Hey, hi, hello!
Thanks for taking the time to read this.
First of all, I want to say that I am fully aware that this post is coming from a place of anxiety. I know I am asking you for a sort of reassurance that you can't really give, and I know the reason I'm asking is a product of anxiety. However, that doesn't seem to be stopping me.
Second of all, I know that you can't provide me with a diagnosis or rule out a diagnosis. I think I am just venting/throwing stuff out there into the void for the sake of DOING something. I know there's nothing I can really get out of this but support, but I appreciate it nonetheless.
This is my story as it stands.
I had an event in 2012 that lead to a short hospitalization. No one was sure what it was initially, but I did end up with a neurologist from that incident (note: I don't think I need to give specific details of what happened, it would just bog down my already over-wordiness). It took a bit, but he gave a diagnosis and started a treatment. Over the next two years, I saw him every six months. Sometimes I was doing well, other times I was not, and adjustments were made to treatments and tests were done. The diagnosis changed/was added to at various points.
We're military, so in 2014 we moved and I went to a new neurologist. There is only one in my area. I wasn't doing well at the time, and I was skeptical of having only one doctor option, but he and I worked well together. I told him, as I always have - this is my diagnosis from my last doctor. This is how I feel. I am not in any way attached to the diagnosis he gave. I don't believe it or disbelieve it. I just want to feel better and I don't care what I have is called or if it's called anything. I'd prefer to treat whatever it is instead of just treating symptoms, but whatever it takes to make me feel better is fine by me.
He was skeptical of my diagnosis from the previous neurologist, and did his own tests. He did end up feeling that diagnosis was confirmed, and we have worked with various medications to varying levels of success. Sometimes I feel good for a long time - I even got a job out of the home for the first time in years because I just felt so great for such a long stretch, and I really wanted to be out and about and doing stuff. Eventually, I didn't feel great again and I had to leave the job to manage a balanced life. Whatever. I miss it, but it is what it is.
This is my issue: we have continually treated one condition that my neuro believes I have, due to his testing, which he repeats regularly. However, new symptoms have cropped up over time and he seems to ignore them. They don't fit with my diagnosis, but don't negate it, either. Are they part of a whole package of a different diagnosis, or are they a totally separate additional diagnosis? I don't know, I'm not a doctor. I don't really care, either - like I said, I just want to feel good and I don't care how that happens. (Nothing deadly is of concern)
So how does this fit in with MS? If I listed out all the symptoms, it would be obvious, I guess. Yes, my collection of symptoms matches well with POSSIBLE MS. However, they match with all kinds of other things, too. You know how it is. There's no point in listing out what's going on, because all you could say is, "Sure, could be. Could just as easily not be." I try to limit my internet research so as not play home doctor, but I know that much.
Like I said above, we're military and we're moving again. I'll need to find a new neurologist, and this time I'm determined to be more of an advocate for myself. I could use some advice on what to look for in a neuro, or how to even go about researching a good neuro. I have all my medical records ready, but I'd also like to know what kind of personal documentation I should take - I have some rough timelines going years back when I didn't think anything big was going on, and some more detailed information over the last year, but would like to know what I should bring with me to an initial appointment, and any tips on making sure everything that's going on is considered, not just the big one or two symptoms.
The cycle of feeling great and happy and healthy followed by a horrible "relapse" or what have you has brought on intense anxiety. The kind where you know what's causing it and that it's not real, but it still feels so awful anyway. I know that the unreasonable, irrational anxiety is what has brought me here now. For some reason, while I have always been open to whatever doctors tell me, I have absolutely decided that MS is a diagnosis I do not want. For a dumb reason - my mom's dad had MS, and the idea of having to tell her I have it too is terrifying me beyond reason. I KNOW that is irrational - it's not more likely than anything else that I have it or don't. This is absolutely a product of anxiety (which I did see someone for, don't worry). This whole post is a product of anxiety. None of this has any basis in rational thought (the diagnosis is possible, that's not irrational - my attaching onto THIS PARTICULAR DIAGNOSIS as terrifying is the irrational thing, if that makes sense).
So finally, I get to my questions: I had an MRI of my brain during the initial incident in 2012. It was clear. I've also had 7 lumbar punctures. The fluid was only tested once, in 2014. It was also clear. When I find and meet a new neuro, hearing my symptoms alone, I understand he might want to repeat those tests. However, are clear tests from that many years ago enough to say, "MS is almost definitely not it?" I know you can't tell me that medically. I guess I'm just asking for personal experience, which I promise I will not use to diagnose myself, but more to self-talk myself into calmness while I go through the whole new doctor routine again. Can I point to those tests and say, "listen, I know what these symptoms sound like, but these tests said it's not, so let's look at something else?"
I know I might not be making much sense, and I know I'm talking myself in a circle here. I know I'm asking you to say, "it's not likely you have MS" when there's no way you can actually say that. But I also know you're people who have dealt with chronic illness for a long time, as I have, so you're probably familiar with the loops and leaps your brain takes when you feel bad and just can't seem to feel better. I realize offering me reassurance means nothing and you could end up wrong, but I'd appreciate it nonetheless. On top of that, any helpful tips and directions to point me for choosing and meeting with a new neuro with the intent of just FEELING GOOD AGAIN would be helpful.
Thank you, and I'm sorry for the length and rambling craziness. It's just been a long time since I've felt healthy and I want to get there again.
Thanks for taking the time to read this.
First of all, I want to say that I am fully aware that this post is coming from a place of anxiety. I know I am asking you for a sort of reassurance that you can't really give, and I know the reason I'm asking is a product of anxiety. However, that doesn't seem to be stopping me.
Second of all, I know that you can't provide me with a diagnosis or rule out a diagnosis. I think I am just venting/throwing stuff out there into the void for the sake of DOING something. I know there's nothing I can really get out of this but support, but I appreciate it nonetheless.
This is my story as it stands.
I had an event in 2012 that lead to a short hospitalization. No one was sure what it was initially, but I did end up with a neurologist from that incident (note: I don't think I need to give specific details of what happened, it would just bog down my already over-wordiness). It took a bit, but he gave a diagnosis and started a treatment. Over the next two years, I saw him every six months. Sometimes I was doing well, other times I was not, and adjustments were made to treatments and tests were done. The diagnosis changed/was added to at various points.
We're military, so in 2014 we moved and I went to a new neurologist. There is only one in my area. I wasn't doing well at the time, and I was skeptical of having only one doctor option, but he and I worked well together. I told him, as I always have - this is my diagnosis from my last doctor. This is how I feel. I am not in any way attached to the diagnosis he gave. I don't believe it or disbelieve it. I just want to feel better and I don't care what I have is called or if it's called anything. I'd prefer to treat whatever it is instead of just treating symptoms, but whatever it takes to make me feel better is fine by me.
He was skeptical of my diagnosis from the previous neurologist, and did his own tests. He did end up feeling that diagnosis was confirmed, and we have worked with various medications to varying levels of success. Sometimes I feel good for a long time - I even got a job out of the home for the first time in years because I just felt so great for such a long stretch, and I really wanted to be out and about and doing stuff. Eventually, I didn't feel great again and I had to leave the job to manage a balanced life. Whatever. I miss it, but it is what it is.
This is my issue: we have continually treated one condition that my neuro believes I have, due to his testing, which he repeats regularly. However, new symptoms have cropped up over time and he seems to ignore them. They don't fit with my diagnosis, but don't negate it, either. Are they part of a whole package of a different diagnosis, or are they a totally separate additional diagnosis? I don't know, I'm not a doctor. I don't really care, either - like I said, I just want to feel good and I don't care how that happens. (Nothing deadly is of concern)
So how does this fit in with MS? If I listed out all the symptoms, it would be obvious, I guess. Yes, my collection of symptoms matches well with POSSIBLE MS. However, they match with all kinds of other things, too. You know how it is. There's no point in listing out what's going on, because all you could say is, "Sure, could be. Could just as easily not be." I try to limit my internet research so as not play home doctor, but I know that much.
Like I said above, we're military and we're moving again. I'll need to find a new neurologist, and this time I'm determined to be more of an advocate for myself. I could use some advice on what to look for in a neuro, or how to even go about researching a good neuro. I have all my medical records ready, but I'd also like to know what kind of personal documentation I should take - I have some rough timelines going years back when I didn't think anything big was going on, and some more detailed information over the last year, but would like to know what I should bring with me to an initial appointment, and any tips on making sure everything that's going on is considered, not just the big one or two symptoms.
The cycle of feeling great and happy and healthy followed by a horrible "relapse" or what have you has brought on intense anxiety. The kind where you know what's causing it and that it's not real, but it still feels so awful anyway. I know that the unreasonable, irrational anxiety is what has brought me here now. For some reason, while I have always been open to whatever doctors tell me, I have absolutely decided that MS is a diagnosis I do not want. For a dumb reason - my mom's dad had MS, and the idea of having to tell her I have it too is terrifying me beyond reason. I KNOW that is irrational - it's not more likely than anything else that I have it or don't. This is absolutely a product of anxiety (which I did see someone for, don't worry). This whole post is a product of anxiety. None of this has any basis in rational thought (the diagnosis is possible, that's not irrational - my attaching onto THIS PARTICULAR DIAGNOSIS as terrifying is the irrational thing, if that makes sense).
So finally, I get to my questions: I had an MRI of my brain during the initial incident in 2012. It was clear. I've also had 7 lumbar punctures. The fluid was only tested once, in 2014. It was also clear. When I find and meet a new neuro, hearing my symptoms alone, I understand he might want to repeat those tests. However, are clear tests from that many years ago enough to say, "MS is almost definitely not it?" I know you can't tell me that medically. I guess I'm just asking for personal experience, which I promise I will not use to diagnose myself, but more to self-talk myself into calmness while I go through the whole new doctor routine again. Can I point to those tests and say, "listen, I know what these symptoms sound like, but these tests said it's not, so let's look at something else?"
I know I might not be making much sense, and I know I'm talking myself in a circle here. I know I'm asking you to say, "it's not likely you have MS" when there's no way you can actually say that. But I also know you're people who have dealt with chronic illness for a long time, as I have, so you're probably familiar with the loops and leaps your brain takes when you feel bad and just can't seem to feel better. I realize offering me reassurance means nothing and you could end up wrong, but I'd appreciate it nonetheless. On top of that, any helpful tips and directions to point me for choosing and meeting with a new neuro with the intent of just FEELING GOOD AGAIN would be helpful.
Thank you, and I'm sorry for the length and rambling craziness. It's just been a long time since I've felt healthy and I want to get there again.
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