Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hi Karla, welcome to the family. Your story is like so many of ours-- no comfort there huh... One of the biggest challenges with NS Is that it doesn't have definitive tests that show we have it. It truly is a disease that when they've ruled out the other possibilities, this is what we may have. For many of us, we have clear brain scans, we have elevated ACE levels, maybe have elevated ACE in the spinal fluid-- but what we don't have is the protein bands that are conclusive for MS. So- one possibility down! Many of us have done the Neuropsychological tests-- and that showed brain impairment-- often times transient, (comes and goes) and if it is a vasculitis (inflammation of the blood vessels) then the part of our brain that isn't functioning on that day, may be different than tomorrow's problem. What does "help" to get NS diagnosed is if you have a sarcoidosis proven biopsy in another part of the body. Lungs are involved in more than 80% of all sarcoidians-- so that is a choice IF you have a goofy chest xray. If your lungs are clear-- then no reason to have them go in and do a bronchoscopy and take biopsies. I see you are on Immunoglobulins-- I know that is one of the choices that my original Pulmonologist suggested I ask about when my sarcoidosis came back after being "quiet" for 5 yrs. Unfortunately, the local doc felt we could handle it with prednisone. WRONG. That choice gave me diabetes, leached the calcium from my bones, made my joint and muscle pain go thru the roof-- (take away the calcium from your bones and your muscles and ligaments flare) but what the heck did I know. For me, prednisone was not the right choice, and so I ended up going down to Sacramento to get some of UC Professors of Medicine to work out the other options. Plaquenil, Methotrexate and Remicade have been my customized cocktail-- (bummer, no Jack there) but it has worked for the "inside" the bone pain, the systemic sarcoid induced arthritis, the iritis, as well as helping my lungs- until just recently. For some reason, my lungs have decided to go on hiatus-- and I'm developing some pulmonary hypertension. Guess that will be the next chapter. So which of the Igg's are you on? It sounds like you've got some MD's that are at least progressive enough to look past the standard steroid attack. One brownie point for them! Again, glad to have you here-- wish none of us needed to be-- but at least you've found a fantastic bunch of people all trying to find the answers to a condition that has few answers. Sincerely, Tracie NS Co-owner/moderator I am listed as Presumptive Neurosarcoidosis because I do not have a positive biopsy from my brain and my spinal tap was inconclusive. My MRI was flaming positive for an inflammatory process, but the doctors don't know which one. So, they are calling it Neurosarcoid.It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 I am on Gamma Immune Immunoglobulins IV on a 3-1-1 regimen, (3days one month, one day the next month, one day the next month and back to 3 days). I have been alternating with high doses of Methyl prednisone 1000mu on the same 3-1-1 regimen, until this month, when I convinced the doctors that I should try to wean off the steroids for good. We have tried the wean twice before and I crashed both times, but I feel much stronger this time and I think that I can handle it now. I have been on the Immunoglobulins and Cellcept long enough that I feel that I will be okay without any steroids. I have had enough! I, too, have gained 20 pounds and have a cushing-oid face. None of my clothes fit, my shoes even got tight! The nurse practitioner is the one who actually mentioned the IVIG to my doctor as sometime to try because I was so sensitive to the steroids. He agreed right away and I started them last November. I was scared at first because it is a blood product, but now I am sold. It's great. Re: NS diagnosed Hi Karla, welcome to the family. Your story is like so many of ours-- no comfort there huh... One of the biggest challenges with NS Is that it doesn't have definitive tests that show we have it. It truly is a disease that when they've ruled out the other possibilities, this is what we may have. For many of us, we have clear brain scans, we have elevated ACE levels, maybe have elevated ACE in the spinal fluid-- but what we don't have is the protein bands that are conclusive for MS. So- one possibility down! Many of us have done the Neuropsychological tests-- and that showed brain impairment-- often times transient, (comes and goes) and if it is a vasculitis (inflammation of the blood vessels) then the part of our brain that isn't functioning on that day, may be different than tomorrow's problem. What does "help" to get NS diagnosed is if you have a sarcoidosis proven biopsy in another part of the body. Lungs are involved in more than 80% of all sarcoidians- - so that is a choice IF you have a goofy chest xray. If your lungs are clear-- then no reason to have them go in and do a bronchoscopy and take biopsies. I see you are on Immunoglobulins- - I know that is one of the choices that my original Pulmonologist suggested I ask about when my sarcoidosis came back after being "quiet" for 5 yrs. Unfortunately, the local doc felt we could handle it with prednisone. WRONG. That choice gave me diabetes, leached the calcium from my bones, made my joint and muscle pain go thru the roof-- (take away the calcium from your bones and your muscles and ligaments flare) but what the heck did I know. For me, prednisone was not the right choice, and so I ended up going down to Sacramento to get some of UC Professors of Medicine to work out the other options. Plaquenil, Methotrexate and Remicade have been my customized cocktail-- (bummer, no Jack there) but it has worked for the "inside" the bone pain, the systemic sarcoid induced arthritis, the iritis, as well as helping my lungs- until just recently. For some reason, my lungs have decided to go on hiatus-- and I'm developing some pulmonary hypertension. Guess that will be the next chapter. So which of the Igg's are you on? It sounds like you've got some MD's that are at least progressive enough to look past the standard steroid attack. One brownie point for them! Again, glad to have you here-- wish none of us needed to be-- but at least you've found a fantastic bunch of people all trying to find the answers to a condition that has few answers. Sincerely, Tracie NS Co-owner/moderator In a message dated 3/7/2008 9:50:43 P.M. Pacific Standard Time, schell.karla@ yahoo.com writes: I am listed as Presumptive Neurosarcoidosis because I do not have a positive biopsy from my brain and my spinal tap was inconclusive. My MRI was flaming positive for an inflammatory process, but the doctors don't know which one. So, they are calling it Neurosarcoid. It's Tax Time! Get tips, forms and advice on AOL Money Finance. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 I am on Gamma Immune Immunoglobulins IV on a 3-1-1 regimen, (3days one month, one day the next month, one day the next month and back to 3 days). I have been alternating with high doses of Methyl prednisone 1000mu on the same 3-1-1 regimen, until this month, when I convinced the doctors that I should try to wean off the steroids for good. We have tried the wean twice before and I crashed both times, but I feel much stronger this time and I think that I can handle it now. I have been on the Immunoglobulins and Cellcept long enough that I feel that I will be okay without any steroids. I have had enough! I, too, have gained 20 pounds and have a cushing-oid face. None of my clothes fit, my shoes even got tight! The nurse practitioner is the one who actually mentioned the IVIG to my doctor as sometime to try because I was so sensitive to the steroids. He agreed right away and I started them last November. I was scared at first because it is a blood product, but now I am sold. It's great. Re: NS diagnosed Hi Karla, welcome to the family. Your story is like so many of ours-- no comfort there huh... One of the biggest challenges with NS Is that it doesn't have definitive tests that show we have it. It truly is a disease that when they've ruled out the other possibilities, this is what we may have. For many of us, we have clear brain scans, we have elevated ACE levels, maybe have elevated ACE in the spinal fluid-- but what we don't have is the protein bands that are conclusive for MS. So- one possibility down! Many of us have done the Neuropsychological tests-- and that showed brain impairment-- often times transient, (comes and goes) and if it is a vasculitis (inflammation of the blood vessels) then the part of our brain that isn't functioning on that day, may be different than tomorrow's problem. What does "help" to get NS diagnosed is if you have a sarcoidosis proven biopsy in another part of the body. Lungs are involved in more than 80% of all sarcoidians- - so that is a choice IF you have a goofy chest xray. If your lungs are clear-- then no reason to have them go in and do a bronchoscopy and take biopsies. I see you are on Immunoglobulins- - I know that is one of the choices that my original Pulmonologist suggested I ask about when my sarcoidosis came back after being "quiet" for 5 yrs. Unfortunately, the local doc felt we could handle it with prednisone. WRONG. That choice gave me diabetes, leached the calcium from my bones, made my joint and muscle pain go thru the roof-- (take away the calcium from your bones and your muscles and ligaments flare) but what the heck did I know. For me, prednisone was not the right choice, and so I ended up going down to Sacramento to get some of UC Professors of Medicine to work out the other options. Plaquenil, Methotrexate and Remicade have been my customized cocktail-- (bummer, no Jack there) but it has worked for the "inside" the bone pain, the systemic sarcoid induced arthritis, the iritis, as well as helping my lungs- until just recently. For some reason, my lungs have decided to go on hiatus-- and I'm developing some pulmonary hypertension. Guess that will be the next chapter. So which of the Igg's are you on? It sounds like you've got some MD's that are at least progressive enough to look past the standard steroid attack. One brownie point for them! Again, glad to have you here-- wish none of us needed to be-- but at least you've found a fantastic bunch of people all trying to find the answers to a condition that has few answers. Sincerely, Tracie NS Co-owner/moderator In a message dated 3/7/2008 9:50:43 P.M. Pacific Standard Time, schell.karla@ yahoo.com writes: I am listed as Presumptive Neurosarcoidosis because I do not have a positive biopsy from my brain and my spinal tap was inconclusive. My MRI was flaming positive for an inflammatory process, but the doctors don't know which one. So, they are calling it Neurosarcoid. It's Tax Time! Get tips, forms and advice on AOL Money Finance. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Karla, I remember one of the people on our list taking Immunoglobulin.. can't remember who it is.. I was a nurse I had several patients on that med.. Soo, I am familiar with the drug.. Welcome aboard if I haven't already said it.. Hugs, Re: NS diagnosed Hi Karla, welcome to the family. Your story is like so many of ours-- no comfort there huh... One of the biggest challenges with NS Is that it doesn't have definitive tests that show we have it. It truly is a disease that when they've ruled out the other possibilities, this is what we may have. For many of us, we have clear brain scans, we have elevated ACE levels, maybe have elevated ACE in the spinal fluid-- but what we don't have is the protein bands that are conclusive for MS. So- one possibility down! Many of us have done the Neuropsychological tests-- and that showed brain impairment-- often times transient, (comes and goes) and if it is a vasculitis (inflammation of the blood vessels) then the part of our brain that isn't functioning on that day, may be different than tomorrow's problem. What does "help" to get NS diagnosed is if you have a sarcoidosis proven biopsy in another part of the body. Lungs are involved in more than 80% of all sarcoidians- - so that is a choice IF you have a goofy chest xray. If your lungs are clear-- then no reason to have them go in and do a bronchoscopy and take biopsies. I see you are on Immunoglobulins- - I know that is one of the choices that my original Pulmonologist suggested I ask about when my sarcoidosis came back after being "quiet" for 5 yrs. Unfortunately, the local doc felt we could handle it with prednisone. WRONG. That choice gave me diabetes, leached the calcium from my bones, made my joint and muscle pain go thru the roof-- (take away the calcium from your bones and your muscles and ligaments flare) but what the heck did I know. For me, prednisone was not the right choice, and so I ended up going down to Sacramento to get some of UC Professors of Medicine to work out the other options. Plaquenil, Methotrexate and Remicade have been my customized cocktail-- (bummer, no Jack there) but it has worked for the "inside" the bone pain, the systemic sarcoid induced arthritis, the iritis, as well as helping my lungs- until just recently. For some reason, my lungs have decided to go on hiatus-- and I'm developing some pulmonary hypertension. Guess that will be the next chapter. So which of the Igg's are you on? It sounds like you've got some MD's that are at least progressive enough to look past the standard steroid attack. One brownie point for them! Again, glad to have you here-- wish none of us needed to be-- but at least you've found a fantastic bunch of people all trying to find the answers to a condition that has few answers. Sincerely, Tracie NS Co-owner/moderator In a message dated 3/7/2008 9:50:43 P.M. Pacific Standard Time, schell.karla@ yahoo.com writes: I am listed as Presumptive Neurosarcoidosis because I do not have a positive biopsy from my brain and my spinal tap was inconclusive. My MRI was flaming positive for an inflammatory process, but the doctors don't know which one. So, they are calling it Neurosarcoid. It's Tax Time! Get tips, forms and advice on AOL Money Finance. Never miss a thing. Make Yahoo your homepage. No virus found in this incoming message.Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1322 - Release Date: 3/9/2008 12:17 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 Karla, I remember one of the people on our list taking Immunoglobulin.. can't remember who it is.. I was a nurse I had several patients on that med.. Soo, I am familiar with the drug.. Welcome aboard if I haven't already said it.. Hugs, Re: NS diagnosed Hi Karla, welcome to the family. Your story is like so many of ours-- no comfort there huh... One of the biggest challenges with NS Is that it doesn't have definitive tests that show we have it. It truly is a disease that when they've ruled out the other possibilities, this is what we may have. For many of us, we have clear brain scans, we have elevated ACE levels, maybe have elevated ACE in the spinal fluid-- but what we don't have is the protein bands that are conclusive for MS. So- one possibility down! Many of us have done the Neuropsychological tests-- and that showed brain impairment-- often times transient, (comes and goes) and if it is a vasculitis (inflammation of the blood vessels) then the part of our brain that isn't functioning on that day, may be different than tomorrow's problem. What does "help" to get NS diagnosed is if you have a sarcoidosis proven biopsy in another part of the body. Lungs are involved in more than 80% of all sarcoidians- - so that is a choice IF you have a goofy chest xray. If your lungs are clear-- then no reason to have them go in and do a bronchoscopy and take biopsies. I see you are on Immunoglobulins- - I know that is one of the choices that my original Pulmonologist suggested I ask about when my sarcoidosis came back after being "quiet" for 5 yrs. Unfortunately, the local doc felt we could handle it with prednisone. WRONG. That choice gave me diabetes, leached the calcium from my bones, made my joint and muscle pain go thru the roof-- (take away the calcium from your bones and your muscles and ligaments flare) but what the heck did I know. For me, prednisone was not the right choice, and so I ended up going down to Sacramento to get some of UC Professors of Medicine to work out the other options. Plaquenil, Methotrexate and Remicade have been my customized cocktail-- (bummer, no Jack there) but it has worked for the "inside" the bone pain, the systemic sarcoid induced arthritis, the iritis, as well as helping my lungs- until just recently. For some reason, my lungs have decided to go on hiatus-- and I'm developing some pulmonary hypertension. Guess that will be the next chapter. So which of the Igg's are you on? It sounds like you've got some MD's that are at least progressive enough to look past the standard steroid attack. One brownie point for them! Again, glad to have you here-- wish none of us needed to be-- but at least you've found a fantastic bunch of people all trying to find the answers to a condition that has few answers. Sincerely, Tracie NS Co-owner/moderator In a message dated 3/7/2008 9:50:43 P.M. Pacific Standard Time, schell.karla@ yahoo.com writes: I am listed as Presumptive Neurosarcoidosis because I do not have a positive biopsy from my brain and my spinal tap was inconclusive. My MRI was flaming positive for an inflammatory process, but the doctors don't know which one. So, they are calling it Neurosarcoid. It's Tax Time! Get tips, forms and advice on AOL Money Finance. Never miss a thing. Make Yahoo your homepage. No virus found in this incoming message.Checked by AVG. Version: 7.5.518 / Virus Database: 269.21.7/1322 - Release Date: 3/9/2008 12:17 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 I had IgG treatment once with no known affect. It did not hurt and it did not help me as far as I know. I was really looking forward to the benefits of the new treatment. I was disappointed when my immune system did not respond favorably. Ron It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 I had IgG treatment once with no known affect. It did not hurt and it did not help me as far as I know. I was really looking forward to the benefits of the new treatment. I was disappointed when my immune system did not respond favorably. Ron It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 The doctor told me that you would either feel it immediately or it would make no difference. I felt it the very next day. I got up for the first time in a year and cleaned my house. It was great! I had energy. It was really weird, but great. Now I can tell when it is time to have another treatment. I start to get sluggish and want to sleep all day. After the treatment, I am a different person. Re: NS diagnosed I had IgG treatment once with no known affect. It did not hurt and it did not help me as far as I know. I was really looking forward to the benefits of the new treatment. I was disappointed when my immune system did not respond favorably. Ron It's Tax Time! Get tips, forms and advice on AOL Money Finance.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 The doctor told me that you would either feel it immediately or it would make no difference. I felt it the very next day. I got up for the first time in a year and cleaned my house. It was great! I had energy. It was really weird, but great. Now I can tell when it is time to have another treatment. I start to get sluggish and want to sleep all day. After the treatment, I am a different person. Re: NS diagnosed I had IgG treatment once with no known affect. It did not hurt and it did not help me as far as I know. I was really looking forward to the benefits of the new treatment. I was disappointed when my immune system did not respond favorably. Ron It's Tax Time! Get tips, forms and advice on AOL Money Finance.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 I used to feel that way with IVIG treatments. Then I got really sick while having a treatment and they switched to Remicade. I feel the same as you. Very tired a few days before I am due and then the day after I feel like I was zapped by the energizer bunny! I know some of you get tired after their treatments but I get the opposite effect. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 I used to feel that way with IVIG treatments. Then I got really sick while having a treatment and they switched to Remicade. I feel the same as you. Very tired a few days before I am due and then the day after I feel like I was zapped by the energizer bunny! I know some of you get tired after their treatments but I get the opposite effect. - Quote Link to comment Share on other sites More sharing options...
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