TMI Information Overload

I had my MRI on December 23 and last Tuesday I had my follow up appointment with my neurologist.  I have a big ol’ new lesion on the front right side of my brain.  Which is probably my own fault.  For parts of November and December I did not take my Copaxone as prescribed, so all hope is not lost.  My neurologist wants me to strictly adhere to the Copaxone and also have a week of steroids (ick) and then another MRI in March to determine if my no adherence is the problem or if I am genuinely not responding to the Copaxone.  So we won’t have a definite picture until March, so stay tuned for updates on the disease progression.

I have been feeling so overwhelmed with information lately regarding nutrition, MS, exercise and alternative therapies.  Which has made my brain sort of shut down, it needs to process the information from my neurologist appointment and all of the information I have read before it can entertain anymore info.  That being said, I have oodles of people in my corner and that send me links to MS related information.  One of those articles really got me thinking and questioning things.  I keep reading the same thoughts over and over again.  Dietary changes improved my health, exercise improved my health, no dairy improved my health and/or no gluten improved my health which are all great and easy ways for you to fight the disease and make you feel like you are doing something about it.  With my recent visit to the neurologist and my information overloaded brain I think I have gotten a little cynical.  I cannot find any information on these reports of people doing all these things that they also have clear MRIs.  MRI is really definitive in telling you whether your therapies are working or not.  I even posted the question on a recent article I read, I do not have an answer yet.  If you feel great that is half the battle, but you cannot go around telling people how xyz therapy worked for you if you don’t have the MRI to back it up.  That is really frustrating for me.  My last three MRIs last year show with disease activity, even though I am in better shape than I have ever been and also eat better than I ever had.  For crying out loud I ran a 10k and a 4miler back to back one weekend (both PR races) and a 5miler and 2 5ks all in the same week.  And I am not cranking out 15 minute miles over here, I am doing just as good as “healthy” people are.  Yet my last 3 MRIs still show disease activity and what they call silent exacerbations.  On my neurological exams I do not present a single visible symptom and if my neurologist did not know my history he would diagnose me as healthy.  Without that MRI one cannot really say that their therapies are working.  Exercise, nutrition and even some alternative therapies are important in your fight and you’ve got to fight with all you’ve got.  However, feeling great cannot be your only gauge of whether these things are working or not and I am a perfect example of it.  I feel like I am stirring up a whole pot of trouble by being so honest about my thoughts but I think its about time the rose colored glasses come off.  I do believe that how you feel and what you can do is far more important than what an MRI says but at the same time that MRI might be giving you a message of things to come and should not be ignored.

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2 thoughts on “TMI Information Overload

    • Thank you for your comment. I am just exhausted by the vitamins, pills, injections and dietary information out there, it is overwhelming and exhausting to try to process everything and make sense of it. I am going to start seeing a holistic nurse practitioner soon which hopefully will help me sort out all of this information.

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