For those of you who have been following my story I thought I would give an update...
I have been sorta diagnosed.
Doc says he still thinks the lesions on my brain were caused by a one-time infection. I have lesions on my brain, none in my spine and my spinal fluid was negative for O-Bands. He said I will have these symptoms the rest of my life, but that he doesn't think it's progressive so he is calling it 'Benign MS'.
Here is what my 6 Month Comparison MRI said:
"Approximately 10 punctate FLAIR hyperintensities in the cerebral white matter compatible with the clinical diagnosis of multiple sclerosis. Comparison is difficult because of the small size of the lesions. Possibly two new lesions since the previous examination, but a few lesions visible on prior exam are not seen on the current exam. No enhancing lesions."
The way the Doc explained the number count being different is that they are so small they are hard to count, and sometimes you get different 'slices' with the MRI.
My cognitive testing was 'normal' for the most part. After a 30 minute interview, and a T/F test (MMPI) the Psychologist (Psychiatrist?) who is now apparently an 'expert' on my 'personality' deemed me to be perfectionistic which leads to anxiety.
...at least that's the way I understood what my Neuro said about it.
I guess I'll have to wait until I get the hard copy of the results to completely understand the importance of that profoundness, but right now, I can only surmise that it had some impact on whether some of my symptoms are valid or not.
The Neuro said that the rest of the cognitive testing (memory, etc.) was good, and not consistent with someone who has MS. (Why am I still having problems?)
So...he set me free. I will only see him again if I have some glaring symptom (I guess, like an arm falling off or something, Shashi
)
I am actually okay with this...kinda. It makes me feel less like I am in limbo (which I hate). I don't want to keep having to pay $1,000 deductible (plus the 20 % that the insurance doesn't cover) for an MRI.
I've also been thinking about it, and I don't really want to go on DMD's either, given the article I read recently about DMD's not stopping progression of the disease, and also I don't really want to go on expensive meds that will make me feel worse than I already do.
My Neuro is smart, and thorough. I think he did a good job of ruling everything else out, and was meticulous about making sure he didn't misdiagnose me. He listened to me and treated me with respect. I have confidence in him and I trust him.
If my arm or leg falls off in the future, well HEY...it's just progression. if I had known it was going to be progressive, I wouldn't have done anything differently than I am doing now (i.e. no meds, better diet, exercise).
I'm excited about working with my diet and supplements. (I have cut out grains, legumes, sugar and dairy...similar to Dr. Wahl's diet) and I have started pushing myself to walk for exercise. Even when I am so fatigued I don't think I can do it, I'm finding that I ALWAYS feel better on the days that I make myself.
So...that's it in a nutshell.
I'll still be hanging around from time to time. Y'all are awesome here!
I have been sorta diagnosed.
Doc says he still thinks the lesions on my brain were caused by a one-time infection. I have lesions on my brain, none in my spine and my spinal fluid was negative for O-Bands. He said I will have these symptoms the rest of my life, but that he doesn't think it's progressive so he is calling it 'Benign MS'.
Here is what my 6 Month Comparison MRI said:
"Approximately 10 punctate FLAIR hyperintensities in the cerebral white matter compatible with the clinical diagnosis of multiple sclerosis. Comparison is difficult because of the small size of the lesions. Possibly two new lesions since the previous examination, but a few lesions visible on prior exam are not seen on the current exam. No enhancing lesions."
The way the Doc explained the number count being different is that they are so small they are hard to count, and sometimes you get different 'slices' with the MRI.
My cognitive testing was 'normal' for the most part. After a 30 minute interview, and a T/F test (MMPI) the Psychologist (Psychiatrist?) who is now apparently an 'expert' on my 'personality' deemed me to be perfectionistic which leads to anxiety.
...at least that's the way I understood what my Neuro said about it.
I guess I'll have to wait until I get the hard copy of the results to completely understand the importance of that profoundness, but right now, I can only surmise that it had some impact on whether some of my symptoms are valid or not.
The Neuro said that the rest of the cognitive testing (memory, etc.) was good, and not consistent with someone who has MS. (Why am I still having problems?)
So...he set me free. I will only see him again if I have some glaring symptom (I guess, like an arm falling off or something, Shashi
)I am actually okay with this...kinda. It makes me feel less like I am in limbo (which I hate). I don't want to keep having to pay $1,000 deductible (plus the 20 % that the insurance doesn't cover) for an MRI.
I've also been thinking about it, and I don't really want to go on DMD's either, given the article I read recently about DMD's not stopping progression of the disease, and also I don't really want to go on expensive meds that will make me feel worse than I already do.
My Neuro is smart, and thorough. I think he did a good job of ruling everything else out, and was meticulous about making sure he didn't misdiagnose me. He listened to me and treated me with respect. I have confidence in him and I trust him.
If my arm or leg falls off in the future, well HEY...it's just progression. if I had known it was going to be progressive, I wouldn't have done anything differently than I am doing now (i.e. no meds, better diet, exercise).
I'm excited about working with my diet and supplements. (I have cut out grains, legumes, sugar and dairy...similar to Dr. Wahl's diet) and I have started pushing myself to walk for exercise. Even when I am so fatigued I don't think I can do it, I'm finding that I ALWAYS feel better on the days that I make myself.
So...that's it in a nutshell.
I'll still be hanging around from time to time. Y'all are awesome here!
I wasn't trying to rub it in anyone's face.
I guess I'm feeling optimistic. Now tomorrow...someone may have to peel me off the floor. Tomorrow...I might have to reach UP to scrape the bottom of the barrel. I'm going to enjoy today for today.
Comment