Goodbye 2022 and HELLO 2023...
Written 12/28/22
Happy New Year! Goodbye 2022 and HELLO 2023. I’m ready to start fresh, chase every opportunity and write a new chapter in my book of life.
I had hoped to finish the year off with this last blog, but I got caught up in the moment and tried my best to stay present in all of the holiday gatherings. So here we are...
In 2022 I felt like I pushed every button available even the red one that everyone says to not touch. The last few weeks in December I had been consumed with trying to control the spasm/spasticity combo that I have been experiencing since June 2022. Things still continue to stump all of us, but we are still trekking right along. We have a plan of action but first let me give you a little synopsis.
December 2022, I made my way to Bend for my 6-month appointment with my MS Specialist. Overall, it was a successful meeting but most of the topics that were discussed were not what I wanted to hear. After updating my doctor about the success of my last infusion in September 2022 we proceeded with the physical tests that we use to help guide us through this journey. It's like a blueprint of my physical capabilities that helps us create a plan of action. It continues to change every time we visit. If you were to look at the chart, I am sure it looks like a bunch of mountains.
We started with the timed walking test. My timed test wasn't as fast as I would have liked but I still remain in the average bracket for individuals with MS. Not even a second after finishing my walk my leg began to put on a show. The spasm/spasticity combo set in and instantly drew the attention of my doctor as she tried to study my lovely episode while I held tight to the wall making my way back to the room. I was asked to lie down on the table as my leg and body were being observed. Questions began to surface, and answers given yet still a quiet cricket chirp still seemed to occupy the room. I was told that the pattern of spasms/spasticity don't match what they normally see but I was experiencing some type of TONIC SPASM (painful muscle contraction lasting 30 seconds or more). Spasms can come from any lesion or damage to the spine. The best way to describe the tonic spasm is to imagine my leg having a seizure. It reminds me of a flopping fish that is on land trying to make its way back to the water. It occurs when laying down but when walking it causes some issues with movement. It can be painful if it proceeds to move as violent as the video below shows or if it became like a Charlie horse involving the entire leg up to the hip. Otherwise, I feel like I bought one of those exercising jiggling machines that were used back in the days.
Shortly after that a few more tests such as hand, arm and leg strength were measured which thankfully I am above average or at the average levels for those. We proceeded to talk about a few different things we can do to help combat the tonic spasms so I can return to full activities. I cannot work out without my leg locking up. Spasms and spasticity are very common with individuals with MS but learning how to combat them is different according to each individual. The positive note that my doctor had said was that there is still time for the new medication to help lessen the severity of it. I need to stop being so stubborn and accepting the pain levels. If we can get on top of the pain, then it will be easier to combat the spasm. Waiting until the pain scale is too high isn't helping the situation.
As of right now, we have changed a few vitamins and are combining physical therapy, magnesium and muscle relaxers in my lifestyle. For a week in December, we tried to incorporate muscle relaxers as a daily medication but unfortunately it just made my tonic spasms more aggressive to a point where I could not lift my foot off the ground while trying to walk. We are going to try another routine but adding the muscle relaxers 30 minutes before a workout to see if it will minimize the tonic spasm post or during a workout. I also put in a request for physical therapy which was cleared through the insurance, and I have my first appointment on January 3rd. I know that it’s going to be rough and probably a few tears, but I am willing to try an alternative way to keep my strength.
When my MS journey started 5 years ago there were many of the healthcare individuals that thought I was very progressive in my diagnosis. After starting a DMT and making healthier lifestyle changes things begun to get better which shocked many of those who took part in finding my diagnosis. Every time I go to a doctor, I always seem to bring curiosity to the medical office. My story and symptoms don't match the books that many of them studied for 6+years. It can be fun to know that you are not a part of a written book but sometimes it feels like taking the cliff notes would be an easier step. I am not giving up and we are trying everything that we can. I am staying connected with my doctor and keeping track of my symptoms and one of these days I will be able to uncoded my MS notes. For now, my handy dandy walking cane has been my travel partner and will continue to be until I can feel more stable on my feet.
I will continue to do my research and learn more about ways to support my body so I can enjoy things to the best of my ability. It may never seem like it is enough at times but taking the small victories has been helpful in being able to achieve bigger things. Always be your own advocate and make sure to communicate with your physician to hopefully gain a clear and successful approach to your lifestyle.
Let’s make this year GREAT! We got this!
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