Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi... I had a visit with my neuro-surgeon yesterday. We have a pathology report from Presbyterian Hospital of Dallas & MD in Houston confirming that a specimen taken from my right optic nerve area is granulomatous inflammation with benign fibrosis. Report or stains for acid fast organisms and fungal organisms tested negative. Also, mycobacterial immunostain tested negative. We talked about proceeding with the spinal tap to see if NS shows up in the spinal fluid. I really want to get a firm diagnosis if possible. Guess my first question to you guys who've been there... Is proceeding with the spinal tap the best direction to head? Second question: I read that Fitzgeral at UT Southwestern in Dallas works with pulminary sarc. Do you guys know of any doctors in the Dallas area who have actually seen and worked with neurosarcoidosis? Any input, information, thoughts, etc., are appreciated. I am walking this path alone with the exception of God and you guys. Help! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Guess my first question to you guys who've been there... Is proceeding with the spinal tap the best direction to head? Christy, a spinal tap will only tell them if there is inflammation in the spinal fluid. There is yet to be a test that will 100% confirm that you have neurosarc. Remember, this is a disease that is diagnosed after all the tests are done that rule out the other stuff- like MS, Gullian-Barre, etc. Since they found granulomatous disease in the temporal artery, you probably have a working diagnosis of "granulomatous disease, of unknown origin". Do you have any other signs, the joint pain, fatigue, exhaustion, dementia, etc? Second question: I read that Fitzgeral at UT Southwestern in Dallas works with pulminary sarc. Do you guys know of any doctors in the Dallas area who have actually seen and worked with neurosarcoidosis? One of our Texans might be able to help-- Fitzgerald is the only one listed in Texas. You might want to check around and call an infectious disease MD or Immunologists/Rheumatologists. Make sure you go to the website http://www.elderwyn.com/neurosarcoidosis/ Reread the info there and take it with you to your appt. This is really good stuff and at least gets the testing going in the right direction. It also gives the MD some ideas of different medication choices. Hope this helps, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Christy, I live in Plano and I have hydrocephalus and have been being treated for neurosarcoidosis since 1995 but was diagnosed at MD . I saw an opthamologist this week that my neurosurgeon at Presbyterian Plano wanted me to see and he is now looking into the possibility of MS because of something that my eyes are not doing that they should be and because of optic neuritis. The neurosurgeon down here has also been trying to get me set up to see a good doctor down here for the neurosarcoidosis, I will let you know what the outcome is and who he suggests, he is a really good surgeon and really caring so I know he will want me to see someone who knows their stuff. Your friend in Plano, Jeanna -- Seeking Name of Doctor Hi... I had a visit with my neuro-surgeon yesterday. We have a pathology report from Presbyterian Hospital of Dallas & MD in Houston confirming that a specimen taken from my right optic nerve area is granulomatous inflammation with benign fibrosis. Report or stains for acid fast organisms and fungal organisms tested negative. Also, mycobacterial immunostain tested negative.We talked about proceeding with the spinal tap to see if NS shows up in the spinal fluid. I really want to get a firm diagnosis if possible.Guess my first question to you guys who've been there... Is proceeding with the spinal tap the best direction to head?Second question: I read that Fitzgeral at UT Southwestern in Dallas works with pulminary sarc. Do you guys know of any doctors in the Dallas area who have actually seen and worked with neurosarcoidosis?Any input, information, thoughts, etc., are appreciated. I am walking this path alone with the exception of God and you guys. Help!Christy~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Thank Jeanna! I did call Dr. Fitzgerald's office today and got the name of Dr. Gil Wolfe who, from what someone in Dr. Fitzgerald's office told me, has seen their pulminary sarc patients who also have NS. Dr. Wolfe will not see new patients until he has review their records and spoken with the referring physician (guess that is good). So, my neuro- surgeon will be calling him and are sending my records. If I get any positive results, I'll be sure to let you know since you are not too far away from UT Southwestern as well. My NS seems to be in my eyes and has cause major vision loss in my right eye, fortunately has not affected my left eye. I've also lost my sense of smell & taste and experiencing sensation in my tongue. I'll wait to hear from you regarding your neuro-surgeon's recommendation. I was hoping to connect with you since we both live in the North Texas area. Take care and again, thanks for replying. Christy > Christy, I live in Plano and I have hydrocephalus and have been being > treated for neurosarcoidosis since 1995 but was diagnosed at MD . I > saw an opthamologist this week that my neurosurgeon at Presbyterian Plano > wanted me to see and he is now looking into the possibility of MS because of > something that my eyes are not doing that they should be and because of > optic neuritis. The neurosurgeon down here has also been trying to get me > set up to see a good doctor down here for the neurosarcoidosis, I will let > you know what the outcome is and who he suggests, he is a really good > surgeon and really caring so I know he will want me to see someone who knows > their stuff. Your friend in Plano, Jeanna > > -- Seeking Name of Doctor > > Hi... I had a visit with my neuro-surgeon yesterday. We have a > pathology report from Presbyterian Hospital of Dallas & MD > in Houston confirming that a specimen taken from my right optic nerve > area is granulomatous inflammation with benign fibrosis. Report or > stains for acid fast organisms and fungal organisms tested negative. > Also, mycobacterial immunostain tested negative. > > We talked about proceeding with the spinal tap to see if NS shows up > in the spinal fluid. I really want to get a firm diagnosis if > possible. > > Guess my first question to you guys who've been there... Is > proceeding with the spinal tap the best direction to head? > > Second question: I read that Fitzgeral at UT Southwestern in > Dallas works with pulminary sarc. Do you guys know of any doctors in > the Dallas area who have actually seen and worked with > neurosarcoidosis? > > Any input, information, thoughts, etc., are appreciated. I am > walking this path alone with the exception of God and you guys. Help! > > Christy > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Thanks Tracie... I keep re-reading Aisha's article. It has extremely helpful and very informative. Good idea to give a copy to the doctor. You asked if I had any other signs... possibly. A month after my first surgery (12/2002), I had two serious episodes of joint pain in my knees. We did x-rays of my knees which did not indicate any problems and I was referred to a rheumatologist at that time. he ran lots of blood tests and also a whole body gallium scan. Everything came back negative. Other possible signs... vision loss in right eye, numbness in my hands, loss of taste & smell, mouth sensation, facial pain (questionable because I had reconstructive surgery on my face when I was 15), and fatigue (associated it with depression and being a single parent of a soon to be 13 year old). I have also seen an infectious disease doctor who ran lots of tests includign a bone marrow test. All came back negative for the diseases she was checking into. The only test we were not able to do was a TB test. They could not do this test because I was on decadron at the time. I was told that you had to be off the steriods a year before you could have a good TB test. If that is the case then I still have two more months to wait. I appreciate your information and input. I need all of the guidance and help I can get. Again, thanks! Christy > In a message dated 2/12/04 11:20:14 AM Pacific Standard Time, > strickla7@y... writes: > > > > Guess my first question to you guys who've been there... Is > > proceeding with the spinal tap the best direction to head? Christy, a spinal > > tap will only tell them if there is inflammation in the spinal fluid. There > > is yet to be a test that will 100% confirm that you have neurosarc. > > Remember, this is a disease that is diagnosed after all the tests are done that rule > > out the other stuff- like MS, Gullian-Barre, etc. Since they found > > granulomatous disease in the temporal artery, you probably have a working diagnosis > > of " granulomatous disease, of unknown origin " . Do you have any other signs, > > the joint pain, fatigue, exhaustion, dementia, etc? > > > Second question: I read that Fitzgeral at UT Southwestern in > > Dallas works with pulminary sarc. Do you guys know of any doctors in > > the Dallas area who have actually seen and worked with > > neurosarcoidosis? One of our Texans might be able to help-- Fitzgerald is > > the only one listed in Texas. You might want to check around and call an > > infectious disease MD or Immunologists/Rheumatologists. > > > Make sure you go to the website http://www.elderwyn.com/neurosarcoidosis/ > > Reread the info there and take it with you to your appt. This is really good > stuff and at least gets the testing going in the right direction. It also > gives the MD some ideas of different medication choices. > > Hope this helps, > Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Other possible signs... vision loss in right eye, numbness in my hands, loss of taste & smell, mouth sensation, facial pain (questionable because I had reconstructive surgery on my face when I was 15),tHAT had to be tough to go thru at such a young age. It's hard enough to be a teenager, but to have to have reconstructive sx--wow. and fatigue (associated it with depression and being a single parent of a soon to be 13 year old). The fatigue with sarc is so overwhelming. so many days its all I can do to get a shower and get dressed, then take a nap before whatever next happens. Or doesn't happen. I wonder how much of your pain is from the reconstructive sx, when they get in and mess with bones, etc in your face and head- the late effects can be disabling. I had to have several teeth put back in after getting hit in the mouth with a baseball bat, and then 2 yrs later, was in a car accident and had to have a couple re-planted again. I sure know when I've got a sinus infection or inflammation-- the nerves to my teeth always go on rapid alert. Makes it so that I can't do anything at the dentist without first taking large doses of antihistamines to keep the swelling down. Have you searched by typing in "granulomatous disease" in your search engine. There is alot of info out there. Glad I can help, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Other possible signs... vision loss in right eye, numbness in my hands, loss of taste & smell, mouth sensation, facial pain (questionable because I had reconstructive surgery on my face when I was 15),tHAT had to be tough to go thru at such a young age. It's hard enough to be a teenager, but to have to have reconstructive sx--wow. and fatigue (associated it with depression and being a single parent of a soon to be 13 year old). The fatigue with sarc is so overwhelming. so many days its all I can do to get a shower and get dressed, then take a nap before whatever next happens. Or doesn't happen. I wonder how much of your pain is from the reconstructive sx, when they get in and mess with bones, etc in your face and head- the late effects can be disabling. I had to have several teeth put back in after getting hit in the mouth with a baseball bat, and then 2 yrs later, was in a car accident and had to have a couple re-planted again. I sure know when I've got a sinus infection or inflammation-- the nerves to my teeth always go on rapid alert. Makes it so that I can't do anything at the dentist without first taking large doses of antihistamines to keep the swelling down. Have you searched by typing in "granulomatous disease" in your search engine. There is alot of info out there. Glad I can help, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 Hi Christy, >>Guess my first question to you guys who've been there... Is proceeding with the spinal tap the best direction to head? Definately no. Having it done will rule out any other illnesses and you can get the microbacteria tested from your spinal fluid but it won't diagnose NS My neurologist doesn't believe in diagnosing Neurosarcoidosis via a spinal tap. He says that it is just one more piece of the puzzle. Like a blood test or any other fluid test, all it can do is indicate or rule out possibilities There is no 100% test with a spinal fluid analysis that you'll have Neurosarc. No matter what the markers. Even ACE in your spinal fluid can be from other illnesses. I would suggest you start with a MRI of your brain with contrast and pituitary views and at the same time get a MRA (an MRI of your arteries) and a diffusion weighted sequence - which shows up imaging your normal MRI won't I would also suggest you get a Gallium Scan - which is a test that shows up all the inflammation in your body such as an inflamed lymph node or lesion in your brain. This is a whole body scan. Any lesion can be biopsied (Not from your brain - NO brain biopsies! NONE!) Then I would suggest they do a round of blood tests such as ESR, CRP, LFT, ACE, 24 hour urine, ADH, Ca, Biochem, CBC, Fe & TIBC + ferriton, B12 + foliates. If you go ahead with the Spinal, this is the procedure: 1) DRINK lots of fluid before you arrive and make sure you have had a good breakfast. 2) Demand that the Lumbar Puncture (spinal) be done under a fluoroscope or CT machine so that they can see where they are putting the needle. I don't want to scare you, but the needle is the size they would use on a horse. You want it to go into the right spot first go. A radiologist doing this under a CT or fluoroscope is your best bet at minimal pain and perfect procedure. 3) After the Lumbar puncture you need to lay down flat for at least 6 hours. DO NOT LET THEM DISCHARGE YOU. During this time drink as much water as you can. You see, your spinal column is a closed system, no blood goes in there so this is NOT like having a blood test. When they put the needle in, it makes a small hole and this hole does not close for up to 5 days. The more you move around, the more you stress this hole, the more spinal fluid will leak, the less fluid there is to cushion your brain, the bigger headache (and I mean monster flatten you with a truck headache) you will have. Laying down for 6 hours flat gives the hole a chance to close tight before you move, minimizing trauma, minimizing pain. 4) Drinking fluid is essential for the next 3-5 days to replace your bodies lost fluid. 5) Ideally lay flat for up to 5 days, or at least be bed resting for 5 days. 6) Do not lift, twist, bend, stretch, or do anything to reopen this hole. The actual procedure if done under a CT scanner and they can see what they are doing will take about 10 minutes. If not done under a scanner it can take as long as it takes for a doctor to be stabbing your back until they find your spinal column. (Which is not a good idea.) Follow these instructions, and you will go well. Your doctor must order - ALL bacterial cultures including TB cultures - Proteins - Fluid Pressure - ACE level - Lymphocyte Count - MS Banding - but this can show up in MS patients AND NS patients and patients with OTHER diseases so it is NOT a diagnosis for Neurosarcoidosis or MS + General CFS Analysis and whatever I've forgotten Hope that is of some help. Love Aisha. -- Seeking Name of Doctor Hi... I had a visit with my neuro-surgeon yesterday. We have a pathology report from Presbyterian Hospital of Dallas & MD in Houston confirming that a specimen taken from my right optic nerve area is granulomatous inflammation with benign fibrosis. Report or stains for acid fast organisms and fungal organisms tested negative. Also, mycobacterial immunostain tested negative. We talked about proceeding with the spinal tap to see if NS shows up in the spinal fluid. I really want to get a firm diagnosis if possible. Guess my first question to you guys who've been there... Is proceeding with the spinal tap the best direction to head? Second question: I read that Fitzgeral at UT Southwestern in Dallas works with pulminary sarc. Do you guys know of any doctors in the Dallas area who have actually seen and worked with neurosarcoidosis? Any input, information, thoughts, etc., are appreciated. I am walking this path alone with the exception of God and you guys. Help! Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Aisha, Thanks for the information. Every little bit helps. I'll take the information you provided with me to my next appointment (with your medical disclaimer). I've had the whole body gallium scan plus lots of MRIs, CTs and lots of blood work plus a bone marrow test (all performed January & February of 2003). Should be getting the results of the most recent blood work in about two weeks (next appointment with neuro- ophthamologist). Every test that was performed in 2003 (exception of MRI & CT) came back negative. As I indicated, I do have the pathology report from 12/2002 indicating the five specimen taken from my brain surgery showed the benign fibrosis and one indicated the granulomatous inflamation. The microbacteria was tested on the pathology report and it came back negative. I have experienced what seems to be permanent vision loss in my right eye. My neuro-ophthamologist is being very thorough on his tests and examination. I read somewhere about fibrosis developing in cases of chronic NS. Are you familiar with that? Thanks for your time! Christy > Hi Christy, > > >>Guess my first question to you guys who've been there... Is > proceeding with the spinal tap the best direction to head? > > Definately no. Having it done will rule out any other illnesses and you can > get the microbacteria tested from your spinal fluid but it won't diagnose NS > > > My neurologist doesn't believe in diagnosing Neurosarcoidosis via a spinal > tap. He says that it is just one more piece of the puzzle. Like a blood test > or any other fluid test, all it can do is indicate or rule out possibilities > There is no 100% test with a spinal fluid analysis that you'll have > Neurosarc. No matter what the markers. Even ACE in your spinal fluid can be > from other illnesses. > > I would suggest you start with a MRI of your brain with contrast and > pituitary views and at the same time get a MRA (an MRI of your arteries) and > a diffusion weighted sequence - which shows up imaging your normal MRI won't > > > I would also suggest you get a Gallium Scan - which is a test that shows up > all the inflammation in your body such as an inflamed lymph node or lesion > in your brain. This is a whole body scan. > > Any lesion can be biopsied (Not from your brain - NO brain biopsies! NONE!) > > Then I would suggest they do a round of blood tests such as ESR, CRP, LFT, > ACE, 24 hour urine, ADH, Ca, Biochem, CBC, Fe & TIBC + ferriton, B12 + > foliates. > > If you go ahead with the Spinal, this is the procedure: > > 1) DRINK lots of fluid before you arrive and make sure you have had a good > breakfast. > 2) Demand that the Lumbar Puncture (spinal) be done under a fluoroscope or > CT machine so that they can see where they are putting the needle. I don't > want to scare you, but the needle is the size they would use on a horse. You > want it to go into the right spot first go. A radiologist doing this under a > CT or fluoroscope is your best bet at minimal pain and perfect procedure. > 3) After the Lumbar puncture you need to lay down flat for at least 6 hours. > DO NOT LET THEM DISCHARGE YOU. During this time drink as much water as you > can. > > You see, your spinal column is a closed system, no blood goes in there so > this is NOT like having a blood test. When they put the needle in, it makes > a small hole and this hole does not close for up to 5 days. The more you > move around, the more you stress this hole, the more spinal fluid will leak, > the less fluid there is to cushion your brain, the bigger headache (and I > mean monster flatten you with a truck headache) you will have. Laying down > for 6 hours flat gives the hole a chance to close tight before you move, > minimizing trauma, minimizing pain. > > 4) Drinking fluid is essential for the next 3-5 days to replace your bodies > lost fluid. > 5) Ideally lay flat for up to 5 days, or at least be bed resting for 5 days. > > 6) Do not lift, twist, bend, stretch, or do anything to reopen this hole. > > The actual procedure if done under a CT scanner and they can see what they > are doing will take about 10 minutes. If not done under a scanner it can > take as long as it takes for a doctor to be stabbing your back until they > find your spinal column. (Which is not a good idea.) > > Follow these instructions, and you will go well. > > Your doctor must order > - ALL bacterial cultures including TB cultures > - Proteins > - Fluid Pressure > - ACE level > - Lymphocyte Count > - MS Banding - but this can show up in MS patients AND NS patients and > patients with OTHER diseases so it is NOT a diagnosis for Neurosarcoidosis > or MS > + General CFS Analysis and whatever I've forgotten > > > Hope that is of some help. > Love Aisha. > > -- Seeking Name of Doctor > > Hi... I had a visit with my neuro-surgeon yesterday. We have a > pathology report from Presbyterian Hospital of Dallas & MD in > Houston confirming that a specimen taken from my right optic nerve area is > granulomatous inflammation with benign fibrosis. Report or stains for acid > fast organisms and fungal organisms tested negative. Also, mycobacterial > immunostain tested negative. > > We talked about proceeding with the spinal tap to see if NS shows up in the > spinal fluid. I really want to get a firm diagnosis if > possible. > > Guess my first question to you guys who've been there... Is > proceeding with the spinal tap the best direction to head? > > Second question: I read that Fitzgeral at UT Southwestern in Dallas > works with pulminary sarc. Do you guys know of any doctors in the Dallas > area who have actually seen and worked with neurosarcoidosis? > > Any input, information, thoughts, etc., are appreciated. I am > walking this path alone with the exception of God and you guys. Help! > > Christy Quote Link to comment Share on other sites More sharing options...
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