Thursday, March 29, 2012

Assessing the next steps

If nothing else, my first blog about this journey has sparked conversation and varying points of view concerning when a doctor should discuss disease.
I really do appreciate the support and it is a benefit to writing about this experience.  However, my motivation for writing this blog is to provide me with a therapeutic outlet.  Whatever I can get out of my head and onto this virtual page seems to alleviate the stress that it may have caused if I were silent.

I had a follow-up visit with my doctor yesterday to discuss the full picture and what the next steps in finding possible answers would be.  I should give some further clarification, my appointment ten days ago was with a retired doctor who was filling in for my doctor.  It is funny because I have heard several theories on how this doctor should have handled the discussion with me.  While I appreciated his candor and straight forward nature, many people in my life wished he had not been so definitive.  There is so much variance in both the types of doctors there are and the types of patients.   
So yesterday the appointment was with my doctor who had returned from a conference.  He was left with the notes from the other doctor and now it was up to him to decide what steps would be next.
My own doctor is much more speculative and less committal when answering my questions.  An example:
Me: Were the symptoms I experienced last year (joint pain, fatigue, tingling sensation in my hands and feet) neurological and could they be symptoms of MS?
Doctor: Possibly.
**side note** My doctor is great, I really like him.  BUT for the majority of my questions this was how he answered.
Granted, I was only asking these questions because I was told by another doctor that he thought I did have MS. Regardless, ten days ago I presented with optic neuritis, that is conclusive.  Whether it was a direct doctor or a reserved one, there is still a good chance that we would have been discussing MS.  At no time did my doctor say that he did not think that I had MS.

Conversely, an MS protocol MRI is the next step whether I had a doctor saying "20 years ago we would be diagnosing you with MS, but now with MRIs we can find out definitively" or a doctor that just said "the next step here is an MS protocol MRI and there is a 50/50 chance you have MS," I am still in the same place.  I am living with the possibility of having MS until I have a definitive diagnosis and it is our human nature to wonder and worry.
My doctor yesterday said that if he could give me one piece of advice he would advise me not to do the "what if" thing.  Fair enough, and to be honest, we really haven't.  The only thing that changed (it is still a pretty big thing) in the past 11 days is that I have felt like maybe we will get closer to finding some answers concerning my health.
So you may be asking yourself, "if it is only a 50/50 chance, what else could it be?"  Good Question!  I asked that too.  We have ruled out Lupus, Rheumatoid Arthritis and Lyme's Disease through blood tests.  It could be psychiatric and according to my doctor that is the second most common diagnosis with the symptoms I am presenting.  More specifically it could be anxiety.  He was quick to point out that it does not make my symptoms any less real, it just means that there is no neurological damage attributed to the symptoms. Is it wrong to be hoping for anxiety?
So the MS protocol MRI (which spins the molecules a different way and looks for different algorithms) should give us a definitive "yes, I have MS" or "no, I do not have MS."  There is a small possibility of maybe (of course there is!).
The reality is we won't know anything more until the next MRI but my doctor was hopeful that the MRI and the results would be at most a two month process.  Here is hoping.

2 comments:

  1. Hey honey... I am sorry you are going through all this. I really hope it turns about to be something of nothing rather than what you're fearing.

    I think writing it all down is the best idea - as you say, getting it out of your head is very therapeutic but also using this as a record of symptoms and feelings and experiences might prove invaluable as you move through the journey.

    xx

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