Aa
Hi everyone!
Just checking back in to let you all know that I am not gone! Been reading some post but found myself needing a mental break from being sick for a while. I am waiting to have my fifth repeat brain MRI on Sept,11th and then to see the neuro for results on Sept, 18th. My new VEP came back normal about three weeks ago!
I have been dealing with a lot of personal things and have been a little emotional lately, so took some time to think it all out! Life doesn't stop for us to be sick, does it? But, I am OK and I am back with you all here now!
I missed all of you while I was hiding, so I thought I needed to come back home, LOL!!!!!!
~Santana~
I have been dealing with a lot of personal things and have been a little emotional lately, so took some time to think it all out! Life doesn't stop for us to be sick, does it? But, I am OK and I am back with you all here now!
I missed all of you while I was hiding, so I thought I needed to come back home, LOL!!!!!!
~Santana~
I think you are right! Going through something like this and surviving with our sanity has to make us a stronger person for having gone through it. I think it can be compared to running in a long race, at the beginning we are stronger then as the finish line approaches our fight starts to wear thin.
If there is one thing I have learned about getting the correct dx, it is that it is not a fast process. The possibilities are vast as I have seen through my own reading on this. The first neuro I saw gave me an MS dx, but it was too rushed and the work up for other mimics was nonexistant. He hadn't even taken a blood test, yet sent me out of his office with a bag of sample injections of Rebiff.
I got a second opionion and then the other testing was done. My LP was negative with no O banding. All bloodwork was negative. This first neuro based his premature MS dx on only the possitive MRI, which I have learned can have many causes including, but not limited to MS.
I have often wondered why didn't I just take the dx while it was offered, but I felt in my gutt that it was too rushed and not supported by enough evidence for a serious dx like MS. Turns out that the next two neuro's would agree with what my gutt was telling me.
This is the reason for my two year delay in getting a dx, truthfully, I don't think they know for sure yet what happened. Like everyone here, I want a dx, but I don't want an incorrect one. So I will wait for the evidence to speak for itself, and I believe that one day it will.
My neuro said that the open heart by pass surgery that I had as a child to correct a birth defect called a PDA could have put those lesions on my brain, but he can't explain what happened in April 2006. I had this medication change(done abruply of a long term med) six weeks before the onset of vision disfunction. I am wondering if maybe I have had these lesions since I had the surgery when I was two, and the vision disfucntion might have been from an adverse reaction to the Paroxetine that I was switched to, which does list optic neuritis and a visual field defect as adverse reactions.
Since I never had a previous MRI prior to all of this to compare to, waiting to see if something new shows up is all that can be done. I have always thought that the medication switch had something to do with this, whether it be from an adverse reaction or a trigger that set off my immune system in a negative way.
But it cannot be prooven with this particular medication because it has never been documented in the medical litature, and this is the answer that all of my doctors have given me when I asked about the new medication that I was started on six weeks before this attack.
My question is if it is on the adverse event sheet for Paroxetine then it must have happened to someone in the test trials or else it would not be listed. So how is it that it has never been documented. Thier answer to this is that the drug companies put everything that anyone in the test trials have during testing of a drug and that doesn't mean that the drug being tested is the cause of a particular side effect. WHAT??
So I have been forced to go through all of this testing for the past two years to watch for changes. I don't know for sure that the Paroxetine or the change of meds caused this, but I am fairly certain that it played a role in it somehow, and even my doctors agree to this saying that it may have been a contributing factor.
The drug company won't even give me the litature on the test subjects who got a visual field defect or optic neuritis during the testing of this drug so I can research what happened to them. They will only release it to a doctor and my doctors don't seem interested in finding out. Afraid of becoming involved in a lawsuit, I am assuming!
It is a vicious cycle that the patient is definately the victim in. Doctors stick together and so do drug companies. A sad but true fact!
But there is a possibility that I had an underlying condition like MS or something else and the medication switch triggered a flare up. It is all a crazy puzzle that I can't figure out, and apparently neither can my doctors!
At least we all have eachother here and we all understand eachother and the struggles that we go through to find out what is wrong with us!
~Santana~
If there is one thing I have learned about getting the correct dx, it is that it is not a fast process. The possibilities are vast as I have seen through my own reading on this. The first neuro I saw gave me an MS dx, but it was too rushed and the work up for other mimics was nonexistant. He hadn't even taken a blood test, yet sent me out of his office with a bag of sample injections of Rebiff.
I got a second opionion and then the other testing was done. My LP was negative with no O banding. All bloodwork was negative. This first neuro based his premature MS dx on only the possitive MRI, which I have learned can have many causes including, but not limited to MS.
I have often wondered why didn't I just take the dx while it was offered, but I felt in my gutt that it was too rushed and not supported by enough evidence for a serious dx like MS. Turns out that the next two neuro's would agree with what my gutt was telling me.
This is the reason for my two year delay in getting a dx, truthfully, I don't think they know for sure yet what happened. Like everyone here, I want a dx, but I don't want an incorrect one. So I will wait for the evidence to speak for itself, and I believe that one day it will.
My neuro said that the open heart by pass surgery that I had as a child to correct a birth defect called a PDA could have put those lesions on my brain, but he can't explain what happened in April 2006. I had this medication change(done abruply of a long term med) six weeks before the onset of vision disfunction. I am wondering if maybe I have had these lesions since I had the surgery when I was two, and the vision disfucntion might have been from an adverse reaction to the Paroxetine that I was switched to, which does list optic neuritis and a visual field defect as adverse reactions.
Since I never had a previous MRI prior to all of this to compare to, waiting to see if something new shows up is all that can be done. I have always thought that the medication switch had something to do with this, whether it be from an adverse reaction or a trigger that set off my immune system in a negative way.
But it cannot be prooven with this particular medication because it has never been documented in the medical litature, and this is the answer that all of my doctors have given me when I asked about the new medication that I was started on six weeks before this attack.
My question is if it is on the adverse event sheet for Paroxetine then it must have happened to someone in the test trials or else it would not be listed. So how is it that it has never been documented. Thier answer to this is that the drug companies put everything that anyone in the test trials have during testing of a drug and that doesn't mean that the drug being tested is the cause of a particular side effect. WHAT??
So I have been forced to go through all of this testing for the past two years to watch for changes. I don't know for sure that the Paroxetine or the change of meds caused this, but I am fairly certain that it played a role in it somehow, and even my doctors agree to this saying that it may have been a contributing factor.
The drug company won't even give me the litature on the test subjects who got a visual field defect or optic neuritis during the testing of this drug so I can research what happened to them. They will only release it to a doctor and my doctors don't seem interested in finding out. Afraid of becoming involved in a lawsuit, I am assuming!
It is a vicious cycle that the patient is definately the victim in. Doctors stick together and so do drug companies. A sad but true fact!
But there is a possibility that I had an underlying condition like MS or something else and the medication switch triggered a flare up. It is all a crazy puzzle that I can't figure out, and apparently neither can my doctors!
At least we all have eachother here and we all understand eachother and the struggles that we go through to find out what is wrong with us!
~Santana~
Oh neat! That is the 1st time MedHelp has censored me! Whoops! Please fill in with your most choice word.....
I see some very similar lines of thinking between us in your post.
I am really fortunate, I am feeling much better lately after oral steroids (despite a cold throwing a wrench in the machine), and only lost about 6 months. But as I start to feel better, I know I am not out of the woods yet.
Time sort of stopped for me, for most of 2008. (I had an earlier shorter attack in Jan.., as well.) The only thing I could think about was what the heck was happening to me, and all of the related feelings of stress and anxiety, and dealing with doctors and tests. I'm sure that sounds pretty familiar to lots of people here. So the rest of my life has been sorely neglected. 2 years is much longer than my ordeal, but I have the same feeling that I need to grieve for the time lost to this. There is no catching up, the time was LOST. That is tough for me.
I also hope that someone else will stumble across my story and be spared even an ounce of frustration. I came here in March 08, when my second attack began, and posted in both the neurology and undiagnosed symptom communities, and later made my way onto this forum, first as a "stalker" and then as a poster. I kept looking for stories about ppl with problems like mine that resolved. It seems that ppl post with problems, and if they get a diagnosis, maybe they post that too. But I still can't find that story about the person who was struggling with symptoms for a longer time (at least many months) who then had them resolve of their own accord and lived happily ever after. I still hope that will be the end to my story, and plan on sharing as much as I can so others can find it and learn from it.
I also felt judged, at least by my first (and most evil) neuro. I am not on any medication, but I answered his question about have I EVER been depressed honestly. I was depressed in high school (yeah, I'm sure that is soooo unique and relevant....) I also think my size and (then) status of a smoker enabled him to feel fine about dismissing me. He wanted to put me on prozac. I asked him if I could naturally achieve a better chemical balance, if that was indeed the problem. He looked me up and down, slowly, in a humiliating manner, and said, in a clearly sarcastic tone, "well, you could do aerobic exercise everyday." Maybe I should thank that *******, as I've quit smoking and lost 35 lbs (and counting). No, I won't thank him. I'll take full credit for that.
I know I am not mentally prepared for a diagnosis, since one is not even close for me right now. But I can understand how being stuck between a rock and a hard place does you no good right now. I try to also think that while this entire situation bites, I must be developing as a person through it and things will all work out in the end, but yeah, I'd like to either get my symptoms further behind me or a diagnosis closer.
Thanks for "listening" and good luck.
I am really fortunate, I am feeling much better lately after oral steroids (despite a cold throwing a wrench in the machine), and only lost about 6 months. But as I start to feel better, I know I am not out of the woods yet.
Time sort of stopped for me, for most of 2008. (I had an earlier shorter attack in Jan.., as well.) The only thing I could think about was what the heck was happening to me, and all of the related feelings of stress and anxiety, and dealing with doctors and tests. I'm sure that sounds pretty familiar to lots of people here. So the rest of my life has been sorely neglected. 2 years is much longer than my ordeal, but I have the same feeling that I need to grieve for the time lost to this. There is no catching up, the time was LOST. That is tough for me.
I also hope that someone else will stumble across my story and be spared even an ounce of frustration. I came here in March 08, when my second attack began, and posted in both the neurology and undiagnosed symptom communities, and later made my way onto this forum, first as a "stalker" and then as a poster. I kept looking for stories about ppl with problems like mine that resolved. It seems that ppl post with problems, and if they get a diagnosis, maybe they post that too. But I still can't find that story about the person who was struggling with symptoms for a longer time (at least many months) who then had them resolve of their own accord and lived happily ever after. I still hope that will be the end to my story, and plan on sharing as much as I can so others can find it and learn from it.
I also felt judged, at least by my first (and most evil) neuro. I am not on any medication, but I answered his question about have I EVER been depressed honestly. I was depressed in high school (yeah, I'm sure that is soooo unique and relevant....) I also think my size and (then) status of a smoker enabled him to feel fine about dismissing me. He wanted to put me on prozac. I asked him if I could naturally achieve a better chemical balance, if that was indeed the problem. He looked me up and down, slowly, in a humiliating manner, and said, in a clearly sarcastic tone, "well, you could do aerobic exercise everyday." Maybe I should thank that *******, as I've quit smoking and lost 35 lbs (and counting). No, I won't thank him. I'll take full credit for that.
I know I am not mentally prepared for a diagnosis, since one is not even close for me right now. But I can understand how being stuck between a rock and a hard place does you no good right now. I try to also think that while this entire situation bites, I must be developing as a person through it and things will all work out in the end, but yeah, I'd like to either get my symptoms further behind me or a diagnosis closer.
Thanks for "listening" and good luck.
You are right, I am in touch with my feelings, perhaps a little too much. But I have always felt things too deeply. And you are right about another thing, my trust has been shaken in doctors, but now I feel more educated about things and feel that maybe I can now hold my own in the presence of an ignorant, noncaring doctor if I ever come across one again!
But mostly, I am grieving over the two years of my life spent in what feels like an internal prison. I know that not being able to drive is not the end of the world, and someone else can drive me, but I can't go anywhere by myself. You would have to know me personally to understand what this means to me. I am the type of person who loves to be with others, but I have a side to me that has to get alone to think, breath, and have some alone time. Being stuck at home has at times felt like being held down to the point that I can't move or breath.
But, I have dealt with that and so far it has not broken me, and I am still getting up! But the anger comes in when I start thinking of how had I been believedd, and not treated pregudicely because I was on an SSRI antidepressant, and passed off as being crazy, which I am not! And had I been given the treatment of IV steriods that is the protocol for what I had in the acute phase, then this two year prison sentence may have only been about six months. Ther is a BIG difference in 6 months of suffering and excrutiating eye and head pain and two years of it untreated!
But now I feel like I am dealing with the anger toward these doctors who played God with my life and health, and I am ready to try to move past the anger and find some kind of good for others out of this injustice!
So I will stay here, and maybe I can prevent this from happening to someone else! Another thing that this time has allowed me to do is to come to terms with a possible MS dx. At first I was so afraid of finding out that I had MS, but now if this does turn out to be MS, I have had the time to try to adjust to getting this dx.
I think it is harder being stuck between dx's than knowing for sure, and the road to the correct dx sure can be a long and hard one, but like the saying goes, " What doesn't kill you will only make you stronger!
Hugs,
~Santana~
But mostly, I am grieving over the two years of my life spent in what feels like an internal prison. I know that not being able to drive is not the end of the world, and someone else can drive me, but I can't go anywhere by myself. You would have to know me personally to understand what this means to me. I am the type of person who loves to be with others, but I have a side to me that has to get alone to think, breath, and have some alone time. Being stuck at home has at times felt like being held down to the point that I can't move or breath.
But, I have dealt with that and so far it has not broken me, and I am still getting up! But the anger comes in when I start thinking of how had I been believedd, and not treated pregudicely because I was on an SSRI antidepressant, and passed off as being crazy, which I am not! And had I been given the treatment of IV steriods that is the protocol for what I had in the acute phase, then this two year prison sentence may have only been about six months. Ther is a BIG difference in 6 months of suffering and excrutiating eye and head pain and two years of it untreated!
But now I feel like I am dealing with the anger toward these doctors who played God with my life and health, and I am ready to try to move past the anger and find some kind of good for others out of this injustice!
So I will stay here, and maybe I can prevent this from happening to someone else! Another thing that this time has allowed me to do is to come to terms with a possible MS dx. At first I was so afraid of finding out that I had MS, but now if this does turn out to be MS, I have had the time to try to adjust to getting this dx.
I think it is harder being stuck between dx's than knowing for sure, and the road to the correct dx sure can be a long and hard one, but like the saying goes, " What doesn't kill you will only make you stronger!
Hugs,
~Santana~
Hi, I am glad you are posting and working through things. I wish I could answer your last post about how to let things go. It is a special trust that we place in our doctors, afterall we often see them when we are most vulnerable. There IS something wrong with the picture.
I saw my first (and most evil) neuro at the beginning of my 2nd attack, and he told me I was fine. It was right before a national conference for my work. I pushed myself hard, despite what my body was telling me, because of what he, my "care" provider was telling me. I am still very angry with him for that (and more) and wonder if the 5+ moths of HELL I am just leaving could have been avoided if he wasn't such a (FILL IN THE BLANK.)
You seem very aware and in tune with your feelings, so I think you will be ok. Share them with us so they don't break your back. We may never be able to resolve all of the mess these jerks put us through, and I am not sure I will ever feel the same about going to see ANY type of doctor again. It really ticks me off that gender, age, and lifestyle can all lead to quick judgements that we read about here.
There may not be easy asnwers or solutions, but we'll all work on it. And we know Quix (who is in all of our thoughts these days, hang in there, Mama Bear!) has an MD, so they can't ALL be bad, right!??!
Take care.
I saw my first (and most evil) neuro at the beginning of my 2nd attack, and he told me I was fine. It was right before a national conference for my work. I pushed myself hard, despite what my body was telling me, because of what he, my "care" provider was telling me. I am still very angry with him for that (and more) and wonder if the 5+ moths of HELL I am just leaving could have been avoided if he wasn't such a (FILL IN THE BLANK.)
You seem very aware and in tune with your feelings, so I think you will be ok. Share them with us so they don't break your back. We may never be able to resolve all of the mess these jerks put us through, and I am not sure I will ever feel the same about going to see ANY type of doctor again. It really ticks me off that gender, age, and lifestyle can all lead to quick judgements that we read about here.
There may not be easy asnwers or solutions, but we'll all work on it. And we know Quix (who is in all of our thoughts these days, hang in there, Mama Bear!) has an MD, so they can't ALL be bad, right!??!
Take care.
To all of my dear friends here who have helped me through the past two years, without you guys I would have fell apart dealing with all of these doctors,LOL!!!! And to all of the new members that I haven't met yet, goodness, so many new ones now! Thank you all for your kind words, they mean so much.
I think I just got tired of thinking about being stuck between ADEM or MS or whatever it is that happened to me two years ago. My step son going through this was hard because it brought it all back to life again.
I was so happy for him that he got treatment with IV steriods. But I felt angry with the doctors who did not believe me and didn't give me any treatment at all. When I saw the prompt and acurate care that they gave to him at the hospital, I knew right away that the doctors in the ER that treated me were so neglegent!
Not only did they totally not believe that I had suffered from sudden vision loss, they didn't do an MRI, they didn't call in a neurologist or even send me for a referal out patient. Instead, they had me carted off, handcuffed in a police car and taken to a phsyciatric hospital.
I am having a hard time forgetting that! Truthfully, I am more angry than I have ever been in my entire life about anything! What kind of idiot thinks that sudden vision loss is a phsyciatric illness. I was a bit confused, but not severly and I am assuming it was from the 10 brain lesions that had just hit me!
I know it is two years later, and I know I am now receiving good care from a Neurologist and many other specialist, but I am still mad, and I really didn't realize how mad until I saw with my own eyes exactly what the protacol for treatment is for a patient coming into the ER with sudden onset of neurological disfunction!
How do I get rid of this anger? I need help with this! Everyone keeps saying to go talk to a councelor, but I don't want to talk to one because, frankly, I know that they don't care about me, and I am fed up with doctors period. I guess you might say I have a trust issue now!
Is this Post traumatic stress that I am having? If so, will it ever be over? I want my life back, but I am so thankful that I even have a life to live. I am not trying to complain! These feelings are real and I have to let them go before they eat me alive!
All I can keep thinking is I might have been better in six weeks if they would have only believed me and gave me the treatment that I so desperately needed! But instead it has taken two and a half years of my life to recover this far!
Is it just me or is there something wrong with this picture? I thought I had let go of the anger I felt from not being believed, but when I saw how doctors are suposed to react to that kind of situation, I realized that I had been done so wrong, and this made me Mad.
Maybe I need to get mad, hit something, get it out somehow, but how!
~Santana~
I think I just got tired of thinking about being stuck between ADEM or MS or whatever it is that happened to me two years ago. My step son going through this was hard because it brought it all back to life again.
I was so happy for him that he got treatment with IV steriods. But I felt angry with the doctors who did not believe me and didn't give me any treatment at all. When I saw the prompt and acurate care that they gave to him at the hospital, I knew right away that the doctors in the ER that treated me were so neglegent!
Not only did they totally not believe that I had suffered from sudden vision loss, they didn't do an MRI, they didn't call in a neurologist or even send me for a referal out patient. Instead, they had me carted off, handcuffed in a police car and taken to a phsyciatric hospital.
I am having a hard time forgetting that! Truthfully, I am more angry than I have ever been in my entire life about anything! What kind of idiot thinks that sudden vision loss is a phsyciatric illness. I was a bit confused, but not severly and I am assuming it was from the 10 brain lesions that had just hit me!
I know it is two years later, and I know I am now receiving good care from a Neurologist and many other specialist, but I am still mad, and I really didn't realize how mad until I saw with my own eyes exactly what the protacol for treatment is for a patient coming into the ER with sudden onset of neurological disfunction!
How do I get rid of this anger? I need help with this! Everyone keeps saying to go talk to a councelor, but I don't want to talk to one because, frankly, I know that they don't care about me, and I am fed up with doctors period. I guess you might say I have a trust issue now!
Is this Post traumatic stress that I am having? If so, will it ever be over? I want my life back, but I am so thankful that I even have a life to live. I am not trying to complain! These feelings are real and I have to let them go before they eat me alive!
All I can keep thinking is I might have been better in six weeks if they would have only believed me and gave me the treatment that I so desperately needed! But instead it has taken two and a half years of my life to recover this far!
Is it just me or is there something wrong with this picture? I thought I had let go of the anger I felt from not being believed, but when I saw how doctors are suposed to react to that kind of situation, I realized that I had been done so wrong, and this made me Mad.
Maybe I need to get mad, hit something, get it out somehow, but how!
~Santana~
Hi there, I'm not sure if we've met here yet or not ... either way I know exactly what you mean about needing that break. But there is something that draws us back - the old misery loves company theory perhaps? No, I don't think that's it either.
I believe its because these people here genuinely care about each and every one of us. Its good to take a break, but its equally good to know you can always come here and be greeted so warmly.
Be well,
Laura
I believe its because these people here genuinely care about each and every one of us. Its good to take a break, but its equally good to know you can always come here and be greeted so warmly.
Be well,
Laura
We have all needed that break from time to time Santana. It's good to see you back again. But as much as we need the break, we also need to come back.lol
Hugs
Moki
Hugs
Moki
Hi Santana! We all need mental health holidays once in awhile! Hope you are feeling okay. Glad to "see" you!
(((HUGS)))
Wanna :o)
(((HUGS)))
Wanna :o)
Welcome back my dear...I am having a mental breakdown here I think and can read but can't seem to come up with the right thing to say...maybe I need to get away for a few days too??? We'll see...glad to see you back and doing well though my dear!
Lots of Hugs,
Rena
Lots of Hugs,
Rena
Missed you too! The train sure doesn't stop for us!
Hope you continue to feel a hair better these days.
Welcome back home (((hugs)))
Shell
Hope you continue to feel a hair better these days.
Welcome back home (((hugs)))
Shell
Hey Sweetie, its good to get a mental break now and then, you have been going through a lot lately. But it is great to come home!!! Take care of yourself Santana. I have those days where I just read and my brain can't think of what to say!!! Brain mush.....
Glad your back!!!
Love Ya,
Ada
Glad your back!!!
Love Ya,
Ada
You take care of yourself sweetie. Take as much time as you need but don't stay away to long. I hope you start getting some answers soon. It's so frustrating sometimes.
Miss you
Miss you
I wondered where you went, well we all need some time to reflex and work on things in our lives, outside of our family here...hehehe
glad your back and hope you have some luck getting answers in Sept...I'm waiting to see my Neuro re: my last MRI ... his office should call me next week to book an appt. I'll be calling them by thurs next week, if I don' t hear from them...I'll give them a couple of days, he is just coming back from a months vacation..
talk to you later...stay in touch
andi
glad your back and hope you have some luck getting answers in Sept...I'm waiting to see my Neuro re: my last MRI ... his office should call me next week to book an appt. I'll be calling them by thurs next week, if I don' t hear from them...I'll give them a couple of days, he is just coming back from a months vacation..
talk to you later...stay in touch
andi
Hi there, missed you, happy to see you back. Hope things go well for you on the 11th and 18th.
((hugs)))
~Sunnytoday~
((hugs)))
~Sunnytoday~
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