Aa
Been Gone For a while, Just checking in with everyone!
I have been off the forum for a while, a lot of things going on, checking in to check up on all of you. I am coming close to my three year mark since my origional attack with all repeat MRI's still showing no new lesions. My MS specialist is still saying he does not think I have MS, but is now not saying that I had ADEM either. He says that I had a immune response to an unknown trigger, this is my working diagnosis still at almost three years after the attack. He went on to say that he does not think this is MS and if it is it is a very mild case, but he still does not think that it is. My visual field defect is still continuing to slowly improve, very slowly, but not enough to allow me to drive yet.
An update on my step son who had an attack two years after mine:
His spinal tap came back possitive and showed greater than five O bands with several other things elevated as well. His follow up MRI three months after the origional attack showed one new lesion in a different area of his brain in the frontal lobe. This lesion was not small, but yet he showed no new symptoms prior to the discovery of this new lesion, which I am thinking supports the fact that lesions can be silent.
I am sorry I have been absent on this forum for so long. I have only been trying to pull my life back together after the attack I had turned it upside down. My MS specialist said that I could start to breathe at the five year mark, but ten years would have to pass before I could really start to relax some that I would not have another attack. But is still thinking I do not have MS. I am puzzled at the uncertainty the doctors have when diagnosing patients like me who do not fit the picture of MS, but still have had an attack that has left me visually impaired for an undetermined amount of time. I asked him how long this could heal, since I did not receive steriods,and My brain has healed on it's own. His answer was the brain can heal for years.
My stepson did receive steriod treatment within the first two weeks of his attack. All his double vision and other deficeits cleared within one month. I am still trying to recover my vison without steriods slowly at the three year mark. I am wondering now if the fact that he had the steriod treatment and had a new lesion within three months, and I did'nt receive any treatment at all and have not had any new lesions in three years means that there is a connection to steriod treatment VS no treatment. OR quite possibly we had/have two different things and this is the reason for our two different courses.
The one thing I think I have learned throughout this whole nightmare is that I don't think the Neuro's know. I don't think there is an answer. I think that they watch each case and treat it accordingly, only my oppinion, but after three years with no definite DX this is what I am starting to think.
I would love to start coming back on this forum. I will never forget the support that all of you gave me during the hardest time in my life, I could not have made it through that without you all, and for that I owe you all forever. I have worked through some of the emotions that has kept me away for this long and I will try to come here now to be of some kind of help to someone else who finds themselves in this situation as I was, lost and in need of information and support.
Love and Hugs to all my friends here
~Santana8
An update on my step son who had an attack two years after mine:
His spinal tap came back possitive and showed greater than five O bands with several other things elevated as well. His follow up MRI three months after the origional attack showed one new lesion in a different area of his brain in the frontal lobe. This lesion was not small, but yet he showed no new symptoms prior to the discovery of this new lesion, which I am thinking supports the fact that lesions can be silent.
I am sorry I have been absent on this forum for so long. I have only been trying to pull my life back together after the attack I had turned it upside down. My MS specialist said that I could start to breathe at the five year mark, but ten years would have to pass before I could really start to relax some that I would not have another attack. But is still thinking I do not have MS. I am puzzled at the uncertainty the doctors have when diagnosing patients like me who do not fit the picture of MS, but still have had an attack that has left me visually impaired for an undetermined amount of time. I asked him how long this could heal, since I did not receive steriods,and My brain has healed on it's own. His answer was the brain can heal for years.
My stepson did receive steriod treatment within the first two weeks of his attack. All his double vision and other deficeits cleared within one month. I am still trying to recover my vison without steriods slowly at the three year mark. I am wondering now if the fact that he had the steriod treatment and had a new lesion within three months, and I did'nt receive any treatment at all and have not had any new lesions in three years means that there is a connection to steriod treatment VS no treatment. OR quite possibly we had/have two different things and this is the reason for our two different courses.
The one thing I think I have learned throughout this whole nightmare is that I don't think the Neuro's know. I don't think there is an answer. I think that they watch each case and treat it accordingly, only my oppinion, but after three years with no definite DX this is what I am starting to think.
I would love to start coming back on this forum. I will never forget the support that all of you gave me during the hardest time in my life, I could not have made it through that without you all, and for that I owe you all forever. I have worked through some of the emotions that has kept me away for this long and I will try to come here now to be of some kind of help to someone else who finds themselves in this situation as I was, lost and in need of information and support.
Love and Hugs to all my friends here
~Santana8
Quix, I like that name, Santana's desease, and I would be more than willing to let them put my screen name on it if they could only figure out what in the heck it is,lol... The MS specialist, and if any of you remember he is the head of the MS clinic at the Brain and Spine Institute at UT hospital in Knoxville Tn. The only patients this Neuro sees is MS patients, that is why I chose him. I figured that if anyone would know MS it would be a doctor who only treats MS.
His opinion, has a lot to do with inactivity on MRI but also seems to have some to do with the fact that the second VEP was normal. He compared the first VEP with the second , the first being done by the first neuro I saw eight months after the attack which was said to be possitive. After looking at the first one he seemed to feel that the possitive finding was a false possitive, another words the test was not accurate, something to do with the appearance of the test. But when the one he repeated at the two year mark came back normal and even better than normal as he put it, that seemed to wiegh a lot with him. He said that once a VEP is possitive it usually stays possitive, another words damage would be visible even long after the damage occured and most likely forever.
Also the completely negative LP and blood work too seemed to add to his argument against MS. He did not say it was definately not MS. He said that he did not think it was and if it is it would have to be an extremely mild case. I asked him when will I ever know if I have MS or will I ever know for sure. He said that I could start to slightly breathe a little now at the three year mark, could breathe more at the five year mark but could not really breathe alot until the ten year mark. So Heather U are right, Years can go by and I could still have another attack and be dx with MS, this is what he said, but he doubts it because of my course. He pretty much discounted the ADEM, saying that was just grasping at straws., truth is they don't know what the trigger was, if it was a virus, infection, med change, MS, or what, they just don't know and my MS specialist was completely honest with me about this.
You would think I would have been frustrated about that answer but relief was what I felt because finally one of these neuro's had the gutts to tell the truth, THEY DON'T KNOW! He said he would not put me on DMD unless I showed more symptoms or recurance of old symptoms or a new attack or changes on MRI....
Heather I asked about the residual symptoms that I still have from time to time but are getting less and less as time goes on, like tingling in arms and legs, burning across my feet, the stiff neck is almost completely gone but has not been gone for a long time yet. His explaination residual damage because I am not losing function, the limb or affected area is not going numb, staying numb for at least 24 hours, it is fleeting and getting less frequent in it's appearing.
This is the answer I am left with almost three years later. And Heather one other thing my lesions from the first attack still show up on MRI in the exact same area maybe a little lighter but definately not gone, I would say scared too, just like U... Can I ask U how many years went by before new lesions showed up on MRI in your case
Sllowe, thank U for your kind welcome back.. And yes I am here to stay..
hugs, ~Santana
His opinion, has a lot to do with inactivity on MRI but also seems to have some to do with the fact that the second VEP was normal. He compared the first VEP with the second , the first being done by the first neuro I saw eight months after the attack which was said to be possitive. After looking at the first one he seemed to feel that the possitive finding was a false possitive, another words the test was not accurate, something to do with the appearance of the test. But when the one he repeated at the two year mark came back normal and even better than normal as he put it, that seemed to wiegh a lot with him. He said that once a VEP is possitive it usually stays possitive, another words damage would be visible even long after the damage occured and most likely forever.
Also the completely negative LP and blood work too seemed to add to his argument against MS. He did not say it was definately not MS. He said that he did not think it was and if it is it would have to be an extremely mild case. I asked him when will I ever know if I have MS or will I ever know for sure. He said that I could start to slightly breathe a little now at the three year mark, could breathe more at the five year mark but could not really breathe alot until the ten year mark. So Heather U are right, Years can go by and I could still have another attack and be dx with MS, this is what he said, but he doubts it because of my course. He pretty much discounted the ADEM, saying that was just grasping at straws., truth is they don't know what the trigger was, if it was a virus, infection, med change, MS, or what, they just don't know and my MS specialist was completely honest with me about this.
You would think I would have been frustrated about that answer but relief was what I felt because finally one of these neuro's had the gutts to tell the truth, THEY DON'T KNOW! He said he would not put me on DMD unless I showed more symptoms or recurance of old symptoms or a new attack or changes on MRI....
Heather I asked about the residual symptoms that I still have from time to time but are getting less and less as time goes on, like tingling in arms and legs, burning across my feet, the stiff neck is almost completely gone but has not been gone for a long time yet. His explaination residual damage because I am not losing function, the limb or affected area is not going numb, staying numb for at least 24 hours, it is fleeting and getting less frequent in it's appearing.
This is the answer I am left with almost three years later. And Heather one other thing my lesions from the first attack still show up on MRI in the exact same area maybe a little lighter but definately not gone, I would say scared too, just like U... Can I ask U how many years went by before new lesions showed up on MRI in your case
Sllowe, thank U for your kind welcome back.. And yes I am here to stay..
hugs, ~Santana
Hey dearheart...so good to hear from you again. You've been missed.
I have tried to take a break from the Forum several times, but find that I am "MS Forum addicted." I just can't seem to make it through a week without hearing and commenting about what is going on with others. I hope that your visit now will mean that you will offer us more iinformation about you and your step-son's course.
I just wanted to bring something up. (You already know that I have MS) My first MRI 12 years ago, showed lesions in the brain and one in the spinal cord, that all enhanced with contrast dye. So it was obvious that I was in a full-blown attack. More importantly, my Neuro then actually diagnosed me with MS before the MRI results came in. He based it on the explanation of the attack and the physical deficits he saw during my physical exam.
Then San, came years of inactivity on MRI. Years. I was still having attacks and remissions but by the time they did the MRI, it showed nothing had changed. I mention this, because this does not seem like an unusual thing to have happen, early in the disease. Others show changes on MRI throughout their course. Everytime I did have an MRI, the lesions seen in the very first MRI were still there and in the same places. So they were scarred, obviously.
This inactivity was enough for another Neuro to take away my diagnosis of MS, for a year. I left his care because he was an idiot. But the MS did continue and finally showed more lesions.
I think it's wrong for a Neuro to see a patient in an obvious attack with enhancement on MRI, have a history of relapsing/remitting course and then have a Neuro take away that diagnosis because they don't "See" an increase on MRI. But yet they see continual problems on physical exams. Just like you are showing. Am I making any sense?
Like I said in another post, I wish ALL the Neuro's in the US and Canada would get their asprin's together and decide on how to treat patients the same across the board. If it quacks like a duck, walks like a duc, it IS a duck.... I believe more people would get a diagnosis, whether it be MS or something else, if doctor's would stick with a rule of thumb and not make things up to suit themselves. So many people on the Forum in LimboLand show all the signs of MS, but Neuro's are basing all their opinions on MRI's and LP's. What happened before MRI's and LP's were routinely done? Weren't patients diagnosed with MS back then?
I hear your frustration and totally understand it.....
Glad you are back with us. Big hugs to you and your step-son. Alot to be facing at age 16.
Heather
I have tried to take a break from the Forum several times, but find that I am "MS Forum addicted." I just can't seem to make it through a week without hearing and commenting about what is going on with others. I hope that your visit now will mean that you will offer us more iinformation about you and your step-son's course.
I just wanted to bring something up. (You already know that I have MS) My first MRI 12 years ago, showed lesions in the brain and one in the spinal cord, that all enhanced with contrast dye. So it was obvious that I was in a full-blown attack. More importantly, my Neuro then actually diagnosed me with MS before the MRI results came in. He based it on the explanation of the attack and the physical deficits he saw during my physical exam.
Then San, came years of inactivity on MRI. Years. I was still having attacks and remissions but by the time they did the MRI, it showed nothing had changed. I mention this, because this does not seem like an unusual thing to have happen, early in the disease. Others show changes on MRI throughout their course. Everytime I did have an MRI, the lesions seen in the very first MRI were still there and in the same places. So they were scarred, obviously.
This inactivity was enough for another Neuro to take away my diagnosis of MS, for a year. I left his care because he was an idiot. But the MS did continue and finally showed more lesions.
I think it's wrong for a Neuro to see a patient in an obvious attack with enhancement on MRI, have a history of relapsing/remitting course and then have a Neuro take away that diagnosis because they don't "See" an increase on MRI. But yet they see continual problems on physical exams. Just like you are showing. Am I making any sense?
Like I said in another post, I wish ALL the Neuro's in the US and Canada would get their asprin's together and decide on how to treat patients the same across the board. If it quacks like a duck, walks like a duc, it IS a duck.... I believe more people would get a diagnosis, whether it be MS or something else, if doctor's would stick with a rule of thumb and not make things up to suit themselves. So many people on the Forum in LimboLand show all the signs of MS, but Neuro's are basing all their opinions on MRI's and LP's. What happened before MRI's and LP's were routinely done? Weren't patients diagnosed with MS back then?
I hear your frustration and totally understand it.....
Glad you are back with us. Big hugs to you and your step-son. Alot to be facing at age 16.
Heather
Welcome back Sweety!
It is nice to see you, and I'm glad to hear the time away has served your mind and body well.
Thank you so much for coming back.
ttys,
Shell
It is nice to see you, and I'm glad to hear the time away has served your mind and body well.
Thank you so much for coming back.
ttys,
Shell
It is so good to see you. The forum didn't seem right without you, but I understood the need to get your head together. Whatever they call it, "Santana's Disease" does not appear to be MS. This is a good thing. No new lesions and gradual improvement.
I hope this is something of a return for you and not just a drop in to say howdy. You have so much to offer people who come, especially those still in limbo.
Sorry to hear about your stepson. I'm glad he is getting treatment and has had good resolution from his first attack. Yes, having a new large lesion and no new symptoms does speak volumes about how lesions can be silent.
Good to see you!!!
Quix :))
I hope this is something of a return for you and not just a drop in to say howdy. You have so much to offer people who come, especially those still in limbo.
Sorry to hear about your stepson. I'm glad he is getting treatment and has had good resolution from his first attack. Yes, having a new large lesion and no new symptoms does speak volumes about how lesions can be silent.
Good to see you!!!
Quix :))
Thanks for the welcome back! I worried a little that no one would know me here anymore,lol... Yes the break was to take a deep breath and break away for a while from the search for a dx. It was starting to consume me both mentally and physically. I had forgotten that I actually have a life outside of this illness. It will be three years in April 09 since my origional attack, and still no deffinite answer as to what happened.
As some of you may remember my first neuro dx MS without all the testing needed. My second opinion and second neuro said I had ADEM. and now my third neuro who is a MS specialist says he does not think I have MS, and if it is it is a very mild case. He has left me with the dx of an immune response to an unknown trigger. I still believe that the sudden change of SSRI meds 6 weeks prior to the attack was the trigger, but none of my doctors will confirm this. I have been scanned every six months for this whole three years with no new lesions showing up, spinal tap was neg and showed no O banding. All blood work normal My first VEP was said to be possitive but the repeat one done six months ago is normal??????????? I am awaiting my next neuro visit which is coming up this month. I have not been given any meds at all except for Restasis for dry eye.
My stepson's case seems very different from mine. He had spent the week prior to his attack at the lake swimming and camping, He had been burning a fire outside when he got home, while helping his mother clean out an old house. Thier were lots of old cans in the fire, some cleaning supply cans, possible chemicals, but all the peds neuro's said that was not contributing. his started with numbness up one side of his face which spread to his head. he had double vision one image on top of the other, opposite from the double vision I had which was side to side. and he could not keep his balance and lost some function on his right side.
They gave him IV steriods in Children's hospital and within a month he made a full recovery of function. But then at his three month follow up MRI it showed a new lesion in the frontal lobe as large as a nickle, and this area was not affected in his frirst attack. He had no symptoms of a second attack and we would have never known that he had it had he not went in for the MRI. Because of this new lesion in space and time in a different area and added to the fact that his spinal tap was possitive showing greater than 5 O bands and other things elevated, they are dx him with MS and start him on the DMD's. He is back in school now after being home schooled for the first cemester. His symptoms have not returned after steriods eventhough he showed a new lesion in a different area of the brain.
I feel a lot better now that I have worked through some of the emotional trauma that the past three years has put me through and I plan to visit regular now! I know I need to give back the knowledge I have learned here from all my friends who were and still are my lifeline in the hardest time of my life, I love You all!
~Santana
As some of you may remember my first neuro dx MS without all the testing needed. My second opinion and second neuro said I had ADEM. and now my third neuro who is a MS specialist says he does not think I have MS, and if it is it is a very mild case. He has left me with the dx of an immune response to an unknown trigger. I still believe that the sudden change of SSRI meds 6 weeks prior to the attack was the trigger, but none of my doctors will confirm this. I have been scanned every six months for this whole three years with no new lesions showing up, spinal tap was neg and showed no O banding. All blood work normal My first VEP was said to be possitive but the repeat one done six months ago is normal??????????? I am awaiting my next neuro visit which is coming up this month. I have not been given any meds at all except for Restasis for dry eye.
My stepson's case seems very different from mine. He had spent the week prior to his attack at the lake swimming and camping, He had been burning a fire outside when he got home, while helping his mother clean out an old house. Thier were lots of old cans in the fire, some cleaning supply cans, possible chemicals, but all the peds neuro's said that was not contributing. his started with numbness up one side of his face which spread to his head. he had double vision one image on top of the other, opposite from the double vision I had which was side to side. and he could not keep his balance and lost some function on his right side.
They gave him IV steriods in Children's hospital and within a month he made a full recovery of function. But then at his three month follow up MRI it showed a new lesion in the frontal lobe as large as a nickle, and this area was not affected in his frirst attack. He had no symptoms of a second attack and we would have never known that he had it had he not went in for the MRI. Because of this new lesion in space and time in a different area and added to the fact that his spinal tap was possitive showing greater than 5 O bands and other things elevated, they are dx him with MS and start him on the DMD's. He is back in school now after being home schooled for the first cemester. His symptoms have not returned after steriods eventhough he showed a new lesion in a different area of the brain.
I feel a lot better now that I have worked through some of the emotional trauma that the past three years has put me through and I plan to visit regular now! I know I need to give back the knowledge I have learned here from all my friends who were and still are my lifeline in the hardest time of my life, I love You all!
~Santana
Welcome back, we missed you.
Thanks for the update on your stepson. I remember when you were going through this crisis with him and we all worried about how things would turn out. So, they are dx him with MS? He is so young, only 16. But, young people are so resiliant and they seem to bounce back so well. Has his daily life pretty much went back to normal yet?
Again, welcome back and thanks for letting us know how you are doing too.
Love and hugs,
Julie
Thanks for the update on your stepson. I remember when you were going through this crisis with him and we all worried about how things would turn out. So, they are dx him with MS? He is so young, only 16. But, young people are so resiliant and they seem to bounce back so well. Has his daily life pretty much went back to normal yet?
Again, welcome back and thanks for letting us know how you are doing too.
Love and hugs,
Julie
Welcome home!
Thanks for the update on how you're doing. I hope that your visual field defect continues to improve steadily, or even a little faster! :o)
I think you should visit often, now that you're coming to grips with all you've been through and visiting won't be too emotionally charged.
Your experience and input would be invaluable, including your stepson's journey. Your own information and support would be a big help, so please do come home more often and visit with us all.
Hugs,
Kathy
Thanks for the update on how you're doing. I hope that your visual field defect continues to improve steadily, or even a little faster! :o)
I think you should visit often, now that you're coming to grips with all you've been through and visiting won't be too emotionally charged.
Your experience and input would be invaluable, including your stepson's journey. Your own information and support would be a big help, so please do come home more often and visit with us all.
Hugs,
Kathy
Hi Santana and welcome back!!
I'm glad you are here and letting us know how you are. I'm sorry you still don't have a dx, I know how hard it is as I'm undx also.
Sending my best to your stepson and hope that he does well on the DMDs.
Hope you will come see us more often, sounds like you need a good support system, and you know you can find that here!!
Take care of yourself, I look forward to seeing you here more often.
Hugs,
doni
I'm glad you are here and letting us know how you are. I'm sorry you still don't have a dx, I know how hard it is as I'm undx also.
Sending my best to your stepson and hope that he does well on the DMDs.
Hope you will come see us more often, sounds like you need a good support system, and you know you can find that here!!
Take care of yourself, I look forward to seeing you here more often.
Hugs,
doni
Hi Santana I am glad to see you back. I am sorry things have been so hard for you. I imagine you have bee not only physically but mentally and emotionally exhausted. I understand the staying away. After my abnormal neuropshych eval and my neuro saying "we won't call it MS we will call it demylinating disease" I had to take a break also. I just needed time to process. Hang in there and I hope things get better for you.
peace, love and joy
terry
peace, love and joy
terry
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