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 

Summertime Woes & Worries

This month marks 4 years since I was diagnosed with MS and in October it'll will have be 7 years since my first clinical isolated syndrome, but was misdiagnosed as pinched nerves and carpal tunnel. Over the past 4 years so much as changed, my life has taken a new path. When I was newly diagnosed I got caught up in all the negative emotions that come with any disease. That wasn't never a good place to be because it wasn't helping anything and probably made some things worse. 

One of the biggest issues I have is dealing with the summer heat. Since I was little I always loved summer because it's a more relaxed time and beach vacations are always on the top of the list! Some of my favorite childhood memories are from different activities we did during the summer. But, the year I was diagnosed with MS I never knew it would completely change my favorite time of the year. 

People with multiple sclerosis have problems when it comes to heat. When I get overheated that's when I have an MS flair up, but in order for it to be considered a true relapse the symptoms must last over 24 hours. The last few summers haven't been really bad, usually it consisted of numbness in my hands, arms, legs, or feet. For many summers the main time I'd have numbness was when we traveled, because it's hard to keep the car at a temperature where I can stay cool. 

I'm not sure why, but this summer as been really hard on me with the heat. Plus, the heat intolerance episodes this summer have been more serious than having a numb hand or foot. Since my last relapse that decided to come for Christmas, my right arm has continually given me problems. The initial relapse paralyzed my right arm (it seemed stuck to my right side), I was only able to move my hand. As time went on I was able to move my arm from my hand to my elbow, it eventually took 12 sessions of occupational therapy and over two months to totally regain the strength in my arm. 

Unfortunately more and more I wake up unable to use my right arm or have limited usage. This has to be one of the worst parts of MS, going through heat intolerance is always nerve wrecking. This morning was one of those days I woke up to find my arm was very weak and then I couldn't stop coughing. Right now I have to be hopeful that this is heat related and that tonight or tomorrow morning I'll be able to use my arm like usual. As I try to stay positive and convince myself that it'll get better in the back of my mind I always wonder if this time will last longer. 

Through my relapses and other issues with symptoms of MS, I've learned about myself and it has changed my life. I'm not saying that MS made me a different person, but I have learned to live for the here and now. Today, I woke up frustrated because of my arm so I knew it had to be a low key day. Days when I feel great I've learned to seize the moment and take advantage of those days, probably too much. 

While I usually don't think of MS as a "gift" I will say it's changed me; I don't stress over the small things that don't mean anything and I spend my time wisely. Since I have good days and bad days, I try to do whatever I can. I have become so involved with the MS Society volunteering at different events, I serve on the MS Walk committee, and this year I became a MS advocate. Due to my amazing parents and crappy immune system I'm able to continue my education while spending my "free" time doing whatever I can for the National MS Society. 

If you had told me 4 years ago what I'd be doing today I wouldn't believe it! At first I wanted nothing to do with MS, it was something I only told people on a need to know bases. I have grown a lot since them and now I tell anyone and everyone about MS. My family even helps hosts a golf tournament to support the National MS Society and this year will be our 4th annual tournament.