women here. Y'all can relate to lost of blood of having the menstral period because that is a fact that all women can relate too. I don't think any women in the history of this planet would take willingly allow to have more menstral period days to stretch into weeks, let alone months. NO YOU WOULDN'T!!!!!!!!!! Most women probility would say, ONE MENTRAL PERIOD DAY IS ONE DAY OF THIS TOO MANY!!!!!!!! Do you understand my dimlenia???? I'am a very, very poor

patient candicated to start taking Prednisone or any of it's "cousin" anti-inflammatary drugs period in the past, now, or the future. Sorry for rambling on as usual here. Connie Griffis wrote: , have you considered sending you medical records to the VA sarcoidosis specialist in Augusta, GA? He is the only sarc specialist in the entire state of GA, maybe he can help///ConnieGARY WOOLARD wrote: Rose, I guess I should refresh your memory. After I went to Harper Hospital in Detroit for my brother Dale to do bone marrow testing for him, I found out I had lesions or unknown growths there in my lungs from the

chest x-rays. I had an Bronchoscopy (scope down inside my lungs) back in October, 2001 about 2 months later. Negative for cancer, but I had some rare bacteria of some kind down in that dungeon called the lungs. Next step to further be a more difinative diagnois is that I had an Mediastinoscopy done outside of my lungs between them and the rib cage. Mediastinal Lymphdenpathy (mispelled?) of Non-castising granulomas junk. This last test mentioned was done in December, 2001. The following month of Janurary, 2002 after having an Ct-scan of my lungs I have a report of diagnois of Sarcoidosis that I written what this report stated before a long time ago. So this is what I always had as a information/data report of having Sarcoidosis after this Ct-scan in Janurary, 2002. Since then, this pain in my bones, muscles, and periheral neuropathy that I have is all circumstancial that it is from Sarcoidosis as well. Arthritic Blood Profile Test for arthrisis that

I had in June, 2002 I believe it took place was negative for arthrisis. Blood tests for Kidney Disease, Vitamin D-12 Defiency, and Diabeetes were all negative that all 3 of these can causes periheral neuropathy that I had done. Neurologist, or that different primary care doctor I had way back in spring, 2002; Dr. told me I don't have cancer, Alcohoic Neuropathy, infections, and my mild disc bulge in my back were ALL not causing this periheral neuropathy as well. See, Sarcoidosis may very well all the long time be causing these other pain areas other than my lungs, but I still don't have difinitive proof of one way or another (in the bones, muscles, & neuropathy). BUT I SHOWED THIS MEDIASTINOSCOPY AND MY FOLLOW UP CT-SCAN OF MY LUNGS TO THAT "OLD FART" PRIMARY CARE DOCTOR AT THE V.A. HEALTH CLINIC THAT STATED DIAGNOIS OF SARCOIDOSIS AT 3 DIFFERENT TIMES. I showed these reports to

neurologists & lung doctors at Ann Arbor V.A. Hospital before back in 2002-2003. They believed what those reports stated and view that these doctors that did these tests were trustworthy about this data. The person that did this Mediastinoscopy on my lungs was and if he is still doing this type of work, was and is a SURGEON. This was done at Blodgett Campus, Spectrum Health Hospitals. This hospital and the former Butterworth Hospital merged together to form Spectrum Health Hospitals. These 2 hospitals are part of the 4 private sector hospitals in this metro area. Where I had this Bronchoscopy done was at St. 's Hospital in G.R. I've been so frustrated at times with this medical care and/or docs with the V.A., that has been a factor in apathy to resolve these matters over the years. "Throw in the Towel Syndrome" is still lingering around in those warped brain cells of mine. Rose wrote: Hey, , I've missed you. I'm glad that you've gotten some decent care. When The Old Fart says you don't have sarc, does he offer any other possible causes of your neuropathy, etc? Have you ever had a biopsy for sarc--lungs, lymph nodes in the chest, etc? If so, then he's an Ignorant Old Fart. A positive biopsy means that you DO have sarcoidosis. It may or may not be active; it may or may not be causing all of your health problems. If you haven't had a biopsy positive for sarc, that doesn't mean you don't have it; in that case, a GOOD, COMPETENT doctor relies on a detailed history, thorough exam, possibly lab tests (although as we know, those can be normal even with known sarcoidosis), and the good old-fashioned art

of medicine! Back in 2001 when I began to have neurological symptoms (actually they began in 1999 with the hearing loss & first Bell's palsy, but it wasn't recognized), 7 years after my lymph node biopsy was positive for sarc, no one disputed the fact that I had sarc, but my neurologist wouldn't treat me for neurosarc because "all the tests were normal." My family doc at the time flipped through all the test pages & said, Look, these are all normal. There's nothing wrong with you that an hour on the treadmill every day wouldn't cure! That's when I went to Atlanta, Georgia to see Dr. Stern at Emory Univ. He read all the test results, took a very detailed history & jotted down a whole page of notes, did the most thorough physical exam I've ever had, especially on my feet & legs, then relied on his experience (hundreds of NS patients) and his analysis to confirm the NS & need to begin treatment. One interesting

thing is that I saw my pulmonologist before going to Atlanta & he said, "You have neurosarc." I told him that all the tests were normal and he said, "I don't care what the tests say; you have neurosarc!" So there are some docs out there who still trust their own skills & knowledge more than technology, but not many. Well, I don't know that this was any help. Maybe you could print it out & take it to The Old Fart! You'd have to find another doctor, but wouldn't it be worth it to see his face turn red & his eyes bulge out?!? Keep on truckin', . Ramblin' Rose Moderator See if you've won, play MSN Search and Win __________________________________________________