Oh boy, what a week! Hang on to your hats, this will be a long one!
For about 10 days now I have had shortness of breath and tightness in my chest. Now when you call your doctor and use the term "shortness of breath" they immediately think you are having a heart attack or your lungs are collapsing or something. The nurse at Shepherd advised me to have my lungs and heart checked by my PCP right away. So I went and saw my Dad, who said my heart and lungs sounded fine. We did a peak flow test which measured a little better after nebulizing, but nothing to really get concerned about. Meanwhile the breathing isn't getting any better and feeling like you can't catch your breath is pretty darn miserable.
So we are off to Shepherd on Friday morning where we ask Dr.T about the breathing thing and he nods That Nod that I have come to recognize all too well. It says: "Yes, I know exactly what you are talking about. No, you are not imagining it. Yes, this is just another wacky MS symptom and No, I do not have a definitive cure for it." Dr. T is all too familiar with my complaint...he calls it the "MS Hug". I quickly respond, "That is a Horrible name for something so unpleasant and I refuse to call it that! I have named it the Boa Constrictor instead, thank you very much." He laughs at my joke, then goes on to explain that my brain signals are being misinterpreted and sent to my intercostal muscles (the tiny muscles in between each of your ribs) and telling them to SPASM...For no reason other than to irritate me. Oh, this disease is trying my patience!!!
So we have 2 options: a muscle relaxer like Baclofen or Zanaflex OR a drug called 4AP. Each come with pros and cons. Baclofen, for example will relax ALL my muscles and also make me drowsy and loopy. The 4AP...well now, this is a doozy. The funny name stands for 4-aminopyridine, and it is a drug that helps to improve the function of nerve signals across damaged or demylinated nerve fibers. It is currently used in over 10,000 MS patients as well as spinal cord injury patients and has had great success. The catch: it is not FDA-approved yet, therefore not covered by insurance. Costs look to be $60-70 per month, so it isnt astronomical. Oh! and the best part... it is used "agriculturally" as bird poison!!! NO I am not even kidding! They use it in NYC to control the pigeon population because it is considered a "humane" form of bird poison!
I joked with my stepdad and my other friend who are both on Coumadin (which was originally developed as rat poison) that together we could control the entire rodent population.
So I don't know...I am sending pleas to my brain to just stop this nonsense and let me breath easily again so I don't have to be forced to try bird poison. Maybe it will listen...if not, maybe I will try some of these things and see what happens. I went and saw my friend Rachel yesterday who is a massage therapist and one by one, she tried to relax each intercostal muscle by massaging the crap out of them. 24 hours later it seems to have helped. I try to be Superwoman with all this, but you reach a point where you are just miserable, your quality of life suffers and you are willing to try anything. I am not there yet, but I have my moments :-)
Now onto the really GOOD NEWS!!! Dr. T said he was "very pleased" with my MRI results. There were no signs of any active lesions (YAY!) and the 3 lesions in my left lateral whatever were so small you could barely see them...which means they Shrank! And are possibly healing!!! YIPPEE! Not all MS lesions heal and no one knows why some do and some don't but I am SO lucky that mine are shrinking! He said Betaseron (my injections) were definitely working, since there were no new/active lesions and he said I don't need to have another MRI for a year! He is that happy with how my brain looks! I feel like I just won the lottery or an Oscar or something...
I would like to take this opportunity to thank the Academy, the wonderful people at Betaseron (shout out to Judy!), everyone at Shepherd Spinal Center (Dr. T, Tracy and Emily you are all Rock Stars). I could not have done this without my dear family and friends and all of You out there cheering me and my brain on to victory! Thank you!!!
Ok back to reality. Dr. T did say there was one thing to note on my MRI. He did find some "mild demyelination" in my brain stem; however the damage did not look new, because new/active lesions show up differently when they inject me with this stuff during the MRI. Meaning: this brain stem damage was probably there before, but my April MRI was not as detailed. What is even MORE interesting is that Dr. T explains that brain stem lesions are Notorious for causing double vision, among other things.
Ah Ha! We have a culprit!!! Dr. T does NOT think I have this Myasthenia thing. He says my complaints with my vision make perfect sense if there is damage to the brain stem, i.e. worse when I am tired or overheated, because signals don't travel as well over nerve fibers when you are fatigued or hot! It all makes sense!!! SO, what now? Well, we wait to see if the brain stem will REmyelinate or not. Again, some do, some don't. I keep doing my injections and send happy healing thoughts to my brain. But, BOY, was I relieved that he doesn't think I have a Second disease to contend with! Who has time for such things?!?!
All in all, a very good appt with wonderful news. I don't expect the road to be bump-free or anything, but it is looking smoother all the time.