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Results of 5th repeat brain MRI
My neuro called today to give me the results of my fifth repeat brain MRI since the attack in 2006. Like the other fouu before it it showed no change in the lesions and no new lesion. This marks the two and a half year mark since the onset of symptoms. I guess they have been scanning me every six months to look for new lesions but none have been seen. Also no obvious new clinical relapse. The VEP was repeated about a month ago, I had one in 2006 that came back possitive, but this new one came back negative, even better than normal my neuro said.
Meanwhile, I went back to follow up with the Rheumy. She got my x-rays back of the knees and hips. My knees looked normal, which was shocking to me because they crack and grind like an old womens, but my right hip showed some degeneration that was concerning to her so she is ordering more extensive hip x-rays.
While I was there she had some more blood drawn. She had already checked me for the Sjogren's antibodies which both came back negative and also an ANA, also negative. She says that I do have arthritis, but wants to see what kind it is and if it is inflammatory kind. Also she is looking for any inflammation in the body with these test she says. There is quite a few and not really sure what all of them are for. Here is a list of them..
Coapleaent C3, Serum
Coapleaent C4, Serum
Anti-dsDNA Antibodies
Sjogren's Ah, Anti-SS-A / -SS-B
HLA B 27 Disease Association
Rheumatoid Arthritis Factor
Sed Rate, Westergren
CRP
FANA
Histone
And one more I cannot read.
She said that some patients have to followed into the future to find answers and I am just one of those patients with her.
She also said these blood test may rule out some things. Can anyone tell me what all of these are checking for.
I go back to my neuro on Sept, 18th for a check up and explaination of Test results.
OH , Yeah, had some more changes in my vision this week. The blind area is still shrinking and now I am seeing things around the spot like colors, leaves, objects that I could not see before. They are still kind of ghostly but I do see them there. Has anyone else's vision came back in this way and so slowly? My stepson received IV steriods and his vision is back to normal in less than two months, no more double vison. Is the reason my vision has been so slow to recover because I didn't get steriods? Does anyone know about this?
~Santana~
Meanwhile, I went back to follow up with the Rheumy. She got my x-rays back of the knees and hips. My knees looked normal, which was shocking to me because they crack and grind like an old womens, but my right hip showed some degeneration that was concerning to her so she is ordering more extensive hip x-rays.
While I was there she had some more blood drawn. She had already checked me for the Sjogren's antibodies which both came back negative and also an ANA, also negative. She says that I do have arthritis, but wants to see what kind it is and if it is inflammatory kind. Also she is looking for any inflammation in the body with these test she says. There is quite a few and not really sure what all of them are for. Here is a list of them..
Coapleaent C3, Serum
Coapleaent C4, Serum
Anti-dsDNA Antibodies
Sjogren's Ah, Anti-SS-A / -SS-B
HLA B 27 Disease Association
Rheumatoid Arthritis Factor
Sed Rate, Westergren
CRP
FANA
Histone
And one more I cannot read.
She said that some patients have to followed into the future to find answers and I am just one of those patients with her.
She also said these blood test may rule out some things. Can anyone tell me what all of these are checking for.
I go back to my neuro on Sept, 18th for a check up and explaination of Test results.
OH , Yeah, had some more changes in my vision this week. The blind area is still shrinking and now I am seeing things around the spot like colors, leaves, objects that I could not see before. They are still kind of ghostly but I do see them there. Has anyone else's vision came back in this way and so slowly? My stepson received IV steriods and his vision is back to normal in less than two months, no more double vison. Is the reason my vision has been so slow to recover because I didn't get steriods? Does anyone know about this?
~Santana~
Well, tomarrow I go to see my neuro to see what he has to say about this 5th repeat brain MRI showing no new lesions. He has already told me that he didn't think this was MS and I asked why does he think that it is not. His answer was that as severe of an onset that I had, it seems unlikely that I would not have any thing new going on in two and a half years.
He said that there was other reasons, not sure what they all are but will ask in detail tomorrow at my appt. I was thinking that the neuro before him that moved told me that the open heart surgery to fix a birth defect that I had when I was 18 months old could have been when these lesions happened. That is because I was put on a heart and lung machine during the surgery and for about 24 hours afterwards. This has been known and documented as a cause of brain lesions in the literature, but he couldn't explain what happened in April 2006, when I suddenly had neurological disfunction and sudden vision disturbance. I want to ask more about this.
Maybe it is possible that I have had these lesions all of my life and I may have some other kind of illness that has caused all of these symptoms. This plus a whole lot more to talk to him about. I am going to be interested in seeing what he has to say now. I will let you all know after the appt. tommorow.
~Santana~
He said that there was other reasons, not sure what they all are but will ask in detail tomorrow at my appt. I was thinking that the neuro before him that moved told me that the open heart surgery to fix a birth defect that I had when I was 18 months old could have been when these lesions happened. That is because I was put on a heart and lung machine during the surgery and for about 24 hours afterwards. This has been known and documented as a cause of brain lesions in the literature, but he couldn't explain what happened in April 2006, when I suddenly had neurological disfunction and sudden vision disturbance. I want to ask more about this.
Maybe it is possible that I have had these lesions all of my life and I may have some other kind of illness that has caused all of these symptoms. This plus a whole lot more to talk to him about. I am going to be interested in seeing what he has to say now. I will let you all know after the appt. tommorow.
~Santana~
SB - Though being in limboland is truly AWFUL - it sounds as if your rheumie is really on the ball. This is something to be grateful for, as there are many out there (just like neuros) that arent very interested in looking for less common conditions. And not only can your blood work show some things, in can rule out some things as well.
It sounds as if you really lucked out in the doctor dept...trust me, spend a little time on any lupus forum, and you will hear one story after another of them not running any extra tests to get to the bottom of peoples problems.
Good luck and let us know how you make out!
Lauri
It sounds as if you really lucked out in the doctor dept...trust me, spend a little time on any lupus forum, and you will hear one story after another of them not running any extra tests to get to the bottom of peoples problems.
Good luck and let us know how you make out!
Lauri
Heather - I think that is a great idea. I'll work on that when I get a chance. I also will include the MS mimic blood panel that my new neuro just ordered.
Lauri- Thanks...I'm in Limboland..still..but hoping for a DX soon. I have a lot of autoimmune diseases that run in the family. I've recently had some of these blood test on Santana's list, especially the ones related to Lupus.
Lauri- Thanks...I'm in Limboland..still..but hoping for a DX soon. I have a lot of autoimmune diseases that run in the family. I've recently had some of these blood test on Santana's list, especially the ones related to Lupus.
That is great news. I'm glad that you have found someone that is willing to put the puzzle together. I just recently had a lot of these blood test. I have an internist and a new neuro so I'm hoping between the two I'll get some answers.
I think (but this is only a guess), that my mother's Sjogrens did get involved with her CNS once. She stopped being able to urinate. It occurred for over a week and she had to self catheterize. The doctors could not figure out the cause as to why this happened. She had no infection or any apparent cause so my guess was possibly the Sjogrens. I only guessed this because that goes with MS and CNS involvement and Sjogrens is a mimic when it does go in the CNS. It did resolve on it's own and she hasn't had that problem for years.
Please keep us informed and do hang in there. We are all pulling for you!
I think (but this is only a guess), that my mother's Sjogrens did get involved with her CNS once. She stopped being able to urinate. It occurred for over a week and she had to self catheterize. The doctors could not figure out the cause as to why this happened. She had no infection or any apparent cause so my guess was possibly the Sjogrens. I only guessed this because that goes with MS and CNS involvement and Sjogrens is a mimic when it does go in the CNS. It did resolve on it's own and she hasn't had that problem for years.
Please keep us informed and do hang in there. We are all pulling for you!
Thank you so much for the info on these test, it helps a lot! The Rheumy said that she wouldn't ordinarily run all of these test, but with the dry eye , Meibomian Gland Dysfunction, and Blepharitis that seems to continue to attack my eyes She wanted to be sure to do every test to rule out inflammation related to auto immune disease. I ask her if the 10 white matter lesions that I had from the first attack could have been CNS Sjogren's and she didn't think so because that the description on the MRI reports of the lesions is not typically what they see in this. She said that it usually shows brain shrinkage, and it is really rare also. She didn't say definately not but doubted it.
She did say that I do have Sjogren's syndrome simply because I have severe dry eyes and mild dry mouth and a dry cough, but that there can be a lot of causes of having the syndrome besides auto immune, such as medications and other things. So just because I have these symptoms does not mean that I have CNS involvement.
She said that I had been stuck for too long and she wanted to check everything that could lead to an auto immune process going on. She agrees with the neuro that this could have been ADEM or a reaction to the SSRI change that I had six weeks prior to the onset.
She said basically that I am a Puzzle, but that Rheumies like puzzles. Funny at first I thought she was not going to be any good, and thought about not going back to see her, but she surprised me!
After seeing my stepson's Spinal tap results and seeing how elevated everything was and the definite > 5 O bands on his report and comparing it to mine which showed nothing abnormal and O O bands I am starting to think that he and I have two entirely differnt things going on. Especially the fact that nothing new is showing up on brain MRI, maybe I did have ADEM, Or if it is MS, maybe it is mild, I just don't know what to think. My neuro who is an MS specialist doesn't think I have MS, but will only say that my working dx is an immune response to an unknown trigger. The Rheumy told me that this is what they say when they don't know yet.
Anyway I see him on thursday, and I am going to have a lot of questions for him. I will let everyone know what he has to say. Sorry everyone that I haven't been on a lot lately, I have been stressed out with it all, but I am trying to hang in there!
~Santana~
She did say that I do have Sjogren's syndrome simply because I have severe dry eyes and mild dry mouth and a dry cough, but that there can be a lot of causes of having the syndrome besides auto immune, such as medications and other things. So just because I have these symptoms does not mean that I have CNS involvement.
She said that I had been stuck for too long and she wanted to check everything that could lead to an auto immune process going on. She agrees with the neuro that this could have been ADEM or a reaction to the SSRI change that I had six weeks prior to the onset.
She said basically that I am a Puzzle, but that Rheumies like puzzles. Funny at first I thought she was not going to be any good, and thought about not going back to see her, but she surprised me!
After seeing my stepson's Spinal tap results and seeing how elevated everything was and the definite > 5 O bands on his report and comparing it to mine which showed nothing abnormal and O O bands I am starting to think that he and I have two entirely differnt things going on. Especially the fact that nothing new is showing up on brain MRI, maybe I did have ADEM, Or if it is MS, maybe it is mild, I just don't know what to think. My neuro who is an MS specialist doesn't think I have MS, but will only say that my working dx is an immune response to an unknown trigger. The Rheumy told me that this is what they say when they don't know yet.
Anyway I see him on thursday, and I am going to have a lot of questions for him. I will let everyone know what he has to say. Sorry everyone that I haven't been on a lot lately, I have been stressed out with it all, but I am trying to hang in there!
~Santana~
SB -
Great job on the blood test descriptions! I have SLE so I am all too familiar with these tests. You are right in that the blood tests for lupus (and other AIDs) can fluctuate. Particularly the ANA, which can be positive one month and neg the next, borderline the next. Traditional GP's and some rheumies will not even consider lupus unless the ANA is positive. This is beginning to change, as they are now realizing how often people's ANA result can change. Also, appx 5% of lupus patients have a negative ANA. This is called sero-negative lupus, or ANA-negative lupus. The thought now is that of these 5%, some will go on to eventually have a positive ANA.
Therefore, do not let a doctor say to you, "You dont have lupus, because your ANA is negative" A positive ANA is only ONE of the four out of 11 criteria needed to Dx lupus.
I am passionate about this subject as I was dismissed for YEARS due to a negaive ANA. At that time, however, my other blood work was normal as well. Eventually, my blood work became more abnormal, and pointed to lupus (low complement levels - C3 and C4, elevated CRP and sed rate, etc) I was finally Dxd this year, after a very long time being sick.
One thing I will add to the list is that the anti-DNA (or double stranded DNA) is specific to lupus. Meaning, it can be the "clincher" for Dx. This test, unlike the others, will ONLY be positive in lupus, thus, if one is pos for this, chances are very good they have lupus.
SB - Do you have lupus as well? Or another autoimmune disease? Or are you like the rest of us who are or have been, in limboland?
Thanks for all the great info.
Lauri
Great job on the blood test descriptions! I have SLE so I am all too familiar with these tests. You are right in that the blood tests for lupus (and other AIDs) can fluctuate. Particularly the ANA, which can be positive one month and neg the next, borderline the next. Traditional GP's and some rheumies will not even consider lupus unless the ANA is positive. This is beginning to change, as they are now realizing how often people's ANA result can change. Also, appx 5% of lupus patients have a negative ANA. This is called sero-negative lupus, or ANA-negative lupus. The thought now is that of these 5%, some will go on to eventually have a positive ANA.
Therefore, do not let a doctor say to you, "You dont have lupus, because your ANA is negative" A positive ANA is only ONE of the four out of 11 criteria needed to Dx lupus.
I am passionate about this subject as I was dismissed for YEARS due to a negaive ANA. At that time, however, my other blood work was normal as well. Eventually, my blood work became more abnormal, and pointed to lupus (low complement levels - C3 and C4, elevated CRP and sed rate, etc) I was finally Dxd this year, after a very long time being sick.
One thing I will add to the list is that the anti-DNA (or double stranded DNA) is specific to lupus. Meaning, it can be the "clincher" for Dx. This test, unlike the others, will ONLY be positive in lupus, thus, if one is pos for this, chances are very good they have lupus.
SB - Do you have lupus as well? Or another autoimmune disease? Or are you like the rest of us who are or have been, in limboland?
Thanks for all the great info.
Lauri
Your list needs to be included on the Health Pages. Possibly adding some more of the common blood tests all of us go through on our way to some diagnosis.
Great job of getting this providing this information "SB." I understand it more myself now.
Please think of posting this on the Health Pages. Great info.
heather
Great job of getting this providing this information "SB." I understand it more myself now.
Please think of posting this on the Health Pages. Great info.
heather
Hey, this is a really good list, it has a bunch of stuff on it that they are testing me for as well... thanks for the great info!
~Sunnytoday~
~Sunnytoday~
Hi girl,
I hope everything starts to slow down for you. You have been getting hit lately. As for your blood test....
C3, C4, Anti-dsDNA Antibodies...if C3 or C4 is decrease, it could mean Lupus. Vasculitis also has decrease levels as well. The Anti-dsDNA Antibodies is a specific test for Lupus.
Sjogren syndrome's Ah, Anti-SS-A / -SS-B ...Is checking for Sjogrens. I'll remind you that my mother has Sjogrens but did not come up positive for these test.
HLA B 27 Disease Association...HLA-B27 is strongly associated with ankylosing spondylitis (Marie-Strumpell disease). HLA-B27 shares homology with a Klebsiella protein and may imply a bacterial pathogenesis to ankylosing spondylitis. A patient with consistent clinical and radiographic findings who is B27-positive has a greater chance of having or developing ankylosing spondylitis than a negative patient.
Rheumatoid Arthritis Factor..high levels of rheumatoid factor can indicate if you have RA or can point to several autoimmune diseases.
Sed Rate, Westergren...A high sed rate will indicate inflammation in the body caused by an autoimmune, infection, etc..
CRP...A C-reactive protein (CRP) test is a blood test that measures the amount of a protein called C-reactive protein in your blood. C-reactive protein measures general levels of inflammation in your body.
FANA...The Fluorescent Antinuclear Antibody (FANA) (sometimes abbreviated to ANA) test is a blood test used to search for the presence of abnormal antibodies. These abnormal antibodies, called autoantibodies, bind to components of the person’s own cells calls “antigens,” causing the immune system to attack the body in an effort to combat disease. This test is pretty much to test for autoimmune such as SLE, Sjogrens, etc...
Histone...checks for Lupus. People with SLE or drug-induced lupus may make antibodies to certain histones.
It sounds like most of the test they are checking you for related to a autoimmune disease process such as, SLE, Sjogrens..being the top 2. I hope you get some answers soon on what is going on. Most of the test for Lupus that I've read about, the blood test will go to normal levels when the disease "remitts", but then you will have abnormal results when the disease is actively attacking. So lupus is hard to DX because of this.
I hope this helps
I hope everything starts to slow down for you. You have been getting hit lately. As for your blood test....
C3, C4, Anti-dsDNA Antibodies...if C3 or C4 is decrease, it could mean Lupus. Vasculitis also has decrease levels as well. The Anti-dsDNA Antibodies is a specific test for Lupus.
Sjogren syndrome's Ah, Anti-SS-A / -SS-B ...Is checking for Sjogrens. I'll remind you that my mother has Sjogrens but did not come up positive for these test.
HLA B 27 Disease Association...HLA-B27 is strongly associated with ankylosing spondylitis (Marie-Strumpell disease). HLA-B27 shares homology with a Klebsiella protein and may imply a bacterial pathogenesis to ankylosing spondylitis. A patient with consistent clinical and radiographic findings who is B27-positive has a greater chance of having or developing ankylosing spondylitis than a negative patient.
Rheumatoid Arthritis Factor..high levels of rheumatoid factor can indicate if you have RA or can point to several autoimmune diseases.
Sed Rate, Westergren...A high sed rate will indicate inflammation in the body caused by an autoimmune, infection, etc..
CRP...A C-reactive protein (CRP) test is a blood test that measures the amount of a protein called C-reactive protein in your blood. C-reactive protein measures general levels of inflammation in your body.
FANA...The Fluorescent Antinuclear Antibody (FANA) (sometimes abbreviated to ANA) test is a blood test used to search for the presence of abnormal antibodies. These abnormal antibodies, called autoantibodies, bind to components of the person’s own cells calls “antigens,” causing the immune system to attack the body in an effort to combat disease. This test is pretty much to test for autoimmune such as SLE, Sjogrens, etc...
Histone...checks for Lupus. People with SLE or drug-induced lupus may make antibodies to certain histones.
It sounds like most of the test they are checking you for related to a autoimmune disease process such as, SLE, Sjogrens..being the top 2. I hope you get some answers soon on what is going on. Most of the test for Lupus that I've read about, the blood test will go to normal levels when the disease "remitts", but then you will have abnormal results when the disease is actively attacking. So lupus is hard to DX because of this.
I hope this helps
Well, the MRI showing nothing new again was really good news already, but hopefully the bloodwork whatever they are for will bring good news too, lol Thanks for the prayers we can never have enough prayers. I will be praying for you also! What has been going on with you lately, sorry I am a little behind, I think I got the Two and a half years and I'm over it syndrome,(smile). No for real, I have had a lot on my plate lately but finally I am starting to get some rest at least for now! You changed your picture, this one looks really good and now I can see your face better.
~Santana~
~Santana~
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