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My 4/28 neuro appt
Apr 29, 2009 11:16AM
- 13 comments
First I want to thank everyone for their prayers and well wishes. They really mean a lot. Sometimes it is the only bright spot in the whole process, the knowing others care.
I have mixed emotions on yesterday's appt with the neurologist. The neuro I saw at the clinic was a second year resident. When he came in to the exam room I gave him my one page timeline with a short cover letter saying who I was, who I am, and what I am looking for in a doctor. I will post it at the end of the entry. I told him what it was and that I wanted him to take the time to read it as I, with my cognitive difficulties, often forgot relevant points or presented them in such a mixed manner they were hard to follow.
He laid it to the side said, thank you, and began with the questions. Here is the kicker, the report from the neuro back in Feb. who said it was all in my head, was in the chart. I had not planned on this even though I should have known it would be there. Dr. O said, I see you were here back in Feb. What has changed since then that causes your doctor to send you back to us. I said, Because I still haven't any answers and things may not be worse at this time but they are not better. He goes on to tell me I have seen Dr. S the best there is in cognitive disorders and that he is not going to be able to do more for me than Dr. S in that area. My heart is in my throat. I am thinking this is a wasted trip. I tell him it is not only about the cognitive. I was sent to Dr S by my neuro because he wanted to rule out other memory disorders and that Dr S told me he saw no sign of any of the fatal brain disorders but that doesn't explain the physical issues. He says okay as long as we can agree upon that.
Okay he says and begins asking questions, taking history and gaining info on my treatment at this point. Some routine, some more detailed. He asked if I had ever had an LP. I said no. He asks if I am still seeing Dr A, you know what I think A stands for :D I told him no i wasn;t . He asks why. I consider than say do you want the truth or are you just asking. He says no I want the truth. I reply, when I got my notes from Dr A they were filled with things he said he did and he hadn't and I was not getting any answers. (Dr O is a young man who is from a small town abt 10 miles from here..maybe he know of A)
He then does a fairly good neurological exam.
When I tracked the pen my eyes skipped as I tried to track it to the left and up. As he continued and moved back to the center my nystagmus began and there was not any fixed suppression. I also messed up twice on my peripheral vision test. My reflexes were brisk, He asked me if they were always that brisk...lol...I didn't know they were brisk. I couldn't lift my legs off the table with them swung over the edge. He said go ahead lift them. I said, that is it. He looked confused and repeated himself. I guess he thought my cognitve issues were raising their head. I looked at him and said, sorry, that is as far as they go. He then says okay let's lay you on the table. My legs were ataxic. I think he was surprised. He then does the babinski thing and there was no reaction on either foot. I know this not considered abnormal but before all this happened I couldn't stand for someone to touch the bottoms of my feet. Not only did my feet recoil my whole leg would pull away.
Then there was the pinprick test. The sensation on my left side is greatly reduced. He would repeat, tell me when it feels like it does on the other side. I would say, I will but it isn't there yet. Okay, Let's try this again. I don't know why he thought again was going to be any different and it wasn't.
I told him I had a positive Romsberg every time. He didn't do one nor check my gait or ask me to walk tandem or backwards. I had told him that I was taking PT and had seen some improvement because of months of therapy.
After the exam he took my disc with my MRIs, ect. and left the room to look at them. He also took my time line and said I will look at this while I am out.
When he came back he came back with one of the Clinic's MS Specialist, Dr. H. Dr. H introduces himself then says, I don't think you have MS at this time. I smiled and said well that is good news, so can you tell why you think I do not have MS. He replies, the symptoms don't match. I am trying to keep my mouth from dropping open.
Then the bomb drops. He says, you saw Dr. S in Feb. Yes I replied, and he thought it was all in my head. Dr. H says, so did he ask you to see a psychiatrist. I said, he did and though I am not under the care of a psychiatrist I do have a counselor who is a very credentialed and respected clinical psychologist who does not feel my symptoms are all in my head.
I then look at him and say, You know it would take an idiot to want to struggle with the issues I do. I don't want MS. What I do want is answers or better yet for you to look at me and say here is a little pill. Take it for 3 weeks and everything will be all better. Under his breath he says unfortunately we don't have that for sale yet....and I smiled.
He then discusses my neuro/psych eval. He wanted to know what was found. Several areas of deficit which is indicative of white brain matter disease, inc MS. He asks who did the eval. I tell him Dr A (not the same Dr A as my last neuro) who did it is very respected, credentialed and published neuro-psychologist. Dr H now wants to repeat the eval for "comparison". He also wants to do another MRI for "comparison". He then shakes my hand and leaves the room. This whole time, you guys would be proud of me, I looked him directly in the eyes and never flinched or backed down.
Dr. O wrote the orders. I watched him enter them. For the MRI he entered, weakness, numbness, and loss of vision. He also ordered an EEG to rule out seizures.
While Dr O wrote the orders I said I have a question. He says yes? I say, let's say it is not MS, then where do we go from here? He says that is a really good question, I am going to put on this neuro-psych eval to do a depression screening. I smile and say, I know depression. I been there before and I can tell you this isn't it. In 2001 I was depressed but not now. He says, I read, Dr S notes while I was out of hte room and I can see why. You had a lot of stuff going on then. I looked at him and said, I am not an idiot and I can tell you I am not depressed, I am not malingering, and I do not have psychosomatic symptoms, nor is this a conversion disorder and my CLINICAL psychologist agrees with me. And I smile sweetly :)
He then says something that opens the door and I say why do you think it isn't MS. He says well there are certain things we would expect form the MRI and we didn't see them on yours. and apparently neither did Dr S. I smiled and said, Dr S said they were too noisy to read, maybe that is because they were done on a 1.5t. Confused looking, he says, Well they were noisy but we could read them. He then says your EVPs that you had done here were normal with one small exception. If it was MS your EVPs would be abnormal. I don't have an argument for this so I just say, Really? as though I am thinking about this.
I then say, about the MRI? Do you guys have a 3t or a 1.5t? He looks at me and says we have both. But it is the luck of the draw which one you get. I say, but the 3t shows so much more. I just can't believe the difference in the pictures. He says, we are capable of reading both. I answer, I am sure you are but you have to admit the 3t does a better job. He just looks at me and says, yes. I got the impression he wanted me to leave at that time. I stood shook his hand, said I want to thank you for your interest and I look forward to seeing you again.
So I left there with my orders.
My MRI and EEG is scheduled for May 8, that is next Fri. I am contemplating calling UK and canceling. I could then ask the orders be faxed to my GP. I could then set up an appt for the MRI with KDMC where they have a 3t. KDMC is only 70 miles from here as opposed to 120. That way I would be sure I got what I wanted. I assume I can get the EEG at HRMC, our local hospital.
So I apologize for this being so long but it is also for my benefit so I can remember what happened, what was said, what I asked and got answered. However, if you have taken the time to read this please let me know what you think. Do I stand a chance here or has Dr S notes already made their minds up? I am going to send a release requesting his notes and summary. I will try to get that out tomorrow.
As promised here is the cover letter I used:
Dr. Owens:
I have prepared a time-line of my symptoms in the hopes it will assist you in making a diagnosis.
Before my symptoms appeared I was an active, intelligent and confident woman. I put my self through college while raising 2 boys as a single mother. I graduated with 197 hours and a 3.92 GPA. I had one A and one C, both of which I had taken at my choosing.
After graduating I worked with individuals who had mental retardation/developmental disabilities and/or a chronic mental illness. I rose quickly through my ranks. Within a year I was working in administration, within two I was the Associate Director of a Community Care MR/DD Program. At the same time I served as the Associate Director of Operations at an 80 bed personal care home for the chronically mentally ill. I was responsible for 362 staff and over 200 clients. I worked with authorities on both the local and state levels to develop policies and programming.
I was physically active. I loved being outside. I loved gardening and working in my yard.
Since the onset of my symptoms in winter of 2007 I find myself unable to complete the simplest task, or to even hold a simple conversation. I count myself lucky on the days I can form a sentence or type a paragraph. I now understand that walking is a gift, one we take for granted. Walking is now for me a conscious thought. This year my flower beds are empty and my garden is neglected.
I am looking for a doctor who is willing to take the time to listen to what I have to say and who would welcome me to participate in my health care. This doctor would also perform thorough testing and share with me the results.
In a perfect world it would be a doctor who cares about his/her patients, offers them respect, and strives to find an answer to the problems they are facing. I hope that doctor is you.
Thank you for taking the time to review my time-line and for accepting me as a patient.
Sincerely,
In 10 pt font it takes abt a third of a page.
I have mixed emotions on yesterday's appt with the neurologist. The neuro I saw at the clinic was a second year resident. When he came in to the exam room I gave him my one page timeline with a short cover letter saying who I was, who I am, and what I am looking for in a doctor. I will post it at the end of the entry. I told him what it was and that I wanted him to take the time to read it as I, with my cognitive difficulties, often forgot relevant points or presented them in such a mixed manner they were hard to follow.
He laid it to the side said, thank you, and began with the questions. Here is the kicker, the report from the neuro back in Feb. who said it was all in my head, was in the chart. I had not planned on this even though I should have known it would be there. Dr. O said, I see you were here back in Feb. What has changed since then that causes your doctor to send you back to us. I said, Because I still haven't any answers and things may not be worse at this time but they are not better. He goes on to tell me I have seen Dr. S the best there is in cognitive disorders and that he is not going to be able to do more for me than Dr. S in that area. My heart is in my throat. I am thinking this is a wasted trip. I tell him it is not only about the cognitive. I was sent to Dr S by my neuro because he wanted to rule out other memory disorders and that Dr S told me he saw no sign of any of the fatal brain disorders but that doesn't explain the physical issues. He says okay as long as we can agree upon that.
Okay he says and begins asking questions, taking history and gaining info on my treatment at this point. Some routine, some more detailed. He asked if I had ever had an LP. I said no. He asks if I am still seeing Dr A, you know what I think A stands for :D I told him no i wasn;t . He asks why. I consider than say do you want the truth or are you just asking. He says no I want the truth. I reply, when I got my notes from Dr A they were filled with things he said he did and he hadn't and I was not getting any answers. (Dr O is a young man who is from a small town abt 10 miles from here..maybe he know of A)
He then does a fairly good neurological exam.
When I tracked the pen my eyes skipped as I tried to track it to the left and up. As he continued and moved back to the center my nystagmus began and there was not any fixed suppression. I also messed up twice on my peripheral vision test. My reflexes were brisk, He asked me if they were always that brisk...lol...I didn't know they were brisk. I couldn't lift my legs off the table with them swung over the edge. He said go ahead lift them. I said, that is it. He looked confused and repeated himself. I guess he thought my cognitve issues were raising their head. I looked at him and said, sorry, that is as far as they go. He then says okay let's lay you on the table. My legs were ataxic. I think he was surprised. He then does the babinski thing and there was no reaction on either foot. I know this not considered abnormal but before all this happened I couldn't stand for someone to touch the bottoms of my feet. Not only did my feet recoil my whole leg would pull away.
Then there was the pinprick test. The sensation on my left side is greatly reduced. He would repeat, tell me when it feels like it does on the other side. I would say, I will but it isn't there yet. Okay, Let's try this again. I don't know why he thought again was going to be any different and it wasn't.
I told him I had a positive Romsberg every time. He didn't do one nor check my gait or ask me to walk tandem or backwards. I had told him that I was taking PT and had seen some improvement because of months of therapy.
After the exam he took my disc with my MRIs, ect. and left the room to look at them. He also took my time line and said I will look at this while I am out.
When he came back he came back with one of the Clinic's MS Specialist, Dr. H. Dr. H introduces himself then says, I don't think you have MS at this time. I smiled and said well that is good news, so can you tell why you think I do not have MS. He replies, the symptoms don't match. I am trying to keep my mouth from dropping open.
Then the bomb drops. He says, you saw Dr. S in Feb. Yes I replied, and he thought it was all in my head. Dr. H says, so did he ask you to see a psychiatrist. I said, he did and though I am not under the care of a psychiatrist I do have a counselor who is a very credentialed and respected clinical psychologist who does not feel my symptoms are all in my head.
I then look at him and say, You know it would take an idiot to want to struggle with the issues I do. I don't want MS. What I do want is answers or better yet for you to look at me and say here is a little pill. Take it for 3 weeks and everything will be all better. Under his breath he says unfortunately we don't have that for sale yet....and I smiled.
He then discusses my neuro/psych eval. He wanted to know what was found. Several areas of deficit which is indicative of white brain matter disease, inc MS. He asks who did the eval. I tell him Dr A (not the same Dr A as my last neuro) who did it is very respected, credentialed and published neuro-psychologist. Dr H now wants to repeat the eval for "comparison". He also wants to do another MRI for "comparison". He then shakes my hand and leaves the room. This whole time, you guys would be proud of me, I looked him directly in the eyes and never flinched or backed down.
Dr. O wrote the orders. I watched him enter them. For the MRI he entered, weakness, numbness, and loss of vision. He also ordered an EEG to rule out seizures.
While Dr O wrote the orders I said I have a question. He says yes? I say, let's say it is not MS, then where do we go from here? He says that is a really good question, I am going to put on this neuro-psych eval to do a depression screening. I smile and say, I know depression. I been there before and I can tell you this isn't it. In 2001 I was depressed but not now. He says, I read, Dr S notes while I was out of hte room and I can see why. You had a lot of stuff going on then. I looked at him and said, I am not an idiot and I can tell you I am not depressed, I am not malingering, and I do not have psychosomatic symptoms, nor is this a conversion disorder and my CLINICAL psychologist agrees with me. And I smile sweetly :)
He then says something that opens the door and I say why do you think it isn't MS. He says well there are certain things we would expect form the MRI and we didn't see them on yours. and apparently neither did Dr S. I smiled and said, Dr S said they were too noisy to read, maybe that is because they were done on a 1.5t. Confused looking, he says, Well they were noisy but we could read them. He then says your EVPs that you had done here were normal with one small exception. If it was MS your EVPs would be abnormal. I don't have an argument for this so I just say, Really? as though I am thinking about this.
I then say, about the MRI? Do you guys have a 3t or a 1.5t? He looks at me and says we have both. But it is the luck of the draw which one you get. I say, but the 3t shows so much more. I just can't believe the difference in the pictures. He says, we are capable of reading both. I answer, I am sure you are but you have to admit the 3t does a better job. He just looks at me and says, yes. I got the impression he wanted me to leave at that time. I stood shook his hand, said I want to thank you for your interest and I look forward to seeing you again.
So I left there with my orders.
My MRI and EEG is scheduled for May 8, that is next Fri. I am contemplating calling UK and canceling. I could then ask the orders be faxed to my GP. I could then set up an appt for the MRI with KDMC where they have a 3t. KDMC is only 70 miles from here as opposed to 120. That way I would be sure I got what I wanted. I assume I can get the EEG at HRMC, our local hospital.
So I apologize for this being so long but it is also for my benefit so I can remember what happened, what was said, what I asked and got answered. However, if you have taken the time to read this please let me know what you think. Do I stand a chance here or has Dr S notes already made their minds up? I am going to send a release requesting his notes and summary. I will try to get that out tomorrow.
As promised here is the cover letter I used:
Dr. Owens:
I have prepared a time-line of my symptoms in the hopes it will assist you in making a diagnosis.
Before my symptoms appeared I was an active, intelligent and confident woman. I put my self through college while raising 2 boys as a single mother. I graduated with 197 hours and a 3.92 GPA. I had one A and one C, both of which I had taken at my choosing.
After graduating I worked with individuals who had mental retardation/developmental disabilities and/or a chronic mental illness. I rose quickly through my ranks. Within a year I was working in administration, within two I was the Associate Director of a Community Care MR/DD Program. At the same time I served as the Associate Director of Operations at an 80 bed personal care home for the chronically mentally ill. I was responsible for 362 staff and over 200 clients. I worked with authorities on both the local and state levels to develop policies and programming.
I was physically active. I loved being outside. I loved gardening and working in my yard.
Since the onset of my symptoms in winter of 2007 I find myself unable to complete the simplest task, or to even hold a simple conversation. I count myself lucky on the days I can form a sentence or type a paragraph. I now understand that walking is a gift, one we take for granted. Walking is now for me a conscious thought. This year my flower beds are empty and my garden is neglected.
I am looking for a doctor who is willing to take the time to listen to what I have to say and who would welcome me to participate in my health care. This doctor would also perform thorough testing and share with me the results.
In a perfect world it would be a doctor who cares about his/her patients, offers them respect, and strives to find an answer to the problems they are facing. I hope that doctor is you.
Thank you for taking the time to review my time-line and for accepting me as a patient.
Sincerely,
In 10 pt font it takes abt a third of a page.
Good for you for standing your ground. I want you to go with me to my appointments :)
Sorry you did not get anywhere. Relax some & take care.
Janette
Sorry you did not get anywhere. Relax some & take care.
Janette
Terry,
I think you did a great job of standing your ground and attempting to get them to understand you. They sound hard-headed. My personal belief is for you to find another neuro since these guys seem to have you diagnosed before they even see you.
I know you worked hard getting your timeline in order and mentally preparing. You did a great job. It's the neuros who fail see the whole picture.
BTW, the neuro I found in Atlanta is great. Road trip anyone?
Take care!
Hugs,
Ren
I think you did a great job of standing your ground and attempting to get them to understand you. They sound hard-headed. My personal belief is for you to find another neuro since these guys seem to have you diagnosed before they even see you.
I know you worked hard getting your timeline in order and mentally preparing. You did a great job. It's the neuros who fail see the whole picture.
BTW, the neuro I found in Atlanta is great. Road trip anyone?
Take care!
Hugs,
Ren
sounds like you asked the right questions and stayed calm with all the remarks... when was you MRI taken previously..how long ago... I wonder if there will be changes in this one...I hope you find answers for your symptoms asap.. you don't need to deal with this... but I think you did very well at your appt...
let us know how things go and hang in there.
wobbly
undx
let us know how things go and hang in there.
wobbly
undx
Terry, you did a great job!! Absolutely top notch. I'm very proud of you, and hope that this forum played a little role in helping with your determination.
My first problem with your story is that it was only a resident who did a lot of the examination. A resident is not a neuro. A neuro in training, yes, but he has a lot to learn. So then in comes Dr. H., who I guess is the hotshot. This all seems so familiar to me. At the big teaching facilities they think that only they know how to do tests, including MRIs. It's such a waste. As you might guess, I've been through that too. So that's why they've ordered these repeat tests. The thing is, unless you have the repeat testing done there, you may as well kiss that whole facility good-bye. They do what they do, regardless of how ludicrous it may seem to us.
My biggest reaction, though, comes where they say that you have to have abnormal VEPs for MS to be diagnosed. That is patently false.
So I can only recommend that you either go along with them, play their silly game, and see what develops, or cut loose and forget about them. There's no in-between. But if you decide to go along with what they say (and there's some merit in that), then ask for a repeat of the VEP. After all, from their viewpoint that may have been done wrong too.
I don't have a good suggestion for you at this point. But still I want to commend you again. You were absolutely marvelous. I wish the whole session had been taped.
ess
My first problem with your story is that it was only a resident who did a lot of the examination. A resident is not a neuro. A neuro in training, yes, but he has a lot to learn. So then in comes Dr. H., who I guess is the hotshot. This all seems so familiar to me. At the big teaching facilities they think that only they know how to do tests, including MRIs. It's such a waste. As you might guess, I've been through that too. So that's why they've ordered these repeat tests. The thing is, unless you have the repeat testing done there, you may as well kiss that whole facility good-bye. They do what they do, regardless of how ludicrous it may seem to us.
My biggest reaction, though, comes where they say that you have to have abnormal VEPs for MS to be diagnosed. That is patently false.
So I can only recommend that you either go along with them, play their silly game, and see what develops, or cut loose and forget about them. There's no in-between. But if you decide to go along with what they say (and there's some merit in that), then ask for a repeat of the VEP. After all, from their viewpoint that may have been done wrong too.
I don't have a good suggestion for you at this point. But still I want to commend you again. You were absolutely marvelous. I wish the whole session had been taped.
ess
You may feel like you got no where with this, but I see it quite the opposite. Dr. S was ready to have you dismissed by these doctors and with your preparation, composure and facts, you prevented that from happening. Good for you to persuade these neuros to reconsider your symptoms. You handled this in the best way possible, it sounds like to me!
If you can do the MRI closer to home, it sure makes sense instead of making the longer drive. An MRI is ok, regardless of where it is being done at, right? :-)
I imagine this had to have been exhausting - pat yourself on the back for a job well done.
my best,
Laura
If you can do the MRI closer to home, it sure makes sense instead of making the longer drive. An MRI is ok, regardless of where it is being done at, right? :-)
I imagine this had to have been exhausting - pat yourself on the back for a job well done.
my best,
Laura
Reading through your journal, reminds me of my experience that I had through OSU neurology department. It was a very bad experience. They said my symptoms didn't sound like MS. Many other doctors don't agree with that. I guess that was the first time I ever had a doctor tell me that my symptoms were due to stress since all the blood work was normal and the lesions in my brain were non specific. They didn't even take in to account that the MRIs that I brought with me were of bad quality. They were done on an open MRI 0.7 T strength. One they found that out, they said no wonder they were so badly detailed and ordered new ones.
What gets me fired up so much, is when doctors don't look at the whole picture. They rely too much on the blood work or the MRIs to give all the answers when they aren't 100% in giving those answers. I realize that you have to have some evidence of MS...but heck...Do you really have to damage yourself more to get DX or How much do you have to go through before they come up with an answer? If not MS..then what? and they don't give you an answer except for the..oh it must be in your head DX. That's a bunch of caca!!!
Sorry..I get a little mad...because it does remind me too much of what happen to me and I know how much it did hurt. I'm glad you stood up to them. Way to go! I'm so proud of you. That take some guts, and you have them.
When it came to my orders from OSU, I found out prior that they ordered my new MRIs on a 1.5 machine and I figured there is plenty of those around here where I live, so I canceled my appointment rather than driving 2 hours away.
I would follow your heart on what you should do.
What gets me fired up so much, is when doctors don't look at the whole picture. They rely too much on the blood work or the MRIs to give all the answers when they aren't 100% in giving those answers. I realize that you have to have some evidence of MS...but heck...Do you really have to damage yourself more to get DX or How much do you have to go through before they come up with an answer? If not MS..then what? and they don't give you an answer except for the..oh it must be in your head DX. That's a bunch of caca!!!
Sorry..I get a little mad...because it does remind me too much of what happen to me and I know how much it did hurt. I'm glad you stood up to them. Way to go! I'm so proud of you. That take some guts, and you have them.
When it came to my orders from OSU, I found out prior that they ordered my new MRIs on a 1.5 machine and I figured there is plenty of those around here where I live, so I canceled my appointment rather than driving 2 hours away.
I would follow your heart on what you should do.
I am setting here eating red beans and rice with Cajun sausage while reading your responses and I can't say thanks enough. It is good to hear others thought I did okay. I was beginning to wonder had I pushed to hard. I know there are others who have been at this much longer than I have and I wonder how they do it. My heart goes out to them because there are days I just want to say sc**w it and go on with my life.
I have worked so hard trying to keep my mind and body working as much as possible. I find it hurtful, infuriating, and insulting to be told it is all in my head. I have better things to do with my life than spend it in doctors offices looking for a dx.
I am going to wait until tomorrow and then I will see about getting my orders faxed so I can go to KDMC. I really want that 3t. If I take the chance and my draw is the 1.5t then I have lost my chance. I may even call the imaging center where I am now scheduled and ask them some questions. I don't mind the 240 mile round trip drive if it is productive, but I can't see traveling that far for a 1.5t when there is one 10 minutes form my home.
terry
I have worked so hard trying to keep my mind and body working as much as possible. I find it hurtful, infuriating, and insulting to be told it is all in my head. I have better things to do with my life than spend it in doctors offices looking for a dx.
I am going to wait until tomorrow and then I will see about getting my orders faxed so I can go to KDMC. I really want that 3t. If I take the chance and my draw is the 1.5t then I have lost my chance. I may even call the imaging center where I am now scheduled and ask them some questions. I don't mind the 240 mile round trip drive if it is productive, but I can't see traveling that far for a 1.5t when there is one 10 minutes form my home.
terry
Hi Terry, I'm sorry to hear you still didn't get any answers as of yet but I'm proud of you for standing your ground! I wonder is you had the same Dr. H as I did> He was the MS specialist there, that I mentioned to you.Please dont be discouraged & don't give up!! I'm going through the smae thing with what sounds like some of the same Drs. there. I found it interesting that I got an invitation to a MS seminar from Dr. H (if its the same one) a year after he simply looked in my eyes & tested my reflexes & told me it wasn't MS (so why did he send me this invitation?). I too don't want anything to be wrong but we know our bodies & know something is wrong & we are not benefiting from any kind of treatment at all. I will try to keep you posted about the Drs. I see & mabey it will save you the trouble also. I hear very exciting things about Dr. Leung & hopefully mabey I will get to see him soon & let you know how it goes. I have to drive to Lexington (about 60 mi. for me) also as I have lost all faith in my local Drs.(Danville area). I pray that we both find answers soon & can get some sort of treatment that hopefully will greatly improve our quality of life. I also am an outdoors person who was very active, I worked constuction for 15 yrs. while raising 4 children alone, & this just hit me like a truck & has just devastated my quality of life. I went from a independent person to someone who can't complete the simplest of tasks. I get so tired of hearing "oh its anxiety" or "oh could it be depression"!! ell the Drs make you anxious & depressed enough coupled with the illnesss, you feel like shouting wake up & listen to me please!! Again please don't lose heart, there are others of us out there so we know we're not crazy!! I'll be praying for you! Please keep me posted & hopefully we can help each other!! God bless you!
Tammy, it was the same doctor you mentioned. My GP had tried to schedule my appt with him but he doesn't take my insurance so I ended up with Dr O. If you send me a PM I can tell you his name.
I would appreciate it if you keep me updated. I would really like to know what you think of the new neuro. Have you scheduled your appt yet?
And like you I can empathize with your situation. We all do have to hang in there and that is were the support we get on the forum comes in. Without it I think I would give up. I try not to stress my family by complaining all the time. They know my problems but I try to keep things as normal as possible.
Stay in touch
terry
I would appreciate it if you keep me updated. I would really like to know what you think of the new neuro. Have you scheduled your appt yet?
And like you I can empathize with your situation. We all do have to hang in there and that is were the support we get on the forum comes in. Without it I think I would give up. I try not to stress my family by complaining all the time. They know my problems but I try to keep things as normal as possible.
Stay in touch
terry
Has anyone got any advice for me to help tackle the neuro bullies?
I have been living with a diagnosed m.e. for 18mth but feel its a miss-dia m.s.and my g.p agrees !
I have done time line from pre- birth to present and the usual list of symptoms which I have had for many years now.
When last at the neuro with the m.e..he put it down to stress and didnt even bother to listen to the fact that I had been "toe dragging" for months(totally now !).... seems from all accounts this is nothing new from all your comments that I have been reading on here!.... I am a newbie to this site and appreciate all advice as I am just now reaching out from isolation !
I also have fybromyalgia and thorasic outlet syndrome ....as I have an extra c7 vert...brill ha ?
Any comments and help are greatly recieved !
I have been living with a diagnosed m.e. for 18mth but feel its a miss-dia m.s.and my g.p agrees !
I have done time line from pre- birth to present and the usual list of symptoms which I have had for many years now.
When last at the neuro with the m.e..he put it down to stress and didnt even bother to listen to the fact that I had been "toe dragging" for months(totally now !).... seems from all accounts this is nothing new from all your comments that I have been reading on here!.... I am a newbie to this site and appreciate all advice as I am just now reaching out from isolation !
I also have fybromyalgia and thorasic outlet syndrome ....as I have an extra c7 vert...brill ha ?
Any comments and help are greatly recieved !
I am very inspired by how you managed this appointment. Thank you so much for sharing the dialogue and progression of events. It is very, very helpful for othere, like me, who are need to face these same types of neuro encounters. This was a lesson in how to effectively and efficiently handle a very complex medical issue.
Bravo to you for being such a good advocate for yourself.
Bravo to you for being such a good advocate for yourself.
Terry, your handling of this whole affair was masterful and a great example of calmly and firmly advocating for yourself in a very intimidating environment. I am proud of you and I think this would make a great "example" Health Page.
My "take" on the visit as it went is not encouraging. I fear that I am too cynical, or maybe it is just that I am sick right now.
Dr. S really did "poison the well." Everyone's first impression seems to be to blindly reassure you and not take your concerns any farther. That is how you treat someone with psychogenic complaints. His comment that there was no MS without positive EP's is blatantly false - to the point that it could be a lie coming from someone at his level. I was outraged that he would try to sneak that one by you.
His repeated comment that "We can read both 1.5T and 3T MRIs" is irrelevant. Of course, they can read them! That isn't the issue. The issue is whether the 1.5T will SHOW all that is there. My spinal cord 1.5T was easily and repeatedly read as normal. The 3T clearly "showed" 6 lesions.
The point about which strength machine you get is a "crapshoot," is a little misleading. When the doctor does not specify, I suspect it is the luck of the draw. I do suspect that a senior physician could request the 3T if he wished. (Maybe not, but my experience says otherwise)
In the face of all of this, you still calmly made some headway. That is wonderful. We'll see where this goes, but I am not hopeful.
Good job and well executed!
Quix
My "take" on the visit as it went is not encouraging. I fear that I am too cynical, or maybe it is just that I am sick right now.
Dr. S really did "poison the well." Everyone's first impression seems to be to blindly reassure you and not take your concerns any farther. That is how you treat someone with psychogenic complaints. His comment that there was no MS without positive EP's is blatantly false - to the point that it could be a lie coming from someone at his level. I was outraged that he would try to sneak that one by you.
His repeated comment that "We can read both 1.5T and 3T MRIs" is irrelevant. Of course, they can read them! That isn't the issue. The issue is whether the 1.5T will SHOW all that is there. My spinal cord 1.5T was easily and repeatedly read as normal. The 3T clearly "showed" 6 lesions.
The point about which strength machine you get is a "crapshoot," is a little misleading. When the doctor does not specify, I suspect it is the luck of the draw. I do suspect that a senior physician could request the 3T if he wished. (Maybe not, but my experience says otherwise)
In the face of all of this, you still calmly made some headway. That is wonderful. We'll see where this goes, but I am not hopeful.
Good job and well executed!
Quix
I feel you did an excellent Job in voicing your opinion on whats best for you! YOU took control of your own health issues and Docs dont like when the patients do this because you insult their intelligence. But they dont think twice about insulting your educated questions, after all...this is the new world of computor knowledge, do they NOT understand?
I applaud you! Well done!
I applaud you! Well done!
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