The saga of getting my prescription Multiple sclerosis medicine, as I shared in earlier posts, was finalized as of last Thursday. I was simply overjoyed when the UPS man came bounding up the porch steps with my package in hand. By that point my walking was terrible and many of my old symptoms come roaring back. Now I wish that I could report instantaneous relief and normalcy after taking the first pill but I cannot. After lots of rest and sheer dogged determination I am certainly getting around better but the other things are lingering.
It is amazing what you get used too. A person can deal with much and manage just fine. It is when one new thing is added or an old thing changes that creates the proverbial straw that broke the camel’s back.
I have had issues with paraesthesia, a kind of pins and needles, numbness, and maddening crawling sensations on my back for years. It will increase in intensity sometimes due to stress, weather changes, fatigue and Lord knows what else. As long as I take care not to absentmindedly claw my skin raw I can usually deal with it.
Then there is the MS Hug. It is definitely not a sweet as it’s name leads people to believe. Anyone who has experienced this can attest to that. For me it is as if a 800 lb gorilla is embracing me around my lower ribs & abdomen area. While the gorilla is not crushing me he is also not letting me take in decent sized breaths and thus I’d feel as though I could faint.
Numbness was one of my first symptoms of multiple sclerosis. All over my body are areas of varying degrees of numbness. I cannot feel anything in the majority of both of my feet, areas of the left side of my body and nearly all of my left hand and half of my right. I once absentmindedly moved a casserole dish without potholders, forgetting it had just recently come from a 400 degree oven. I didn’t feel the pain that I should have when I realized my mistake and suffered burns. Then there are the number of things I have dropped, crushed and broke(once a wine glass) in my hands. Greater caution and the number of burns, messes and lacerations over the years have been minimized.
Lhermitte’s Sign is a strange one. When I tip my head forward, chin towards chest a momentary electric shock sensation shoots down my back and to my finger tips. It doesn’t last long, simply a momentary zap.
The straw that’s trying to break the camel’s back…
The thing that I cannot completely deal with is an uptick in the level of spacticity and pain in my left thigh muscles. The pain as of late has been horrible, a stabbing burn deep into my quads. Bad enough it brings tears to my eyes when I allow myself moments of solitary weakness. I take a variety of things supposed to aid this but for some reason they are not doing their job as well.
The other thing is tonic spasms. Tonic spasms involve the extensor muscles (quadriceps-front of the upper leg & the adductors-inner thigh muscles) is an involuntary straightening of my leg. It is so bothersome and there is no way to keep it from kicking out. I try to mentally restrain it to no avail. The best way to describe it is like holding your breath too long, to the point your body is screaming for a breath until it suddenly gasps, only in this case it suddenly and painfully kicks straight. These spasms interfere with sleep, walking and climbing stairs.
I understood that I was going to have detrimental things happen during the 3+ weeks while I waited for the insurance company to do what they were supposed to do. I also know this is just the right now and may not be my forever. If it ends up being a ‘forever’ symptom I will just have to deal with it. I take solace in the fact that I have learned to adapt to so much already and my rate of success on that has been 100%.
creative •MS• mom 