Monday, April 13, 2009

To go or not to go...

I have re-written this a few times now as I always feel whiny when I talk about my health, but the truth is- I am just plain conflicted.

Next month I have a long awaited appointment with a Multiple Sclerosis specialist in Seattle, WA. I could beg off or reschedule as the trip will be costly. I must fly to Seattle, taxi to Virginia Mason possibly stay in a hotel, etc.

The trip will also be costly emotionally. Every test, every specialist I hope that perhaps this will be when I get the answers. This is when I finally get the diagnosis so I can deal with it and start some sort of treatment. Not knowing is hard, but not knowing for almost two years is just ridiculous.

Almost two years ago, my left hand went numb. Not tingly slept on my hand wrong numb, but " no really I cant feel my fingers numb." I saw my regular pain doctor (long story- another time) and she suggested that we get a MRI as I probably had a blocked nerve. Many valium and a few hours later I got a call from my good doctor asking me to go back for a MRI of my brain ASAP. I had my second MRI that night at midnight. Needless to say, I read my own paperwork requesting a brain scan to diagnose for M.S. or tumours. Almost two years later, we are still vacillating between the two extremes.

I started daily Copaxone shots on the diagnosis of most likely. I stopped them on the basis of probably not. I was encouraged to start weekly intra-muscular shots of Avonex on the basis of most likely again. I decided not to start any regime until I had a more firm diagnosis. That and the answer to my question of "what will it hurt?" Answer being "we will take regular tests to check your liver."-

I think I am most frightened to hear and answer of without a doubt you have Multiple Sclerosis. I know it is so wrong to prefer the idea of cancer, but I honestly do. M.S. is such a hopeless diagnosis. Nothing can be done, treatment is subjective and invasive. There is no definite outcome and the disease process varies from person to person. I could lose my locomotion or perhaps my mind. Strangely enough most of my M.S. like symptoms resolved after I stopped using the Copaxone shots.

I no longer log symptoms or record day to day doings as suggested by the makers of the immunotherapy drugs, but what ever this disease is, it affects me daily. I have almost two years logged into waiting, trying to accept not knowing. I do not know which frightens me more. More years of not knowing or finally getting the answer I just do not want.

So, will I go- probably. Will I enjoy the trip- probably not. Will I keep an open mind? We will just have to wait and see.


Tara R. said...

I have no personal knowledge of MS, but we do have a friend who was diagnosed several years ago. Since then he has married, fathered two children, and is living life to the fullest. He has bad days, but he's not letting it take over his life.

Good luck.

Heather Dugan ("Footsteps") said...

Not knowing creates its own sort of burden. Worry is such a huge drain on the best aspects of ourselves.
Once you get your answer -whatever it might be- you'll be able to focus your energy and not be swirled about by the "what if"s. ~So sorry you are facing such a difficult journey.

jojo said...

I do think not knowing is the worst part of all of this. I believe I will be able to deal with the news, whatever it may be, when I get it. This time in "limbo" as it's called is probably the hardest part.

I do believe it's all in how you look at things. I believe I can continue to live a full life once I have some ideas as to what I am dealing with.