Childhood symptoms?
 

Just curious to know if anyone had any warnings signs long before there were "symptoms". I was a highly active child growing up, thought nothing of walking five miles or more even at age four or five. Well correction, I thought nothing of hopping, skipping, running, jogging and dancing along for the distance of five miles or more, I rarely 'walked' anywhere.

But then most kids in my home town were like that, I grew up in a city, walking was often quicker than driving and trying to find a parking spot. But still at age six I had to start physical therapy for shin splints, and has been a life long practice ever since. The doctors didn't do much investigation into the cause. Kid plus running without stretching properly equal shin splints, take her off the track team (only I wasn't on a track team)

I might have complained about other issues I was having afterwards, but PT seemed like a punishment to me for being bad and crying over pain when I wasn't gushing blood or running a fever. I was/am extremely ticklish and the tickled sensation overrides the reaction to pain. Basically I laugh hysterically rather than sob so. So when I tried to tell the therapist it hurt, because I was laughing so hard he didn't really listen, eventually got annoyed and ordered me to stop playing around.

When he found out I was still running around at home he said it couldn't be that bad, I wouldn't run if it hurt and would stop when the pain set in. (Oh how little the man knew me:D) The biggest reason why I ran around non-stop was because I couldn't take the pain of laying down, like nap time and bed time if I wasn't exhausted. Earliest memories of painful nap times was just before turning three, I would literally scream, cry and beg not to be put to bed if I wasn't tired. Which naturally is a parents first sign that their child is over tired 99% of the time. But for me it was the fear of the torturous two hours ahead of me trapped in a bed with my muscles wigging out and no way to distract myself from the pain.

I was also highly clumsy as a child, I wasn't allowed drink out of glass until I was fourteen, because I always dropped them, knocked them over and sent them flying. Not just glasses either, but pens, pencils, books, toys, forks, knives.... Pretty much anything I held in either hand had the potential to become a projectile, and anything within an arms reach was in the danger zone. But it wasn't noticeable muscle jerks and was just chalked up to me being the kid like a bull in a china shop. I was a klutz, no help for it.

And maybe that's what it was, maybe not... Because for a klutz I was well-balanced, after PT I went on to play sports, the legs still hurt like a mother but wasn't going to say a thing less I get tortured again. So I played baseball, took dance classes, gymnastics, swimming, figure skating, horseback riding, skiing and so forth, just enough to fall exhausted into bed each night. But during those sports, where clumsiness is a major issue, I was fine. More likely to fall prey to injury off the ice rather than on it, more likely to sprain an ankle walking to the locker room after gymnastics then flipping around the pony.

And I did fall a lot as a child, and not tripping, passing out or getting pushed. But rather walking along and 'oh hello there ground, how are you today?' Walking was my most dangerous sport as a child. Even as an adult, I still remember walking home from my mother's one day and simply doing a superb superman fall. No reason, was upright, on even ground took a step and 'oh! Hello there ground, we meet again' I skinned up both my hands, banged up my knees, finding out after I made it home that I had ground tar and gravel in to them and was pouring blood into my shoes. But still couldn't tell you how or why it happened.

I mean I was spoiled as a child, and had my fair share of health issues, but altogether was considered a healthy, albeit clumsy and accident prone, child. It was a happy childhood, aside from the tortuous pain that I eventually got used to and found my own way to deal with. But I still can't help but wonder how things might have turned out if I had better articulation when I was three, before I was even four my folks gave up on naps with me, coming to realize I'd sleep when I was tired and not a minute before, so by the time the articulation of my issue with naps could develop more fully, I only had to make sure I was exhausted by bedtime, which even that they gave up the ghost on about a month after giving up on nap times.

And our doctor at the time was the old fashion sort, kids will get what kids need, if they ask for carrots, give them carrots, if they want to stay awake a bit longer, let them... Hands off sort of approach. The same school of parenting my folks were from, so long as we didn't do a prolonged "I want carrots! I only want carrots! Breakfast, lunch, dinner, nothing but carrots!" They went along with it also so long as it was never "chocolate chip cookies!"

I never thought much about it until I was in college with someone who was diagnosed with MS. She and I both had very similar childhoods in respect to terrified of nap times, though her parents never gave up the ghost and rather berated her for 'telling stories' there wasn't anything wrong with her, go to bed! And was fifteen going on sixteen before she was trusted with glassware.

At least I know now that my mother and father both did listen when I was doing the PT laughing though saying it hurt. They both did go and talk to the therapist and he was the one who assured them I was fine. My mother was skeptical but knew the muscles did need stretching as I was in negative degrees of upward flexion, so it was a necessary evil and nothing else appeared to be wrong.

But does any of this sound like anyone else's experience? Could this have more warning signs than what is currently accepted? Or does it just strike down like lightning one day? This is the hardest thing to suss out when doctors ask, when did the symptoms start? Which symptoms? When would they be considered a symptom? What is even a symptom? And how many of things I take for granted as 'normal' after a lifetime of experiencing them are you going to say is a symptom? Heck I went ten years with a constant, but low-grade headache before thinking to ask my doctor about it, it was 'normal' mildly annoying at times, but for the most part just always there. It didn't do anything or effect me in anything I wanted to do, just there thumping away.

Sorry for the long post, but I've been curious for a while about it. And while my first regular doctor after I became an adult was awesome for listening patiently to everything, very much the "tell me your life story" kind of doctor, and was the one who first suggested MS of course he also suggest a few other neurological disorders, when I was twenty-three, and did the superman fall.

But the doctors now, seem to just focus on one or two symptoms, they don't want the whole history, just yes, no, muscle weakness? Spasms? For how long? (Life) okay but when did they start? (Birth i guess) Well why are you here now? (Got worse) Okay but how long ago? (Since birth I guess) Any other symptoms? (Like what?)

Is generally how my appointments end after they cut me off when I try to explain. Eventually they'll throw something out like ... Headaches? (Yes, since turning thirteen, with monthly to bi-monthly exasperations and following a car accident it's been weekly to daily migraines) I don't see anything in your record until after the accident where did you get treated? (At home, in bed, suffered through them most of the time, it's a headache it's not going to kill me unless I knock myself off) And this started when you were thirteen? (Yes) hmmm, anything else more recent? (Inner voice: more recent when, give me an age at least! I can recount everything from age two to now and any year in between but do you want only the new or the same old as well? Outside voice is inevitably a disgusted sigh and just a list of what is currently going on with me in that moment.)

I have tried to make sx lists, they tell me it's too long and half of it isn't going to apply, then they'll generally ask if I had a symptom that they discounted last time, and now want to know why I didn't mention it. :smileypray: God grant me the patience not to commit homicide. So this is where the curiosity comes in, what, where, when and why, is something a symptom or 'normal'?

Wow Starz, that's a lot, but yes, in looking back, there were many signs
of this dreaded upcoming disease for me, beginning at about 6, I think.
Nothing major, just little things. My DM also remembered happenings
that didn't seem right and worried her, but like you, Drs just sluffed
them off.:rolleyes:

Even if the suspected something like MS, way back then, what could they
have done, but use me as a little squirmy ginnea piggy? Life then, would
have been horrible. As it was, I had a pretty healthy happy childhood.:)

Knowledge is not always empowering.:eek:

Starznight,

The majority of us with MS can take symptoms back farther than our diagnosis date.

As for myself; I have had symptoms of MS since I was a kid. I had difficulty riding a bike, keeping up with friends, walking into others (unable to walk a straight line), poor balance, heat intolerance and sensory symptoms.

Best wishes on your diagnostic journey.

True, I wouldn't want to have been a guinea pig as a child, and even now there isn't a cure. I guess the curiosity stems more from hoping to unlock the disease. When exactly is it "contracted?" For a long time it was thought to be purely inherited but didn't exhibit a classic inheritance model, for instant in identical twins if one had it the other wasn't likely to get it. Now they're speculating viral exposure, and combining gene traits to viral exposure.

It's a little understood disorder, but maybe if we can at least start untangling the mangled mess to its beginning, there might be more answers. Unfortunately we need doctors and some patients too, to not just explore the here and now, but to trace it back to the first signs. Look at children today exhibiting the same little signs and check them down the road to see if they follow the MSers, or other disorders or are they just your average everyday healthy adult?

And I realize there are more brilliant minds than my own working on this everyday, some dedicating a lifetime to the research of this disease. I really do appreciate them, but this is a disorder that appears truly 'Disordered' without any real 'accepted' warning, no standard progression or even definitive test.

Frustrating though it is, at the same time it's absolutely fascinating. I might be more inclined to fall into despair if not for the tangled mess I find myself in. The ultimate puzzle, that keeps my mind racing looking for pieces. And likely will continue to race until that portion of the brain gets demyelination going:D

Well it's a distraction from pain at least, and thanks Sally for another possible piece.

In my case I was in my 30s before anyone noticed anything unusual and in my 40s before I was diagnosed. I had mononucleosis as a teenager but I don't know if that has any relevance or not. :confused:

Your story sounds like mine, but my incoordination was almost completely eye-hand and did not affect my lower limbs. With this being the case I was terrible at sports except for dancing and running, and in the latter I excelled! I never could put a puck, a ball, or a bat anywhere near where it was supposed to go, but I was otherwise so healthy that teachers and parents and doctors wrote it off. I was, of course, accused of having mental problems--particularly not wanting to socialize--when I could not play baseball no matter how hard I tried in the fifth grade. But I did so well at dancing in various public venues that everyone thought I was impervious! I got a D in Archery and a D in bowling in the mandatory college courses, and nasty looks from the teachers.
My parents, I realized later, were scared of what lurked, the dread MS gene which was supposed to be ruining the life of my father's sister, who had been a math teacher at Lincoln High in Portland Oregon, and an organist at the church founded by her father and his brothers. My mother said that Lucile fell down in "every doorway of Meir and Frank" department store. My mother said this with horror.
In college I got sick, but the problem was not so much balance then as other symptoms, tachycardia, abdominal pain, radical constipation. I wasn't taking a sport other than dancing, so it didn't show up so much, but the Health Service could think of nothing except psychological causes. Decades later I was dx'd with Porphyria another neuro disease which could explain the college difficulty, but first I was dx'd by more than one doctor with MS, including Dr. Swank, the author who used his special blood test on me as well as accepting another doctor's more usual diagnostic tests. I learned later that some people at Swank's institution (OHSU) think that some people who have Porphyria or MS may actually have both things, but diagnosis is so difficult in any case that it would require the type of medical care of, say, the President of the United States, or the Kennedy Family, to get a clear dx of which was what. In other words, as you hinted yourself, diagnosis is difficult. I have come to accept both diagnoses as valid. After dx with Porphyria I was able to avoid triggers and did better, but my neurological impairment from "whatever" is still with me. I have done very well, perhaps because I have sought alternative treatments such as Dr. Swank's. But my youth was clouded by the unknown disease, which was a threat or a killer of family relationships--prior to marriage to my great second husband.
Now I have the numbness in the feet, and must be very careful not to trip, so I now have your lower extremity difficulty too. So life is led very carefully.