Post Edited (Kiera) : 3/24/2008 5:59:42 AM (GMT-6)
Here is my list of what I call "residual symptoms" that I experience daily. These are not "new", but have been with me for years. Some of them "get worse" sometimes...intensify...but that's not an "exacerbation", it's still "residual symptoms":
Spasticity of limbs, particularly my legs. "Big toe" constantly curves up (on both feet); ankles twist, knees flex "back", making standing impossible. Spasticity in calves sometimes is more pronounced, sometimes less so. Spasticity in thighs is moderate. Spasticity in groin is constant, and annoying. :) Spasticity around my torso is pretty mild right now (sometimes called the "MS hug") but worsens when I get over-tired, or in summer if I get over-heated.
Numbness and tingling from mid-torso to toes. This also worsens when I'm fatigued, or too hot.
Weakness in my arms, particularly right arm and hand. I can only hold a pencil (or small tool ) briefly. I always have to watch to be sure I'm holding something (for example, if I pick up a cup of coffee, I have to be sure to watch that I keep holding it, or my hand will "let go" on it's own). This is challenging, as I'm right-handed. I tell people I can write long enough to sign checks and credit cards...a dangerous thing! :)
If I weren't taking oxybutanin twice a day, I'd not have bladder control. If I didn't use glycerin suppositories once every couple of days, I'd not have bowel control. Even with those things, bladder and bowel control is "questionable". I have had loss of both at times.
Esophageal spasms. I don't get these daily...but maybe a couple times a week. Note that this is a "residual symptom" -- just because it doesn't occur daily, doesn't make it a "new exacerbation". That distinction is true for all of these symptoms! Anyway .. the spasms mean that I'll start to burp/burp/burp and if I can't swallow water sufficiently to "bump open" the spasm, I'll vomit. (I make a great lunch companion!! :) )
Fatigue. Not "pass out or fall asleep" fatigue ...but more an overwhelming sense of "I need to lie down right now", can't deal with another activity, must leave the room and be by myself fatigue. Again, this doesn't happen daily, but is still a "residual" symptom.
"Remission" in the early stages of MS may in fact mean you'll go for some periods of time without any of these symptoms occuring. But not always. If you've had a major exacerbation which has damaged your nervous system sufficiently, you'll have these sorts of things to deal with always. That's not a new exacerbation. Like, every time I get constipated, that's not an exacerbation -- it's my mismanagement of my "bowel program". Every time I experience the "MS hug", that's not an exacerbation; it's that I've gotten overtired, or overheated, or am sick with something else, causing that symptom to worsen. Every time I have an esophageal spasm it's not an exacerbation; it's another example of spasticity affecting my body. And so on. Do you see the differences?
This was both validating and informative. I really never had "normal" health once I was diagnosed. I have always had residuals as well. My biggest and most annoying symptom is the constant and ever present vertigo. I have the sensation of movement on a constant basis. I have some minor balance issues. I also have bladder and bowel problems. I have some mild eye problems - I have trouble tracking left to right with reading, especially small print. I have leg spasticity especially in my left. Both of my feet are numb from about the mid shin down. I have some minor foot drop in my left foot. I have a patch of numbness on the left side of my torso.
Any or all of these will get worse if I am over tired, fighting a cold or other illness and even allergies. They will also get worse if I am not careful with my body temperature. I am for the most part, pretty tolerant of the heat but when I am finally overheated look out!!! lol.
My flares have been completely obvious. I have only had three. The first two were diagnostic and happened before I was officially diagnosed. The first one was crazy bad and landed me in the hospital for 4 days unable to walk due to severe vertigo. I could only walk with a wall, a walker or a big sturdy husband or other "man-cane." After four days in the hospital I was allowed to go home after begging off from rehab!!! The second flare also sent me to the hospital. The last one (last spring) knocked me off my feet with severe and deep numbness from the waist down. I was given 5 days of the lovely solumedrol. It took 3 months for my new symptoms to cool to a new baseline.
I feel extremely blessed to have the abilities I still have. I am hanging in there despite the dreaded disease.
Thanks for reading all this, I dont' know how helpfu this all was but thanks for letting me share/vent.
Love and prayers,