Hi, all...well, I feel calmer now, after seeing my new Neuro, Dr. R! He is an older gentleman, and I was told he is 'the best in the business', so that gives me some bit of confidence, that he knows what he is talking about.
First...thanks to Lisa (Cyclist), for telling me to be organized...he couldn't believe that I had written out a short, two-page (lots of white space) outline of my history (head injury in 2002), including the two 'episodes' that I have documented.
He was really impressed when he asked if I had any of the MRI 'images' with me...and I took out an envelope from my notebook, and handed them six CDs, with my previous MRIs on them...lol! He said, 'you have given us a lot of work to do'!
Anyway...in a nutshell, after doing the Neuro exam (he ended the exam abruptly when I was swaying all over the place, trying to do the 'heel-to-toe' exercise!)...he believes I have a 'late onset demyelinating disease'...probably 'brought on by the trauma from your head injury'.
So...since I am heading back to SD soon, he said if things get more acute for me, then I could go for an LP, there in SD...or, if I can wait until we get back to NM (not sure of the date yet), then he would prefer to establish a new baseline there, by getting both an LP, and a new MRI. That makes the most sense to me...so I am going to try and wait until we get back to NM.
He said that he didn't recommend drugs for me right now, primarily because of the serious side affects. I kind of inferred that he thought, because of my age of 54, almost 55, that many times, the dmds really don't seem to help much, for whatever reason. Also...he indicated that many times, with late onset, there is usually not much inflammation, and 'flares' don't show up on the MRIs. I have not had any 'rings' showing yet.
I am fine with all that he has said...basically just monitoring it all. My symptoms, while very problematic at times, mainly seem to be 'faux' flares, and brought on by my activities, or the weather. It seems like everything is a constant, low-level, of symptoms, currently.
Well...we shall see. I just feel that I am in very good hands now, and 'all is good'. Thanks for listening, all. I am a little more focused on 'late onset', now...lol! Love and Light, all. Thanks for being here for me...it truly helps to 'be heard', and not judged. Jan.
First...thanks to Lisa (Cyclist), for telling me to be organized...he couldn't believe that I had written out a short, two-page (lots of white space) outline of my history (head injury in 2002), including the two 'episodes' that I have documented.
He was really impressed when he asked if I had any of the MRI 'images' with me...and I took out an envelope from my notebook, and handed them six CDs, with my previous MRIs on them...lol! He said, 'you have given us a lot of work to do'!
Anyway...in a nutshell, after doing the Neuro exam (he ended the exam abruptly when I was swaying all over the place, trying to do the 'heel-to-toe' exercise!)...he believes I have a 'late onset demyelinating disease'...probably 'brought on by the trauma from your head injury'.
So...since I am heading back to SD soon, he said if things get more acute for me, then I could go for an LP, there in SD...or, if I can wait until we get back to NM (not sure of the date yet), then he would prefer to establish a new baseline there, by getting both an LP, and a new MRI. That makes the most sense to me...so I am going to try and wait until we get back to NM.
He said that he didn't recommend drugs for me right now, primarily because of the serious side affects. I kind of inferred that he thought, because of my age of 54, almost 55, that many times, the dmds really don't seem to help much, for whatever reason. Also...he indicated that many times, with late onset, there is usually not much inflammation, and 'flares' don't show up on the MRIs. I have not had any 'rings' showing yet.
I am fine with all that he has said...basically just monitoring it all. My symptoms, while very problematic at times, mainly seem to be 'faux' flares, and brought on by my activities, or the weather. It seems like everything is a constant, low-level, of symptoms, currently.
Well...we shall see. I just feel that I am in very good hands now, and 'all is good'. Thanks for listening, all. I am a little more focused on 'late onset', now...lol! Love and Light, all. Thanks for being here for me...it truly helps to 'be heard', and not judged. Jan.
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