Wednesday, July 16, 2014

Life with MS

I mentioned in my last post about my bum arm, well my doctor fit me in yesterday to see me and there were more questions by the time we left her office. Here's the situation: my right upper arm is weak and for whatever reason I cannot control it like I should be able to. This happened in December,  but I was unable to move my right arm at all! This time I can move from my elbow to my wrist and to make matters worse I'm having sharp pains going down my arm from my shoulder/neck. The pain medicine I'm on for my back pain should help with this pain too, but it's not so that's scary!

During my appointment Tuesday with my neurologist she watched me walk, looked at my eyes, checked my reflexes, and a few other fun things they do during a neurology exam. Then, she said this wasn't "textbook" MS and she's wondering if it's related to my MS at all. Since it's such a specific place and nothing else has been affected it could be a pinched nerve, an infection, or nerve damage. If it were due to MS it would probably affect a larger area because the brain and spinal cord control all the nerves in the body so when there's a lesion it affects several areas because the nerves are bundled.

I go for an MRI Friday afternoon of just my neck to see if I have an active lesion. If it is MS she said it would have to be a nerve in the spinal cord. I do have lesions in my c-spine (the neck), so from my research I could have more lesions in the spinal cord. Either way, it doesn't really change how they are going to handle the situation because there's not much they can do. The main treatment IF it is MS would be steroids, but I did the 3 day steroid treatment in late December and would rather not take that route if I don't have to.

All I can say is welcome to my life, I'm the one who is the difficult patient. I'm the patient that is in the small percentages. Turns out (I learned after the fact) that 3% of patients who get the spinal cord stimulator trials have bleeding once it's removed, yes 3% so I fall in that category! My doctor told me later that I was only his 2nd patient to have this problem and he does trials all the time. I always say I'm only lucky when it comes to bad things. Can I win the lottery or be in 3% who score big at the casino.... of course not! But, this is my life so it could be MS or it could be something else with my arm, only time will tell.

I'm not sure what lesson I'm supposed to be learning BUT since I've been diagnosed with MS I've become more patient, learned that God listens to our prayers, and that I pray most when things are bad and I need that little ray of hope. I always get a sign, my little ray of hope at the right time, but it doesn't mean it's easy. I've learned a lot about myself since getting sick and I've learned to be careful when I pray, this journey is definitely an obstacle course and I'm not in control. So for now I will just try to go with the flow and do the best I can with what I'm given.

But, no matter what happens at the end of the day I have the cutest little boy who absolutely loves me and gives the sweetest kisses! He hates wearing clothes, but this morning he let me put this super cute shirt on him that I just ordered from Ralph Lauren. Yes it's pink, BUT it's for the MS walk he needs something pink/green to show his support!


Snuggles Alexander Summers 

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