Aa
Please help, i'm just confused, and confused and...
I need your opinion. When I was in NY this last time I was handed the MRI report and it said
The MRI of the brain results say
“there is a small punctate focus of FLAIR hyperintensity within the left cerebellar hemisphere and vague FLAIR hyperintensity within the left mesial occipital lobe and bilateral posterial parietal periventricular regions. RCBV values of up to 1.0 are noted in the areas of questionable signal abnormality…. There is evidence for a skull base or calvarial lesion.”
I also saw the LP report and it said that there was two O-bands and high protein, etc.
However, they are saying there isn't any sign of damage to my central nervous system.
They would like to put in my the NY hosp. to monitor for 24 hours for any seizure activity. However, they say that they (my docs) will not treat me unless the hosp. dr.'s advise it.
And this is the only thing they are offering- as far as future testing or hope, etc.
They said in the appt. that I would have MS- expcept that it has gone faster than all the 10,000 cases they see, so it is impossible. I am fine with that, but I would like them to look outside the box, and use the info they have to go for something else. :)
The thing is that my seizures are becoming more stable with the meds I'm on, so it's a feeling like, well, they are treated and not occuring now near as much with enough rest and 100 mg Topamax so why jerk all that and inccur a LOT of cost?
one dr. said that if we do it, 'maybe' they will happen in the 24 hours and we can pinpoint the damage in the brain and perhaps use that to futher a diagnosis, but she said it was a stab in the dark. Another doctor said that he would just use it to see if they were actually occuring and then medicate me accordingly, and another one locally said, and I put the most stock in him, that I should stay in the hospital until they happen becuase 24 hours just isn't enough. SOO, I will try to get into the UAB (here in AL) seizure unit. Which brings in another problem.
I had an abnormal VEP in May... which may have clinched a diagnosis. But the NYU dr.s just say over and over, we can't read and understand that VEP results, even though it says abnormal, we will go with the one done in Aug. that says normal.
So, if I have it done here in AL, will the resuls transfer, or will it be like that VEP, unreadable and in vain?
So, why should I do it? Well, becuase that's the only thing they are willing to do. Their only other option for me "you need to go home and just live" Yes, I was told that by one doctor. I am trying....
PPPPPPPLLLLLLEEEEAAAASSSEEEE..............
Is it worth it? My family is just as confused as I am, about this whole thing.
~Sunnytoday~
The MRI of the brain results say
“there is a small punctate focus of FLAIR hyperintensity within the left cerebellar hemisphere and vague FLAIR hyperintensity within the left mesial occipital lobe and bilateral posterial parietal periventricular regions. RCBV values of up to 1.0 are noted in the areas of questionable signal abnormality…. There is evidence for a skull base or calvarial lesion.”
I also saw the LP report and it said that there was two O-bands and high protein, etc.
However, they are saying there isn't any sign of damage to my central nervous system.
They would like to put in my the NY hosp. to monitor for 24 hours for any seizure activity. However, they say that they (my docs) will not treat me unless the hosp. dr.'s advise it.
And this is the only thing they are offering- as far as future testing or hope, etc.
They said in the appt. that I would have MS- expcept that it has gone faster than all the 10,000 cases they see, so it is impossible. I am fine with that, but I would like them to look outside the box, and use the info they have to go for something else. :)
The thing is that my seizures are becoming more stable with the meds I'm on, so it's a feeling like, well, they are treated and not occuring now near as much with enough rest and 100 mg Topamax so why jerk all that and inccur a LOT of cost?
one dr. said that if we do it, 'maybe' they will happen in the 24 hours and we can pinpoint the damage in the brain and perhaps use that to futher a diagnosis, but she said it was a stab in the dark. Another doctor said that he would just use it to see if they were actually occuring and then medicate me accordingly, and another one locally said, and I put the most stock in him, that I should stay in the hospital until they happen becuase 24 hours just isn't enough. SOO, I will try to get into the UAB (here in AL) seizure unit. Which brings in another problem.
I had an abnormal VEP in May... which may have clinched a diagnosis. But the NYU dr.s just say over and over, we can't read and understand that VEP results, even though it says abnormal, we will go with the one done in Aug. that says normal.
So, if I have it done here in AL, will the resuls transfer, or will it be like that VEP, unreadable and in vain?
So, why should I do it? Well, becuase that's the only thing they are willing to do. Their only other option for me "you need to go home and just live" Yes, I was told that by one doctor. I am trying....
PPPPPPPLLLLLLEEEEAAAASSSEEEE..............
Is it worth it? My family is just as confused as I am, about this whole thing.
~Sunnytoday~
I don't know enough on the subject to offer any advice.
However, I am praying for you and your family and your doctors!
Richard
However, I am praying for you and your family and your doctors!
Richard
I think Quix has some really good advice for you. An email to the doctor is a wonderful idea. Rushing into this doesn't feel right considering the expense and confusion.
Deb
Deb
I agree with Quix Sunny. I would stay in Alabama and go into the seizure unit there. However, I also see no reason to rush it. There will have to be another opening in that unit at a later date and if you think your seizures are stabilizing, then why start something?
I am annoyed at Dr. K at NYU. It seems like Herbert pushed him around. They said you show no damage to your CNS. Isn't your neuro exam abnormal? Doesn't that mean there is damage to the CNS??
I would be tempted to push off the next NYU appt till early 2009. NY City in December is very expensive and crowded and quite hectic. If they would make the trip another "we have no answers" appt for you, then it is a total waste of time and money.
Personally, I am a bit worried about our Dr. H and K appt in November. I hope H doesn't do something like that to Craig.,
Just my two cents to add to the group. I am sorry this is so stressful to you and your family. I thought you were so close to an answer.......
Elaine
I am annoyed at Dr. K at NYU. It seems like Herbert pushed him around. They said you show no damage to your CNS. Isn't your neuro exam abnormal? Doesn't that mean there is damage to the CNS??
I would be tempted to push off the next NYU appt till early 2009. NY City in December is very expensive and crowded and quite hectic. If they would make the trip another "we have no answers" appt for you, then it is a total waste of time and money.
Personally, I am a bit worried about our Dr. H and K appt in November. I hope H doesn't do something like that to Craig.,
Just my two cents to add to the group. I am sorry this is so stressful to you and your family. I thought you were so close to an answer.......
Elaine
I wish, honey, that I was there and could just be with you to explain and listen and be a support. I will try to think out what you are going through and give my my 10 cents worth.
You went there for the neurological analysis of what is going on with you. They seemed initially to be providing that and actually they thought it might well be MS but, "it is going too fast." Somehow, in my non-neurologist brain, that doesn't make sense. In those 10,000 patients they have seen I know that some have progressed slowly and some much faster. For the fastest they have ever seen, did they pause and say, "Gee, this is really fast!" Could someone else proceed faster? At what point do they draw a line?" The literature talks about some cases proceeding extremely rapidly to a severe disability level. You are about 5 months out from the onset and you have alot of problems. I can't see that this really excludes MS.
Okay, the focus is off MS and onto seizures. Do they think this is all caused by a seizure disorder or are the seizures just another thing that they are trying to clear up? Seizures are more common than MS and could well be worked up in any state in a good seizure unit. A seizure unit usually has the capability continuous 24 hour a day monitoring and capturing any seizure both on video and by EEG. It seems that you could just as well be monitored there in AL at a fraction of the cost. The doctors in NY could view the EEG tracings and video of any events. They may be so egotistical as to deny that anyone could possibly do as good a job as them, but this would be ridiculous.
It is not uncommon to stay in a video-seizure unit several days. I was in one for about 4 days when I first had my severe episodes of vertigo. My choice would be to do it there closer to home and at a fraction of the cost. There are seizure experts there in Alabama. Real Epileptologists are far more common than really good MS specialists.
With all the confusion, and back tracking, I think you should not rush into a major expense and time commitment that far away. If necessary it could always be scheduled in the future. Also, physically you are feeling better. So, my vote for those reasons is that you should look there closer to home. Your parents are being rushed to make a decision and I don't see the hurry. Except in life-threatening situations, being rushed to make such a decision is never good. Other openings will come up if you need them in NY.
As far as NY's rejection of the VEP, we have seen several people report that their VEP was uninterpretable. I think that test is harder to do well. The art of EEG capture has a much longer history, and people have much more experience. Talk to whichever neuro has made the most sense to you and your parents, and who seems smart and interested in getting to the bottom of this.
So, for what it is worth, my inclination is to pull back to home. You have some good experiences with excellent neurologists now. You and your parents will have a better feel for when your are sealing with smart ones.
You might email Dr K or Dr. H and ask, "We left NY very confused about what your ideas are regarding what my diagnosis is. Other than the speed with which it is progressing, what else makes you think this is not MS? If all of this had happened over a year's time, would you have diagnosed MS?" and "If this is not MS, are you saying you are out of ideas or that you think it is some form of seizure disorder?" See if they can give you their current thoughts about what is happening to you. You can tell them that it is just too far and too expensive to go into the seizure unit there and stay until an event happens. Ask if they would communicate with the neurologists in AL to let them know exactly what they are thinking and looking for.
These guys make big bucks. They should be able to give you some idea of what it is they think is happening to you other than "It can't possibly be MS because it is progressing too fast." What other things progress like this? What other things can do all of this stuff to you? They should be able to articulate their thoughts in some better manner than you left NY with.
I hope this helped - and remember, I am not in your shoes. If they are only people that make you and your parents feel comfortable, then by all means go back to NY. I am way out on the sidelines and feel as confused as you do by what they have said and what it seems to mean.
Just know that I am thinking with all my little furball-filled brain about what is happening.
I hope this helped, I really do.
Quix
You went there for the neurological analysis of what is going on with you. They seemed initially to be providing that and actually they thought it might well be MS but, "it is going too fast." Somehow, in my non-neurologist brain, that doesn't make sense. In those 10,000 patients they have seen I know that some have progressed slowly and some much faster. For the fastest they have ever seen, did they pause and say, "Gee, this is really fast!" Could someone else proceed faster? At what point do they draw a line?" The literature talks about some cases proceeding extremely rapidly to a severe disability level. You are about 5 months out from the onset and you have alot of problems. I can't see that this really excludes MS.
Okay, the focus is off MS and onto seizures. Do they think this is all caused by a seizure disorder or are the seizures just another thing that they are trying to clear up? Seizures are more common than MS and could well be worked up in any state in a good seizure unit. A seizure unit usually has the capability continuous 24 hour a day monitoring and capturing any seizure both on video and by EEG. It seems that you could just as well be monitored there in AL at a fraction of the cost. The doctors in NY could view the EEG tracings and video of any events. They may be so egotistical as to deny that anyone could possibly do as good a job as them, but this would be ridiculous.
It is not uncommon to stay in a video-seizure unit several days. I was in one for about 4 days when I first had my severe episodes of vertigo. My choice would be to do it there closer to home and at a fraction of the cost. There are seizure experts there in Alabama. Real Epileptologists are far more common than really good MS specialists.
With all the confusion, and back tracking, I think you should not rush into a major expense and time commitment that far away. If necessary it could always be scheduled in the future. Also, physically you are feeling better. So, my vote for those reasons is that you should look there closer to home. Your parents are being rushed to make a decision and I don't see the hurry. Except in life-threatening situations, being rushed to make such a decision is never good. Other openings will come up if you need them in NY.
As far as NY's rejection of the VEP, we have seen several people report that their VEP was uninterpretable. I think that test is harder to do well. The art of EEG capture has a much longer history, and people have much more experience. Talk to whichever neuro has made the most sense to you and your parents, and who seems smart and interested in getting to the bottom of this.
So, for what it is worth, my inclination is to pull back to home. You have some good experiences with excellent neurologists now. You and your parents will have a better feel for when your are sealing with smart ones.
You might email Dr K or Dr. H and ask, "We left NY very confused about what your ideas are regarding what my diagnosis is. Other than the speed with which it is progressing, what else makes you think this is not MS? If all of this had happened over a year's time, would you have diagnosed MS?" and "If this is not MS, are you saying you are out of ideas or that you think it is some form of seizure disorder?" See if they can give you their current thoughts about what is happening to you. You can tell them that it is just too far and too expensive to go into the seizure unit there and stay until an event happens. Ask if they would communicate with the neurologists in AL to let them know exactly what they are thinking and looking for.
These guys make big bucks. They should be able to give you some idea of what it is they think is happening to you other than "It can't possibly be MS because it is progressing too fast." What other things progress like this? What other things can do all of this stuff to you? They should be able to articulate their thoughts in some better manner than you left NY with.
I hope this helped - and remember, I am not in your shoes. If they are only people that make you and your parents feel comfortable, then by all means go back to NY. I am way out on the sidelines and feel as confused as you do by what they have said and what it seems to mean.
Just know that I am thinking with all my little furball-filled brain about what is happening.
I hope this helped, I really do.
Quix
Julie,
thank you so much for your encouraging words.
You are right, we do join for different reasons. i joined the forum to find answers, and then stuck around to encourage others, and then this last month stayed on desperatly to find comfort. I've been so thankful for many, like you, who have helped.
I was going to post yesterday, but waited and thought sleeping on it would help but it simply got worse and all day yesterday people stopped me to ask how i was, what the doctor's said, or they called and gave me suggestions to do, eat or not to eat or to drink take or see that would heal me and I just about lost it, seriously.
There's one problem with being open and honest, or having visible symptoms and that's that everyone and their brother has their own say in your travel to your diagnosis and it can be draining.
And then we had to schedule this seizure obs. now istead of waiting and i just needed input from ya'll.
~Sunnytoday~
thank you so much for your encouraging words.
You are right, we do join for different reasons. i joined the forum to find answers, and then stuck around to encourage others, and then this last month stayed on desperatly to find comfort. I've been so thankful for many, like you, who have helped.
I was going to post yesterday, but waited and thought sleeping on it would help but it simply got worse and all day yesterday people stopped me to ask how i was, what the doctor's said, or they called and gave me suggestions to do, eat or not to eat or to drink take or see that would heal me and I just about lost it, seriously.
There's one problem with being open and honest, or having visible symptoms and that's that everyone and their brother has their own say in your travel to your diagnosis and it can be draining.
And then we had to schedule this seizure obs. now istead of waiting and i just needed input from ya'll.
~Sunnytoday~
LULU
Your name makes me this of Hawii, :)
I will call Dr. S tomorrow, she was out of the office today and see about doing it at uab. my fear is the results won't transfer like that VEP didn't. I realllllly hope it will work if we go that way though.
the falling thing is getting scary, but I'm just getting better at spinning like a ballerina too try to avoid it and my parents are getting good reflexes to catch me if they are near. so far i haven't broke any bones just stuff. i cried all over the macaronie i spilled---- twice, once in the pantry and the other time alllll over the floors.
I am hoping to find a counselor this week yet... do remember me as that's a scary thought too. I'm glad that you think it's a good idea, I just finally the other night was like, HELP, i need help who can i go to for help, and that popped into my head.:)
~Sunnytoday~
Your name makes me this of Hawii, :)
I will call Dr. S tomorrow, she was out of the office today and see about doing it at uab. my fear is the results won't transfer like that VEP didn't. I realllllly hope it will work if we go that way though.
the falling thing is getting scary, but I'm just getting better at spinning like a ballerina too try to avoid it and my parents are getting good reflexes to catch me if they are near. so far i haven't broke any bones just stuff. i cried all over the macaronie i spilled---- twice, once in the pantry and the other time alllll over the floors.
I am hoping to find a counselor this week yet... do remember me as that's a scary thought too. I'm glad that you think it's a good idea, I just finally the other night was like, HELP, i need help who can i go to for help, and that popped into my head.:)
~Sunnytoday~
We all join this forum for one reason or another, sometimes to help ourselves but later we realize we are there to help others too. You have helped me a lot with your encouraging words when I was upset or down and now I'm here to help you too.
We are frustrated with being without a diagnosis and trying to figure out what course to take when the tests are not putting us in a definite diagnosis box. Pray on it tonight, go to bed and sleep peacefully and an answer will be there in the morning, God willing. You and your family will figure out the right steps to take next. If it means going for the testing and be admitted into the seizure unit for several days, then do what you need to do to make that happen. If you decide to wait and take a breather for a few weeks, then that could be another option. But whatever you do, do it without any hesitation or second guessing yourself. Trust your instincts.
Many, many hugs coming your way.
Julie
We are frustrated with being without a diagnosis and trying to figure out what course to take when the tests are not putting us in a definite diagnosis box. Pray on it tonight, go to bed and sleep peacefully and an answer will be there in the morning, God willing. You and your family will figure out the right steps to take next. If it means going for the testing and be admitted into the seizure unit for several days, then do what you need to do to make that happen. If you decide to wait and take a breather for a few weeks, then that could be another option. But whatever you do, do it without any hesitation or second guessing yourself. Trust your instincts.
Many, many hugs coming your way.
Julie
Thank you.
I am trying to rest in Him, and believe me, I've gotten much closer to the Lord through all of this than I could ever imagine, even this last week.
I just do not feel my normal self right now, even though I feel very loved and supported, etc. :)
I do hope that some-one will be able to at least give my muddle brain some insight on my first post.
Thank you so much all of you for your support, here I feel supported without feeling pity or constant hovering or that sort of thing. I'm so thankful for that, i never feel like screaming here. :)
~sunnytoday~
I am trying to rest in Him, and believe me, I've gotten much closer to the Lord through all of this than I could ever imagine, even this last week.
I just do not feel my normal self right now, even though I feel very loved and supported, etc. :)
I do hope that some-one will be able to at least give my muddle brain some insight on my first post.
Thank you so much all of you for your support, here I feel supported without feeling pity or constant hovering or that sort of thing. I'm so thankful for that, i never feel like screaming here. :)
~sunnytoday~
Sunny,
Can you check with the NY doctors and ask them if you can do the seizure study in Alabama? They know the expense of traveling to NY and perhaps they can manage the test protocol long distance. I would stress to them that you prefer to have it done at UAB and then return to NYU for further consultation.
You are not the first I have heard say the specialists want their own tests run even though you have already had them - that's why I had to do a second EMG. And isn't it standard that CC and Mayo don't even want your other test results - they do everything over with their own people? Irritating isn't it?
Be very careful with all the falling - that's a lot of times to go down in a day.
Counseling sounds like an excellent idea to help you sort out all the c rap that is being tossed at you from every direction. You need an impartial professional to walk you through this minefield you're in.
Try to sleep on this and tomorrow perhaps the answers will be clear for you,
My best, Lulu
Can you check with the NY doctors and ask them if you can do the seizure study in Alabama? They know the expense of traveling to NY and perhaps they can manage the test protocol long distance. I would stress to them that you prefer to have it done at UAB and then return to NYU for further consultation.
You are not the first I have heard say the specialists want their own tests run even though you have already had them - that's why I had to do a second EMG. And isn't it standard that CC and Mayo don't even want your other test results - they do everything over with their own people? Irritating isn't it?
Be very careful with all the falling - that's a lot of times to go down in a day.
Counseling sounds like an excellent idea to help you sort out all the c rap that is being tossed at you from every direction. You need an impartial professional to walk you through this minefield you're in.
Try to sleep on this and tomorrow perhaps the answers will be clear for you,
My best, Lulu
Hi Confused - I mean Sunny-B!
When I've been faced with decisions like this and I have make them quickly, I fret, I doubt, I search the earth for answers, but in the end, it's what Amyloo says, just have take a deep breath, dive in, and trust in him.
QUICK decisions are tough, but once you make it, you'll feel some relief. Relief that you are not fretting over the decision anymore. You may still fret over the study and all that you have gone through so far, and what they are going to do next to dx you, etc.
But, at least "this" decision will be done and over with for today.
You can do this honey - we're pulling for you when you are not able to!
-Shell
When I've been faced with decisions like this and I have make them quickly, I fret, I doubt, I search the earth for answers, but in the end, it's what Amyloo says, just have take a deep breath, dive in, and trust in him.
QUICK decisions are tough, but once you make it, you'll feel some relief. Relief that you are not fretting over the decision anymore. You may still fret over the study and all that you have gone through so far, and what they are going to do next to dx you, etc.
But, at least "this" decision will be done and over with for today.
You can do this honey - we're pulling for you when you are not able to!
-Shell
Ok, Quix is here on the west coast with me; it is 6:00pm. She is usually a night forum person. Give it a couple hours; I bet she pops up. I am praying for you honey. Remember, He knows what you need before you even ask for it. God WILL give you guidance on this. Love, Amy
Amy,
Yes, we have to book tickets to NY, set up return appts and get the NY hosp. stay set up, or ask to do it here in AL and it's a lot of insurance stuff, it's covered in NY but at 2x the cost if i remember right. I want to do it here in AL if we do it at all, I don't even know if I want it done. I just don't know. :)
~Sunnytoday~
Yes, we have to book tickets to NY, set up return appts and get the NY hosp. stay set up, or ask to do it here in AL and it's a lot of insurance stuff, it's covered in NY but at 2x the cost if i remember right. I want to do it here in AL if we do it at all, I don't even know if I want it done. I just don't know. :)
~Sunnytoday~
Hi Sweetie, I have nothing to offer on figuring out the medical stuff. Why does the hospital need an answer by tomorrow? Is the stay covered by insurance? I cannot believe you have so stinken much to deal with. Reach up my friend. You know He is there. Love to you, Amy
hmmm...
sorry if this is too random, but my thoughts get all scattered sometimes. :)
I wasn't going to post, but I had another funky symptom today, don't ask i won't tell, and yesteray I feel four times and today about five times, and it made me think, and I realize I can't just wish it all away and yet I can't make them figure it out any faster, so I just have to cope and how hard this coping is mentally. Physically it's just slowly going downhill like the norm. but mentally, wow, I keep thinking now I'm going to "get over this" and every day people are asking me how I'm doing, did the doctor's find anything and I just want to SCREAMMMM....STOP!!!!
I'm so sorry, I feel terrible for posting is such as shape.
BUT..... MY PARENTS NEED AN ANSWER BY TOMORROW ABOUT THE HOSPITAL OBSERVATION THING FOR THE SEIZURES.... AND I FEEL SO CONFUSED ABOUT IT AND EVERYTHING.
I am going to look into counseling of some sort and perhaps go on a few day trip somewhere to just relax at a friends house, maybe that will help this all, by the way, so mentally hopefully i will be in better shape soon.
~Sunnytoday~
sorry if this is too random, but my thoughts get all scattered sometimes. :)
I wasn't going to post, but I had another funky symptom today, don't ask i won't tell, and yesteray I feel four times and today about five times, and it made me think, and I realize I can't just wish it all away and yet I can't make them figure it out any faster, so I just have to cope and how hard this coping is mentally. Physically it's just slowly going downhill like the norm. but mentally, wow, I keep thinking now I'm going to "get over this" and every day people are asking me how I'm doing, did the doctor's find anything and I just want to SCREAMMMM....STOP!!!!
I'm so sorry, I feel terrible for posting is such as shape.
BUT..... MY PARENTS NEED AN ANSWER BY TOMORROW ABOUT THE HOSPITAL OBSERVATION THING FOR THE SEIZURES.... AND I FEEL SO CONFUSED ABOUT IT AND EVERYTHING.
I am going to look into counseling of some sort and perhaps go on a few day trip somewhere to just relax at a friends house, maybe that will help this all, by the way, so mentally hopefully i will be in better shape soon.
~Sunnytoday~
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