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Slightly Broken / All / Results from Reumy blood work!
Slightly Broken and For all of you who read and responded to my previous post about the blood work up my Rheumy done last week. I got the results back today and all test were normal.
Also saw my Neuro today and he stated again that he did not believe that I fit the picture for an MS DX. He had received the copy of the first VEP that was done in 2006, he showed it to me and said that the wave forms were not clear and it was almost unreadable, and that he could not see a definite deficeit that indicated ON on this first test.
Then he went on to say that the second VEP done a month ago was most definaltely normal, so he dosen't see any evidence that I have ever had ON, and that usually once you have had ON that the damage always shows up on any future VEP's. So I asked then what made my vision go haywire. He said most likely the large lesions in the Parietal lobes or the ones in the Occitipal lobes, probally from the radiations that run through these parts of the brain. This supports the theory that I have traced through my studies of the parts of the brain and thier functions. The exact visual field defect, which is not really a common one can be caused from lesions deep in either Parietal lobe.
Then I threw in the theory about the open heart surgery I had as a small child and being on the heart and lung machine for 24 hours even after this surgery was completed. I asked if I could have gotten these lesions then and the vision disfunction might have just been a drug reaction from the medication change that I had 6 weeks prior to the onset. He asked, well did you always have this visual field defect, and I said no not until this attack. He said then those lesions occured the same time that the visual field defect did because they are the cause of the visual field defect.
He went on to say that two and a half years with out anything new after the severe onset I had, did not match up. That this kind of onset would indicate a much more progressive case of MS, which definalely is not happening. He said my severe onset and numerous amount of lesions happening all at once was more consistant with ADEM or an over reaction of my immune system to some kind of trigger. He said the fact that I have had a monophasic course supports this dx even more!
I asked about Sjogren's and he said that he did not think it was any type of vasculitis illness which Sjogren's and Lupus both fit into, and that they are usually chronic and continuing. He also said no to ischemic lesions, so I asked the million dollar question: How do you tell the difference in ischemic lesions and demyelinating lesions.
He said most of all from the location of the lesion and the appearance had a lot to do with it also, along with other things.
So all of this from him coupled with all of the negative blood test results from my Rheumy has pretty much put to rest at least for now the main mimics that I was looking into as possible causes. I even asked about a possible medication reaction with the abrupt switching of the SSRI's that I suspected. He said anything is possible but that was unlikely in his opinion.
He went on to say again that he did not think this was MS, and if it was it would have to be a very mild case, but he didn't think so. He didn't recommend going on DMD's, His suggestion was to wait unless there is something active proven to treat. He wants to see me in six months, but said if I am still stable we probally won't do another MRI for a year. He added that the improvement that I am having with my vision was proof of the brain healing and that it could keep healing even for years.
OPPINIONS NEEDED PLEASE!
~Santana~
Also saw my Neuro today and he stated again that he did not believe that I fit the picture for an MS DX. He had received the copy of the first VEP that was done in 2006, he showed it to me and said that the wave forms were not clear and it was almost unreadable, and that he could not see a definite deficeit that indicated ON on this first test.
Then he went on to say that the second VEP done a month ago was most definaltely normal, so he dosen't see any evidence that I have ever had ON, and that usually once you have had ON that the damage always shows up on any future VEP's. So I asked then what made my vision go haywire. He said most likely the large lesions in the Parietal lobes or the ones in the Occitipal lobes, probally from the radiations that run through these parts of the brain. This supports the theory that I have traced through my studies of the parts of the brain and thier functions. The exact visual field defect, which is not really a common one can be caused from lesions deep in either Parietal lobe.
Then I threw in the theory about the open heart surgery I had as a small child and being on the heart and lung machine for 24 hours even after this surgery was completed. I asked if I could have gotten these lesions then and the vision disfunction might have just been a drug reaction from the medication change that I had 6 weeks prior to the onset. He asked, well did you always have this visual field defect, and I said no not until this attack. He said then those lesions occured the same time that the visual field defect did because they are the cause of the visual field defect.
He went on to say that two and a half years with out anything new after the severe onset I had, did not match up. That this kind of onset would indicate a much more progressive case of MS, which definalely is not happening. He said my severe onset and numerous amount of lesions happening all at once was more consistant with ADEM or an over reaction of my immune system to some kind of trigger. He said the fact that I have had a monophasic course supports this dx even more!
I asked about Sjogren's and he said that he did not think it was any type of vasculitis illness which Sjogren's and Lupus both fit into, and that they are usually chronic and continuing. He also said no to ischemic lesions, so I asked the million dollar question: How do you tell the difference in ischemic lesions and demyelinating lesions.
He said most of all from the location of the lesion and the appearance had a lot to do with it also, along with other things.
So all of this from him coupled with all of the negative blood test results from my Rheumy has pretty much put to rest at least for now the main mimics that I was looking into as possible causes. I even asked about a possible medication reaction with the abrupt switching of the SSRI's that I suspected. He said anything is possible but that was unlikely in his opinion.
He went on to say again that he did not think this was MS, and if it was it would have to be a very mild case, but he didn't think so. He didn't recommend going on DMD's, His suggestion was to wait unless there is something active proven to treat. He wants to see me in six months, but said if I am still stable we probally won't do another MRI for a year. He added that the improvement that I am having with my vision was proof of the brain healing and that it could keep healing even for years.
OPPINIONS NEEDED PLEASE!
~Santana~
Well, you nailed my feelings right now exactly! I am relieved that nothing new has shown up in two and a half years, but realize that there have many here who went years before anything new happened. Not the Norm, but it happens. Either way, I think the main thing I am dealing with right now is how to put my shattered life back together into some kind of order that makes sense. I literally feel as though I have been missing from my own life for this period of time. I feel lost, not sure what to do next. Raising my kids is all that has kept me sane, and also my trust in God!
My physiciatrist says I am in post traumatic stress syndrome. Now that the worst of the storm has blown by, all there is left to do is clean up the debre. Now, it is finally hitting me what exactly it is that I just lived through and my faith and security in all that I trusted has been shaken to the ends of the earth. That is how I feel, but I am slowly creeping back into my life, eventhough it is a lot different now.
Don't worry I am not leaving, I couldn't do that now this is my home and you all are my friends. Besides, I have not been solved yet, lol!!!!!
How did your headache get. Is it gone? If you didn't lie still afterwards for long enough that may have been why you got it. I didn't get one but I laid still for 24 hours after mine. I just pulled a matress into the living room and there I stayed until the next day. Also my neuro said he was using a smaller needle to lessen the chance of a headache, so this could have been a cause if the needle they used on you was too big, just guessing here!
Have they figured out anything about what is going on with you? I'm sorry, I am way behind, but the past couple months have been a struggle for me and I have had to take some time off of the forum to sort out my thoughts and feelings, and I know you all understand this.
I am starting to feel like posting again and I am still reading the post, I am trying to get back to normal or at least as close as I can.
Your friend
~Santana~
My physiciatrist says I am in post traumatic stress syndrome. Now that the worst of the storm has blown by, all there is left to do is clean up the debre. Now, it is finally hitting me what exactly it is that I just lived through and my faith and security in all that I trusted has been shaken to the ends of the earth. That is how I feel, but I am slowly creeping back into my life, eventhough it is a lot different now.
Don't worry I am not leaving, I couldn't do that now this is my home and you all are my friends. Besides, I have not been solved yet, lol!!!!!
How did your headache get. Is it gone? If you didn't lie still afterwards for long enough that may have been why you got it. I didn't get one but I laid still for 24 hours after mine. I just pulled a matress into the living room and there I stayed until the next day. Also my neuro said he was using a smaller needle to lessen the chance of a headache, so this could have been a cause if the needle they used on you was too big, just guessing here!
Have they figured out anything about what is going on with you? I'm sorry, I am way behind, but the past couple months have been a struggle for me and I have had to take some time off of the forum to sort out my thoughts and feelings, and I know you all understand this.
I am starting to feel like posting again and I am still reading the post, I am trying to get back to normal or at least as close as I can.
Your friend
~Santana~
Wow, just finished reading this, and WOW. What a few years there, Santana. I think if i were you I wouldn't know if i should feel relieved, happy, or afraid of the future becuase the past hasn't been exactly explained.
I truly do hope that this neuro knows what he's talking about and that this Monster that hit you once will never reappear.
Do stick around.... what would we do without you?
I hope you have a wonderful Tuesday evening....
HUGS
~Sunnytoday~
I truly do hope that this neuro knows what he's talking about and that this Monster that hit you once will never reappear.
Do stick around.... what would we do without you?
I hope you have a wonderful Tuesday evening....
HUGS
~Sunnytoday~
Slightly broken, You did not offend me at all, you are a very caring and true friend to me and your input is always welcome with me.
Sllowe, To answer your question about how they know these lesions all happened at the same time. I will briefly breakdown the steps if I can:
April, 2006- severe onset/ attack
It took five months to get the eye doctors to believe that I couldn't see good and to do a visual field test which was done in the first week of Sept, 2006 and showed an inferior homonyous quadrantopia, which means loss of vision of one of the four quadrants of the vision field in both eyes, or in my case both sides of the brain. This finally prompted them to believe me, eventhough my visual exams were completely normal and I had 20/20 VA. I guess they realized that this was brain related. So I was finally refered to a Neuro.
1st Neuro done MRI without contrast which showed numerous white matter lesions in the body of the Slend of the Corpus Callosum, bilaterally in the perventricular white matter of the frontal, temoral, and Parietal lobes, worse on the right side.
He also done A VEP which I never saw, but was told by this first neuro that it was possitive for slowing in one side.
This neuro didn't feel the need to do other testing and DX me with MS and sent me away with a bag of Rebiff to start. He had not even taken a blood test and I wanted more testing, so I got a second oppinion.
2nd Neuro- Done all bloodwork- negative, LP- negative and showed no O banding, another MRI this time with/ without contrast done two months after the first MRI was done- showed no change in the lesions, no new lesions and no enhancement. This Neuro said my Dx for now is ADEM. He done repeat MRI's every six months to look for new lesions or enhancement or any kind of change- No change. He left the state to practice in Memphis, so I was refered to one of the other neuros in his office.
3rd Neuro- Head of the MS clinic in the Brain and Spine Inst. at UT hospital.
I have had two visits with him. He repeated the VEP which is now showing definately normal. He did the fifth repeat MRI with/without contrast- Again showed no change in the lesions, no new lesions and no enhancement.
The explaination of what he said is above in my origional post.
Rheumy- I went to because of my suspicion of Sjogren's. She is the one who ran all of these blood test to look for other causes and to rule Sjogren's in or out. She found that the antibodies for Sjogren's were negative both times she has tested them. All other blood test were negative.
Double Vision, Yeah, I am going to stay on top of it and make sure he continues to do repeat MRI's at least once a year, which he is already doing. Congrats on you getting back behind the wheel, I know that must be great, I am so happy for you!
Deb, You are right, nothing about my case has added up and I think that is the problem,lol, No seriously though, the spinal fluid may have shown something bacterial had it not taken those stupid first doctors eight months to get me to a NEURO. Eight months after onset, I am thinking that anything that was abnormal as far as bacterial or viral would have been cleared out by the time I got the LP? Now as for why he thinks that the VEP would stay possitive after any event of ON, That I don't know, but he did have a copy of the VEP done in 2006 on hand for my visit the other day. He showed it to me and said it wasn't clear and was hard to read and not reliable. But he stated that the repeat VEP that he done a couple weeks ago was most definately normal. He did say that once you have an episode of ON that the VEP will usually show the damage from the past ON on repeat VEP's
The blood clotting disorder is the Factor V leiden, but I only have one copy of the gene wich is a slight defect in the gene according to my hematologist who put me on one baby asprin a day for precaution only.
Both neuros said that they didn't think the Factor V was related to the attack or that My lesions were ischemic.
Yes, I had an LP in Nov, 2006 and it was negative, and showed No O banding.
Hugs to you all
~Santana~
Sllowe, To answer your question about how they know these lesions all happened at the same time. I will briefly breakdown the steps if I can:
April, 2006- severe onset/ attack
It took five months to get the eye doctors to believe that I couldn't see good and to do a visual field test which was done in the first week of Sept, 2006 and showed an inferior homonyous quadrantopia, which means loss of vision of one of the four quadrants of the vision field in both eyes, or in my case both sides of the brain. This finally prompted them to believe me, eventhough my visual exams were completely normal and I had 20/20 VA. I guess they realized that this was brain related. So I was finally refered to a Neuro.
1st Neuro done MRI without contrast which showed numerous white matter lesions in the body of the Slend of the Corpus Callosum, bilaterally in the perventricular white matter of the frontal, temoral, and Parietal lobes, worse on the right side.
He also done A VEP which I never saw, but was told by this first neuro that it was possitive for slowing in one side.
This neuro didn't feel the need to do other testing and DX me with MS and sent me away with a bag of Rebiff to start. He had not even taken a blood test and I wanted more testing, so I got a second oppinion.
2nd Neuro- Done all bloodwork- negative, LP- negative and showed no O banding, another MRI this time with/ without contrast done two months after the first MRI was done- showed no change in the lesions, no new lesions and no enhancement. This Neuro said my Dx for now is ADEM. He done repeat MRI's every six months to look for new lesions or enhancement or any kind of change- No change. He left the state to practice in Memphis, so I was refered to one of the other neuros in his office.
3rd Neuro- Head of the MS clinic in the Brain and Spine Inst. at UT hospital.
I have had two visits with him. He repeated the VEP which is now showing definately normal. He did the fifth repeat MRI with/without contrast- Again showed no change in the lesions, no new lesions and no enhancement.
The explaination of what he said is above in my origional post.
Rheumy- I went to because of my suspicion of Sjogren's. She is the one who ran all of these blood test to look for other causes and to rule Sjogren's in or out. She found that the antibodies for Sjogren's were negative both times she has tested them. All other blood test were negative.
Double Vision, Yeah, I am going to stay on top of it and make sure he continues to do repeat MRI's at least once a year, which he is already doing. Congrats on you getting back behind the wheel, I know that must be great, I am so happy for you!
Deb, You are right, nothing about my case has added up and I think that is the problem,lol, No seriously though, the spinal fluid may have shown something bacterial had it not taken those stupid first doctors eight months to get me to a NEURO. Eight months after onset, I am thinking that anything that was abnormal as far as bacterial or viral would have been cleared out by the time I got the LP? Now as for why he thinks that the VEP would stay possitive after any event of ON, That I don't know, but he did have a copy of the VEP done in 2006 on hand for my visit the other day. He showed it to me and said it wasn't clear and was hard to read and not reliable. But he stated that the repeat VEP that he done a couple weeks ago was most definately normal. He did say that once you have an episode of ON that the VEP will usually show the damage from the past ON on repeat VEP's
The blood clotting disorder is the Factor V leiden, but I only have one copy of the gene wich is a slight defect in the gene according to my hematologist who put me on one baby asprin a day for precaution only.
Both neuros said that they didn't think the Factor V was related to the attack or that My lesions were ischemic.
Yes, I had an LP in Nov, 2006 and it was negative, and showed No O banding.
Hugs to you all
~Santana~
I think I misread something. Did you have an LP? I read something in somebody else's post, I think, that said you had a negative LP.
Deb
Deb
Something about your case just doesn't add up. I guess it's your spinal fluid not showing anything bacterial or whatever . . . If it's ADEM, and you had quite an event . . . it seems to me that something would have showed up in your spinal fluid at the time. This makes no sense at all to me.
Plus, you had SOMETHING go wrong with your vision. You practically were blind and it showed up positive on the VEP. Why then, does he think that this would still be positive if you had ON? Was the test result borderline and/or misread? I don't know much about the eyes and lesions on the optic nerves, but it seems to me that remyelination could occur with the optic nerves, too.
I found this link that discusses this topic:
http://brain.oxfordjournals.org/cgi/content/abstract/124/3/468
Since ON is so closely related to MS and it's not ischemic, if I was to place bets, you've have CIS. However, there is the issue with the blood-clotting disorder that you have (but again your doc is saying it can't be ischemic . . . ). I forget which one you have. Anti-phospholipid syndrome can be hard to differentiate with MS. However, note that if you have positive VEP, it's unlikely APS causing the problem (see the article).
Here's an article related to differential diagnosis:
http://ard.bmj.com/cgi/content/abstract/65/4/525
I did find an interesting article about a link between anticardiolipin antibody syndrome and MS (I know this is a little different from what you have, but I think it may be something to look at).
http://pearl.sums.ac.ir/semj/vol4/apr2003/ACAinMS.htm
I'm sorry I don't have answers for you, Santana, but I hope some of these article help.
Deb
Plus, you had SOMETHING go wrong with your vision. You practically were blind and it showed up positive on the VEP. Why then, does he think that this would still be positive if you had ON? Was the test result borderline and/or misread? I don't know much about the eyes and lesions on the optic nerves, but it seems to me that remyelination could occur with the optic nerves, too.
I found this link that discusses this topic:
http://brain.oxfordjournals.org/cgi/content/abstract/124/3/468
Since ON is so closely related to MS and it's not ischemic, if I was to place bets, you've have CIS. However, there is the issue with the blood-clotting disorder that you have (but again your doc is saying it can't be ischemic . . . ). I forget which one you have. Anti-phospholipid syndrome can be hard to differentiate with MS. However, note that if you have positive VEP, it's unlikely APS causing the problem (see the article).
Here's an article related to differential diagnosis:
http://ard.bmj.com/cgi/content/abstract/65/4/525
I did find an interesting article about a link between anticardiolipin antibody syndrome and MS (I know this is a little different from what you have, but I think it may be something to look at).
http://pearl.sums.ac.ir/semj/vol4/apr2003/ACAinMS.htm
I'm sorry I don't have answers for you, Santana, but I hope some of these article help.
Deb
I hope you don't think I implied that it didn't knock you on your behind because I know it did. I know you went threw heck and back and are still fighting. I'm more or less analyzing your neuros thinking. You had such a severe onset that HE thinks that if it was MS you would have more lesions by now or a positive LP or more episodes. That's why he is leaning more towards ADEM then anything else. The statement about my mother's Sjogrens...is more about how it relapse and remitts. My mother feels fine one day and feels horrible the next. I'm not down playing what you are feeling or have gone through.
I'm just stating above, that some people aren't typical and you do need to be watched which it sounds like he is going to do even though at this present time he doesn't believe it's MS. I think a little outside the box because not everybody follows the same path. Evidence of a disease comes out at different times for everybody. It might take longer for some people and shorter for others. I just want them to keep a close eye on you and make sure that they don't forget that some people aren't typical, that's all.
I wish I could tell you what messed with your life so badly. I wish that someone could tell me. I don't have a DX either. I've had most of the mimics eliminated. I need to see a pulmonary specialist to see about Sarcoidosis. Other than that I have no clue. I had a lip biopsy years ago for Sjogrens, but it wasn't enough lymphocyte infiltration. The antibodies blood test was negative. It was recently confirmed that I had a c-spine lesion that an old neuro blew off as an artifact but it can't be, since it showed up on 2 different MRI machines in the exact same place on the spine.
I'm sorry if I offended you. I really was just analyzing your neuros thinking on why he is thinking ADEM and not MS. I, on the other hand wouldn't count anything out just yet. Only time will tell the true tale on what is going on. How come this first episode couldn't be CIS? Does it not come on that strong? Please forgive me if I did offend you.
Your Friend
I'm just stating above, that some people aren't typical and you do need to be watched which it sounds like he is going to do even though at this present time he doesn't believe it's MS. I think a little outside the box because not everybody follows the same path. Evidence of a disease comes out at different times for everybody. It might take longer for some people and shorter for others. I just want them to keep a close eye on you and make sure that they don't forget that some people aren't typical, that's all.
I wish I could tell you what messed with your life so badly. I wish that someone could tell me. I don't have a DX either. I've had most of the mimics eliminated. I need to see a pulmonary specialist to see about Sarcoidosis. Other than that I have no clue. I had a lip biopsy years ago for Sjogrens, but it wasn't enough lymphocyte infiltration. The antibodies blood test was negative. It was recently confirmed that I had a c-spine lesion that an old neuro blew off as an artifact but it can't be, since it showed up on 2 different MRI machines in the exact same place on the spine.
I'm sorry if I offended you. I really was just analyzing your neuros thinking on why he is thinking ADEM and not MS. I, on the other hand wouldn't count anything out just yet. Only time will tell the true tale on what is going on. How come this first episode couldn't be CIS? Does it not come on that strong? Please forgive me if I did offend you.
Your Friend
I'm glad you are in the hands of a neuro who is genuinely concerned and wanting to follow up on you. It really does seem as though you've done all that can be done for now. It is encouraging that your visual defect continues to heal, and to be told that improvement may continue for years. It makes sense that a symptom so severe would take a long time to heal. As long as there continues to be the question of even the possibilty of MS, I hope you are able to continue to have repeat MRIs at least once or twice a year to stay on top of any possible progression, and to get on a DMD promptly if this is appropriate. Of course my sincere hope is that it is not MS, and that this was a one time event, never to rear its ugly head again.
Hey there,
Well, I have to ask, cause I'm confused, and I'm sorry if you've already mentioned and I've not read.
How can they tell all these lesions 'happened' at once? Did they enhance during one of the MRIs? Was the imaging taken on the same machine (i.e. same strength, etc) and then the next set of imaging months later showed that much more lesions?
Also, the 1st couple were neuros but this is the 3rd and it's a rheumy? Again, I'm sorry to ask you to rehash, just trying to get it straight in my slow brain...and thinking I've not followed lately enough...
ttys,
Shell
Well, I have to ask, cause I'm confused, and I'm sorry if you've already mentioned and I've not read.
How can they tell all these lesions 'happened' at once? Did they enhance during one of the MRIs? Was the imaging taken on the same machine (i.e. same strength, etc) and then the next set of imaging months later showed that much more lesions?
Also, the 1st couple were neuros but this is the 3rd and it's a rheumy? Again, I'm sorry to ask you to rehash, just trying to get it straight in my slow brain...and thinking I've not followed lately enough...
ttys,
Shell
It is not that I want to have any disease or illness, but something happened to me in April 2006 and it was severe and knocked me flat down and it has taken two and a half years to pull myself back up this far, with more recovery still to go. I just want to know what it was/is but with MS and other mimics it is not always a clear cut answer at first.
At least I know that I have done everything humanly possible to make sure that my doctors look at all of the mimics and have had most of the test to rule them out. That is about all that can be done for now. Maybe the reason they are not finding anthing in my blood work or why they didn't find anything in my spinal fluid, or why there is no new lesions this long after is because whatever it was is gone.
But then there is the thought of what if this monster comes back to finish me off! Oh well, guess we can't live our lives on what if's. I guess it is just hard to wrap my mind around how a one time attack like I had could have been so severe and done so much damage, and then be gone, but ADEM does exist and even though it is monophasic, it still leaves survivors with deficeits that can be debilitating.
I guess the whole push for answers for me has been to determine if I needed to be started on the DMD's or not. The first Neuro practically threw them at me without even doing a blood test(too fast). The other two both agreed that I did not need to start the meds unless a MS dx could be confirmed with two separate attacks documented in space and time.
I really liked my second neuro,the one who moved out of state, but he wasn't as sure of his own oppinion as this third one is. He isn't saying that there isn't still a small chance that I have a mild form of MS, but I can tell that he is confident in what his opinion is. I guess I need to take into account that he does head up an MS clinic the only one in Knoxville, Tn that I am aware of. So if he deals with MS a lot, then he should have experience in recognizing it when he sees it.
He definately is not releasing me out into the wild blue yonder. He wants to see me back in his office in six months, and will decide then if a sixth repeat MRI needs to be done at this time or if it can wait until it has been a year from the one I just had. He also told me to be sure and call him sooner if I had any changes at all. So I guess for now this is all that can be found out and done!
I am OK with that and I feel confident now that the test have been done that needed to be done for now.
What is your dx? Or are you in limbo too? I remember that they were looking at Sjogren's with you at one time, is this the only other possible dx for you or are there more? I will be staying here with you guys, you all are family to me now and hopefully I can help someone else who is as confused as I was at the start of this nightmare!
Let's stay in touch, OK?
Your friend
~Santana~
At least I know that I have done everything humanly possible to make sure that my doctors look at all of the mimics and have had most of the test to rule them out. That is about all that can be done for now. Maybe the reason they are not finding anthing in my blood work or why they didn't find anything in my spinal fluid, or why there is no new lesions this long after is because whatever it was is gone.
But then there is the thought of what if this monster comes back to finish me off! Oh well, guess we can't live our lives on what if's. I guess it is just hard to wrap my mind around how a one time attack like I had could have been so severe and done so much damage, and then be gone, but ADEM does exist and even though it is monophasic, it still leaves survivors with deficeits that can be debilitating.
I guess the whole push for answers for me has been to determine if I needed to be started on the DMD's or not. The first Neuro practically threw them at me without even doing a blood test(too fast). The other two both agreed that I did not need to start the meds unless a MS dx could be confirmed with two separate attacks documented in space and time.
I really liked my second neuro,the one who moved out of state, but he wasn't as sure of his own oppinion as this third one is. He isn't saying that there isn't still a small chance that I have a mild form of MS, but I can tell that he is confident in what his opinion is. I guess I need to take into account that he does head up an MS clinic the only one in Knoxville, Tn that I am aware of. So if he deals with MS a lot, then he should have experience in recognizing it when he sees it.
He definately is not releasing me out into the wild blue yonder. He wants to see me back in his office in six months, and will decide then if a sixth repeat MRI needs to be done at this time or if it can wait until it has been a year from the one I just had. He also told me to be sure and call him sooner if I had any changes at all. So I guess for now this is all that can be found out and done!
I am OK with that and I feel confident now that the test have been done that needed to be done for now.
What is your dx? Or are you in limbo too? I remember that they were looking at Sjogren's with you at one time, is this the only other possible dx for you or are there more? I will be staying here with you guys, you all are family to me now and hopefully I can help someone else who is as confused as I was at the start of this nightmare!
Let's stay in touch, OK?
Your friend
~Santana~
I would agree that all your lesions did occur at the same time because you didn't have problems with your vision until then. It does make sense because you would have had a lot of problems a long time ago, if it was caused from something else. You would have especially noticed vision problems because of the lesions locations.
Typically, if this is MS, you would have more problems, continuing symptoms off and on, and not just the one major episode. So it does look more like ADEM then anything now since he has covered all bases. He is right that not only MS does this (relapse & remits), but so does Lupus and Sjogrens. You have your good days and you have your bad days. I've seen my mother do it with the Sjogrens and it can really knock her down for the count, if you know what I mean.
The only way I would think this would change is if you had a "flare up" of new or old symptoms. To me, that would indicate, that it wasn't ADEM all along , but MS. You would just be atypical. Not following the norm. I know I've read a lot of stories on this forum, where people had symptoms but the disease didn't come out completely until years later.
I'm not sure of my DX, but I did have weird symptoms that occurred back in December of 1998. I also had 2 clean MRIs back in 1998. Some of these same neurological symptoms have resurfaced in 2007 and 2008 and it wasn't until I found this forum, that I found out that these symptoms are MS symptoms or related to MS. Whether or not what happened to me back in 1998 is related, I don't know...but I have had weird things that doctors could not explain practically all my life, but I ignored it until it bit my behind.
I would say if you don't get any more symptoms...it does look more like ADEM. BUT I personally would still keep an eye on things..just like your doctor seems to be doing. I know that my new neuro believes that once the disease starts in, full fledged (when lesions start to appear on MRI), it's very rare not to have some changes on MRI within 2-3 years after onset. It does sound like you have a very caring neuro, which seems to be hard to come by these days. Hang in there. It's hard to play this "wait and see" game but you are getting some answers and as long as your symptoms don't change, it sounds like everything will be fine. I'll keep my fingers crossed.
HUGS
Typically, if this is MS, you would have more problems, continuing symptoms off and on, and not just the one major episode. So it does look more like ADEM then anything now since he has covered all bases. He is right that not only MS does this (relapse & remits), but so does Lupus and Sjogrens. You have your good days and you have your bad days. I've seen my mother do it with the Sjogrens and it can really knock her down for the count, if you know what I mean.
The only way I would think this would change is if you had a "flare up" of new or old symptoms. To me, that would indicate, that it wasn't ADEM all along , but MS. You would just be atypical. Not following the norm. I know I've read a lot of stories on this forum, where people had symptoms but the disease didn't come out completely until years later.
I'm not sure of my DX, but I did have weird symptoms that occurred back in December of 1998. I also had 2 clean MRIs back in 1998. Some of these same neurological symptoms have resurfaced in 2007 and 2008 and it wasn't until I found this forum, that I found out that these symptoms are MS symptoms or related to MS. Whether or not what happened to me back in 1998 is related, I don't know...but I have had weird things that doctors could not explain practically all my life, but I ignored it until it bit my behind.
I would say if you don't get any more symptoms...it does look more like ADEM. BUT I personally would still keep an eye on things..just like your doctor seems to be doing. I know that my new neuro believes that once the disease starts in, full fledged (when lesions start to appear on MRI), it's very rare not to have some changes on MRI within 2-3 years after onset. It does sound like you have a very caring neuro, which seems to be hard to come by these days. Hang in there. It's hard to play this "wait and see" game but you are getting some answers and as long as your symptoms don't change, it sounds like everything will be fine. I'll keep my fingers crossed.
HUGS
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