The A.S.S. effects

Anyone who suffers from auto immune disease knows what a huge bonus it is to be able to decorate for the Holidays. To have the pain controlled, and an energy surplus (Spoons!), is such a joy. I did this 2 weeks after my initial treatment. The A.S.S. effects were behind me, thankfully!

In my last post, I promised that my next post would be about the A.S.S. effects of my loading dose of steriods to treat my LEMS disease. I thought I would get to it sooner than now; but one of those great side effects was to not be able to concentrate very well.  My library books and the novel I am into now laid unopened; and the blog sat in cyber space with just two posts.  Well, fortunately, or unfortunately for you, I can concentrate again!

When my neurologist, Dr. Roople Unia, told me what the on-boarding dose and maintenance dose would be, I groaned and yet I had no idea what I was in for. When you hear of steroid treatments you think of weight gain, "moon face", and an unending appetite. When I heard "intensive infusion therapy with mega steroid doses" it honestly scared me. However, losing the feeling in my legs and face, as well as occasionally having difficulty swallowing, I knew I had no choice....Just like when I had my back surgery when I was 13 years old. 

So now comes the A.S.S. effects....

A: Annoying side effects: 

These were some I had expected, and many I had not. My face, neck and upper body became swollen, my body became flushed, and man did I pee enough to fill a swimming pool Sweaty me rolled out of bed once every hour to pee an unending stream. What I didn't expect was to sleep a ton that week...Where was the insomnia? I also didn't get the outrageous appetite. My stomach literally felt like I had lead in it. I ate the most DURING the infusion, to mask the horrible metallic taste that took over my mouth about 5 minutes into the hour long infusion. My second day in I brought a variety of different strong tasting candies and gum to try to find one that would get rid of the taste.  What was the winner?  The peppermint patties. I went to WalMart and bought myself a half a dozen bags once I realized that was what would work! 

After day one of the treatment.

S: Scary side effects.....

The very first day was the scariest. I went through my infusion, and when I came home it was dinner time. I made my go-to dinner of rotisserie chicken from Shaws and some cooked carrots. When I sat down to eat I was about a half a dozen bites in when all of a sudden the "difficulty swallowing" happened again, to the extreme. Now, the best way to describe this issue is that it doesn't feel like I'm choking, at all. What happens is when I swallow, sometimes the food will stop moving. It's happened enough that I know if I stay calm it will start moving again. (I did not know that this was a symptom of LEMS until I was diagnosed and looked  info up). When my prior neuro suggested going to an Ears, nose, throat specialist about this years ago, the last thing I wanted was another doctor and I could tell there was nothing BLOCKING the food from moving, it just simply stopped for a few seconds. On the first meal after the first infusion, my food literally stopped halfway down my esophagus for over 30 seconds. Scary as hell; but thankfully it had happened to a smaller extent before and I knew that it would continue moving, which it did. I took much smaller bites after, and chased the rest of my meal with a ton of water and have learned to always cut my meat super small and always have water handy in case it happens again.

Just like the difficulty swallowing symptom becoming much worse, so did the numbness that I had been experiencing. It started up again that first night and with a vengeance. My legs, and my face...and not simply the right side like my initial symptoms; but the left side as well. The way I describe the numbness when it takes over my legs is not only does it feel like I'm just coming out of a Novocain shot from some dental work (except on my legs) but I also start feeling like butterlies or bugs (I prefer butterflies) are hitting my leg in different places. My face, however, is the scariest. That night, and each  night thereafter during the treatment it continued to get worse, it felt like I had a numbing octopus over my face. Not every part of my face were numb; but many different areas were, and it "moved around." Things had gotten pretty bad last spring and summer, which is why Dr. Unia didn't give up on finding the cause; but after the treatments, it was amplified a million times. For some reason that I am quite thankful for, the worst of the numb symptoms happen after I've gone to bed, once I lay down. I'm not sure why that is, nor is my doctor; but I'm grateful it's not like that, or that severe, 24/7. These symptoms are why I knew I had no choice in the matter when it came to treating my LEMS. I simply do not want it to get worse; and if it does eventually get worse, I want to slow down the timeline of when that will happen. Scary, yes, simply scary; but I was grateful that my head wasn't in a toilet throwing up. It could always be worse.

The weekend after the loading dose was the miserable...My throat was insanely sore, my vision was "better" so none of my glasses were the right script, I felt like I had a load of lead in my stomach and my asthma flared. It was sucky. Yep, that's the best word to describe. However, friends and neighbors came through and helped me immensely. A delivered smoothy from Tim Hortons, fresh soup, popsicle and cat food for George. I was not prepared for what the end of the treatment would feel like, at all.

This is what 5 days in a row of 1000 mg steroid infusions looks like at the end.

                                                          

S. Super side effects....

I knew why I needed the treatment; but I did not expect that so many other things in my body were being affected by LEMS. With steroids your senses do become amplified; but in my case, not only was my sense of touch affected by the disease; but all of my other senses were too. My hearing has been an issue that couldn't be figured out; and when these numbness episodes first started I was working at Verizon Wireless. At the same time my vision was getting progressively worse. My eye doctor and I attributed the worsening eyes to being on a computer all of the time. Well, it appears we were wrong as my vision has improved since the treatment and the glasses that work best for me are my 3-4 year old scripts! My hearing has improved and the strangest thing for me is that I can feel my stomach gurgling for the first time in I can't recall how long. The flip side of this is that I have stomach pain for the first time in years as well. In my full body CT scan they found one kidney stone and multiple gallstones. My first response was "well, they haven't been causing any pain!"...Not any pain I could feel as it turns out. What is kind of scary about this is the fact that I have dealt with pain from my back, fibro, and my psoriatic arthritis for a long time now..How bad is that pain really? 

One Super Side effect that I did not anticipate was that my muscles throughout my body that had been in constant contraction mode (neck, shoulders, back and it turns out more), relaxed for the first time in decades. Multiple massage therapists, physical therapists, and doctors have not been able to figure out why my muscles wouldn't relax no matter what type of typical treatment I was given. Often times my muscles would get WORSE with typical treatment. There were so many knots, described by multiple providers as "rocks" in my neck, shoulders and back that simply would not release. Well, release they did! I was sucking on a popsicle, in the dark, trying to alleviate the insanely sore throat that the treatment had caused. My clock projects the time to the wall and as I turned to look at what time it was (3 am to be exact), I turned only my neck and not my entire upper body. Hallelujah! I could not believe what I had just done! The next day turning my head side to side became a new hobby of mine. Driving is so much easier being able to turn my neck!  Not only did my back, neck and shoulder muscles release; but so did my rib muscles....My ribs have always been "odd" due to my scoliosis turning my ribs to the side; but lately they just seemed to stick out a lot more. After the treatment my ribs actually relaxed! I could breath fully and taking deep breaths was refreshing as it should be. I've added deep breathing to my daily relaxation semi-yoga stretching routine. My clothes fit differently even. Now, with all of these muscles finally being able to relax after decades, I had quite a few days of very sore muscles; but I didn't care....I was so relieved. Thanks to my neighbor, who is a trainer, and a friend's recommendation, I was able to stretch my way though the pain and add some Gatorade to replenish my electrolytes to feel better sooner.  6 days after my treatment was complete I literally felt like a new woman. I hopped in the car for my first spontaneous road trip to Portland in years and attended a show at the Portland State Co with another pet rescue friend of mine. THIS is what I had been missing in life and I am so happy to be able to live again.

6 days after my loading dose was complete. I felt better than I had in decades.

At a play at the Portland Stage Co with fellow pet rescue advocate, Linda.

So, does this treatment cure LEMS? Unfortunately not. I met with my neuro last Friday and we discussed the treatment and prognosis. For the treatments, there is no set protocol, simply because LEMS is SO rare.  My doctor and I will have to figure out what works best, giving me some good days like my spontaneous road trip to Portland while managing through the treatment side effects and bad days. We are starting at once a month; but they may need to be more. This past weekend the numbness started again (2 weeks since my treatment stopped). I am keeping a detailed calendar of treatments, side effects, and when the symptoms come back so that we can tweak the treatments for the best results with the least amount of detriment to the rest of my body. My next treatment is November 3rd, after seeing my rheumatologist again. With the numbness returning my guess is we may end up at every 3rd week; but my future treatments are 1/5 of what my loading dose was (1 infusion of 1000 mg of steriods vs. 5 days of infusions of 1000 mg each), so we just don't know. Also, LEMS is so rare, there is no prognosis. There also is no cure. The goal will simply to be to keep the symptoms at a minimum and to hopefully stop the continuation of the difficulty swallowing. Occasionally this disease affects the autonomic nervous system. If that happens, it becomes fatal. I'm simply not going there. 

So what now?  We continue to treat LEMS, we continue to treat my psoriatic arthritis as well. I'll be now experiencing a bad week or two of side effects from meds for a happy couple of weeks of living as a normal 40 something will be worth it. The challenge is that I'm unfortunately not a normal 40 something. With all of my treatments my immune system is severely compromised (in an effort to get it to stop attacking my body), so that has me in a position that I need to be very careful to what I expose myself to. Crowds during cold and flu season? Nope. Little kids that are sick? Nope. Friends who are sick? Nope. With fall and winter upon us it severely limits what I'll be doing socially. Yes, I could wear a mask but I HATE drawing attention to myself. I have started wearing gloves when I run to the grocery store (at opening before the crowds get there) to limit contact with germs on carts, etc. I'm a very social person so this is going to be challenging, very challenging. However, I've got these two goobers, Rocky and Taco, and my cat George, to bring smiles and laughter to my days that I have to avoid social gatherings.

 We'll take lots of walks and they will supervise the household projects that I am finally ready to start tackling. I'm finding happiness in the simplest things; and, due to not being able to run the roads, I'm actually doing what I've always dreamed of doing, writing.  Thank you so much for reading until the end. Your support is appreciated more than you'll ever know. 

My hero, Dr. Roople Unia, who finally got to the bottom of what has been confounding my doctors for decades.