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Tuesday, July 20, 2010

As a child, You or I might have had MS and not have even known it...

As a Child I or You, might have already had Multiple Sclerosis
Who is to say no and who might say yes?

Who else might right now be thinking back, many moons ago to when he or she was also a child...

How many might have been considered lazy or a day dreamer?

How many may have been slower than most of their friends? Especially known while playing a game called TAG, that you were easiest to catch, to be tagged and then yelled at : "YOU'RE IT" !  Were you "IT" more than others?

How many might have gone on road trips with their parents and often had a bladder issue that your parents only yelled at you about...? I am not stopping again, they would say...

Were you called clumsy or a klutz

Could you not score high on school testing, not because you didn't study, but because you just could not remember what you read? 

How about participating in Gym Class (P.E. or Phys ed)? Ever notice that Gymnastics just wasn't your thing, simply because you felt it better to keep both feet on the ground where you were better balanced! Less coordinated?

Not I, but were you ever last to be picked or amongst the last to be on a team because you were as "able" as others participating in that sport? 

Vertigo was an issue for me, even way back then... (surely no roller-coasters for me either)

Oh, let's not forget about Pain, headaches and more. I seemed to always have-had something hurting and then simply labeled: a Kvetch, or a hypochondriac.

As a child from what you may be able to recall, what else might there have been that caused you to be different, which now you just chalk-up to being your MS? 

So, let's read what others have to say...
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Anonymous said...

I believe I have had MS before I was a young teen. My mom told me that as a young child I would tell her I would tell her "my arms are broken". I did ok in school, not great. At times I felt like my head was swimming, it was hard to concentrate. Yes...I was always called last in gym. I was klutz. There were times when I had to take to my bed. It was generally in the hot months, allergies the doctors said. When my friends would go to the legs hurt as we walked the sand, I lagged behind. Who would have thought it was MS....a kvetch yes...MS? Who knew. I went for 14 years of doctors between the ages of 30 and 44 until I was dxed.

Anonymous said...

In 1960, age 12, the left side of my body quit working. Of course back then MS was very rare & there was nothing that could be done anyway.

Never completely recovered from that one. Docs just said "it's all in your head". After MRI in 1992 told mom it is all in my head & I have proof now. LOL!!!


Anonymous said...

My son was a late walker, but what was outstanding was, he could not take the heat of summer. He had what I call hot flashes, his face and ears would turn red as a beet, and once he colapsed on the grass. When he had a fever at age 1 and a 1/2, he had a convulsion. I have called national MS society many times and suggested that they do a survey of what the MS patient was like as a child. Even if the patient is 50 years old, there are certain things the mother remembers. She should take the survey. But I don't see any progress by them at all. Only more Drug Prescriptions from the nuerologist.

Anonymous said...

When I was 15 I woke up and could not move my legs. The doctor told my mom it was growing pains. In school I had a hard time with comprehension as well as years later and knew the answer but did not understand how I got it. I know my MS started after I had my son 23 years ago and only was diagnosed 10 years ago.

jendie's musings said...

I was a bright kid, started reading and writing before kindergarten, but I was less than coordinated. I started wearing a wrist watch at about age 7, but was always scratching the face of them, no matter how hard I tried to be careful. I'd bounce off of walls and into doorways. Not a balance thing, as I was pretty well balanced when horseback riding.

I had an amazing memory, I'd remember things after the first reading or hearing it during instruction at school.

Hindsight says that at about 10 I started showing signs of clinical depression. Lost interest in things I used to love and became more introverted.

I started having knee pains when I was about 11 that would come and go, for no reason. The doctor would always try to pass these things off as growing pains.

At about age 12 I started having problems with my vision and even started wearing reading glasses after a trip to the eye doctor, but that cleared up and went away, only to start up again a year or so later.

At 15 I started having muscle pains in my back. My mom would rub the knots out of the muscles, but they would come back. After a while and missed days of school because I just couldn't sleep, my mom took me to the doctor again. We were given the choice of going to see a chiropractor or an osteopath. It sort of helped, but kept coming back so at 16 the pediatrician had me get a bone scan. There was NOTHING wrong with me as far as what the results showed. I was told it was just stress.

At 18 I started having pains in my right wrist and tingling in my fingers and was told I must have carpal tunnel syndrome. By 20 I had an EMG, but was told that the nerve wasn't under any pressure and the release surgery would only have a 10% chance of helping me. This was in 1989.

Doctors didn't think kids could get MS back then and the things I was going through weren't severe and eventually went away.

I got married, had 2 children old symptoms would flare up, but then go away again. So I didn't do anything about it. At 27 (1996) I did start having bladder issues, like urgency and hesitation, but didn't really think about it. Family members would say that it was because I was nearing my 30s and had 2 children. But I started having weird vision problems, like seeing what seemed like those heat mirages, but only in my peripheral vision.

By then I was divorced and had no medical insurance for myself, but when I started noticing numb spots on my body I decided to go see a doctor. They ran tests to see what it could potentially be, but they all came up negative, so I got referred to a neurologist. In the 3 months while I was waiting to get in to see the neurologist I developed severe double vision. I was dxed with MS three days after the initial neuro appointment, when the brain MRI came back. I was 29.

Anonymous said...

Connie says: Wow...that could have been written about ME...totally described my childhood!

Anonymous said...

I definitely had my first clearly defined relapse at 14. Very painful legs. Also, I can't remember a time when I didn't have headaches -- always on one side of my head -- the same side where I now experience TM. The medical profession is now beginning to recognise childhood MS. Although this is a good thing, I'm very pleased that I didn't know I had MS until my early 30's. There's a lot to be said for blissfull ignorance!

Mansour said...

I do not know if it is related to MS. I had bed-wetting for 15 years and when i got to 15 my bed-wetting automatically finished, as far as i used many medicines, waking up many times in the early morning, being embarrassed many times, in dictation i used to write different when i was hearing, and many other things when i was kid!

Anonymous said...


I just want to say thank you for providing this wealth of information in your newsletters.

The fear of knowing something is wrong in your body with no answers. Then, the relief of having a diagnosis but the fear of the unknown for the future has been an experience that I would not wish for anyone.

The article in the latest edition discussing the possibility of MS at very young ages was like reading a book about me. I remember the torture that some of my elementary teachers put me through. I wasn’t a bad student but I had difficulty focusing. As far back as I can remember I have had leg pain. My Mother finally carried me to my doctor who looked at me, looked at my legs and said it’s just growing pain. Those growing pains have plagued me all of my life.

Looking back my first exacerbation was at 16 and was diagnosed with Mono. I have been diagnosed with Mono 5 times in my life. Mono is usually once and then you are immune to it from there. In 1994 my spleen enlarged to 17lbs and was removed. I have not had many good days since 1994. Hopping from one doctor to another over the years and a horrible bout with Optic Neuritis I was finally referred to a MS specialist. I provided all of my medical record back to 1994. I was then told that MS could be documented back to then. The medications that I have been prescribed has improved my life but there are so many issues that drugs can’t fix or cover up. I can thank MS for a failed marriage but I have an awesome 18 year old daughter who has lived with me until this past September 09. The one statement that my ex said was “you have been trying to die for years why don’t you just lay down and die”

I want to send support but it will be after September before I can begin to make donations.

Again thank you for your newsletters.

Brian A. Berry

Huntsville Alabama

Anonymous said...

I was dx in 1998, but I'm sure I had MS and/or FMS at least 20 years earlier if not before.

As a kid I had tonsilitis a few times every winter. I had viral pneumonia twice. I had measles twice, the second time very, very badly. My chicken pox experience was also very extreme. I had all of the childhood diseases worse than most people.

At a very young age I had to urinate very often. My mother went so far as to talk to the pediatrician and we did urine collection (picture a 7 yr old girl having to pee in a bedpan for days in order to see if she was peeing too much!). He just said that I probably had a small bladder.

Later, in h.s. and uni I had frequent bladder infections. At uni they gave me sulfer drugs. At each new attack the color changed. I peed a rainbow for months :-0 .

I remember suffering from annoying "feelings" in my back from age 7. As a teen the pain in my neck, shoulders, back became extreme, but I figured everyone who schlepped 15 lbs of books back and forth to school had the same pains, so I didn't complain.

I've always felt pain when walking through sand. It was difficult when I was in basic training in the Israeli Army. I usually ended up at the end of the ranks when we had long marches in the field :/ .

I don't know if there are "dots" here to connect adding up to MS or anything, but I'm sure I had IT or FMS from the pain that I silently suffered for so long.

An interesting point is that neither my DH nor I had mono, but both of our daughters did at very young ages - 1 yr and 6 yrs. That probably makes us genetic carriers of it.

Who knows? There wasn't any treatment for MS 58 yrs ago, so I guess it wouldn't have made a difference if all of this had been tagged.

Whatever . . . .


Anonymous said...

i had 3 brothers who thought it hysterical that i lost control of my bladder if they made me laugh. happened too frequently.heat always bothered me esp in nursing school. i passed out in a class also passed out in a clinical meeting, would get preshift info at work and was claustrophobic due to the heat .so many other things toomany to type but think this is very true for me.

Anonymous said...

I have had weird things my entire life when I think back. At the age of 7 I remember always having the feeling of sand in one of my eyes and my mom taking me to the Dr. It drove me crazy...I would go to sleep whenever we were in a car, I was always tired...I had terrible leg aches...Mono at 16, I remember telling the Dr. that I couldn't make a fist, that my hands were so tight feeling...of course he had no idea what that was about...My mom also has MS..we never worried though, not knowing that you could have that gene or weak link??? Now my brother that is 48 yrs. old is in the hospital with unexplained weakness and numbness in his limbs..His dr. does not feel that it is MS!!! HELLO...

OrganicBiscuit said...

Stuart, I was never able to compete at sports, gym class sucked, I had mono as a late teen/early adult, was labeled a hypocondriac my ENTIRE life, then labeled as "nuts". I did become an EMT and worked for several years as an EMT and Paramedic driver for the 911 service in my county. I got out of that, and slowly and steadily withrew, leaving lifelong friends behind. I was finally diagnosed by a competent Neuro just two months after a DO at the same facility told me that what I was describing to him was not possible and did not happen. He talked "down" to me, as if I were a child, and did so in front of my family. While I don't know that you are onto somethng, you probably are, and I thought this was an amazing post.

Anonymous said...

Hi Stuart,

I have watched your podcast about having MS as a child. I solidly believe i started with MS as a child, many times i would wake up to the fact i had no use in my hands-couldnt even hold a pencil! It slowly wore off as the day went on and yes i too was labled a hyperchrondiac. Mum always shouting at me as she believed i was being lazy,in fact i was just too worn out to move alot! I also had pins and needles down my legs and i too was rubbish at gymnastics.

Over the years my symptoms came and went until i was 30 years old when they diagnosed me with MS-i had only been married a few months! it wasnt a shock though,more of a relief at last i had a name to what was going on with me.

Im 45 now and in a wheelchair but like you said in your podcast i can go a very longway back symptom wise and i thank you for doing the podcast and highlighting it.
Well done and i look forward to more of your podcasts.

All the best from

Linda (over the big pond in the UK) :o)

Tessa said...

I know I had issues when I was a kid! Clumsy sometimes & athletic others... never made sense! I had trouble focusing sometimes & was a rockstar at focusing other times... I had my first "real" MS attack when I was 22, so still pretty young.

I was dx at 24 and am now 45 - had tons of issues but I now know I have CCSVI and had angioplasty to fix it on July 21, 2010! There is now a light on my path to recovery :)

Great blog - pleased to discover you!

Tessa :)

Cynthia said...

You are so right! After watching your podcast, I was like "What"?!! I had Mono twice in high school, had the same boy friend and he never got it. My family moved from NY when I was 7 years old and every summer we drove from CA to NY and I always had to go to the bathroom, and was told to "hold it", and it was really hard. I remember 1 summer it was really hot driving through Arizona, our car didn't have air in those years, and I almost died! The doctor told my parents it was because of my "heart murmur" from my old scarlet fever. But, maybe not??? I was never good at sports, bowling, even playing pool, I couldn't aim or leaned too much to one side. Thanks for making me think about all these things. Maybe the MS Society could do a study on all of us, just to find out if we did have MS at a younger age.

Anonymous said...

Reading thru these comments is very interesting--almost as diverse as the MS symptoms that each of us may or may not have so it would be very hard to find a pattern. I rarely saw a doctor growing up. Hardly needed to. I didn't know I had MS until age 57 and it was a surprise. That being said, I HATED GYM with a passion at school. I was always chosen last for teams. How much was attitude and how much was ineptitude i can't say. I didn't have a problem with tingling or numbness. I was a daydreamer to some extent. I probably had mild ADD but I didn't know that at the time and it was not a known entity when I was growing up. I became a decent student but had to study hard. I took a speed reading coarse in 6th grade or so, but could never ever pass the tests to remember what I had read! I was the only one taking the course that could not get ahead. I was an avid reader, however but not a great test taker.In my early preteen days, I remember that once in a while, while shopping with my mom, my legs would get very tired and I had to push myself to keep up. I took up jogging after my first son was born...maybe I was about 30; I don't know why I did that, I just decided one day I would. I continued to jog regularly (though slowly) while all my kids were growing up for several years and I went to exercise classes.
I stopped exercising when I got into playing with my computer which I much prefer to do. I haven't exercised since, not because I can't, but because I don't have the passion to do so. I tried biking the other day with my husband... I was a bit shaky - definitely out of shape. I did a lot of biking when I was younger and biked with my kids in my 30's and 40's. Never a problem. I had erethyma no dosum in college, and I had mono in college. I never had mumps but had measles and chilcken pox when I was 6. I will say, however, I have never been a high energy person, but I chalked that up to my personality not to any disease process. BTW I was a bed wetter til I was about 13 at which time it stopped suddenly. I had one child also who was a bed wetter, but that ended before kindergarten, I think. Far as I know he does not have MS, but he has some other problems. He has not had a Brain MRI.
My daughter, who came down with MS three years before me, just before she turned 20, did not have mono that I know of. She was much more athletic than I ever was, still is, in fact. She always had little complaints here and there and went to a doctor far more times than I ever did, but nothing would lead us to think she had MS until ON and TM in college. The MS hugs started with me a few years before I was diagnosed, but I had no idea what they were and neither did my internist. Once in a while I had a feeling of mild sensory weakness in my arms, but nothing I really gave any heed to. No doubt I had MS a long time even as a child, but I really did not know or suspect anything. I have no siblings, but my parents did and no one was known to have MS or symptoms that I am aware of and besides, that was before MRI. MS was rather rare back in the day.Today it is very common that I run into people I know who have MS or know of of someone who has MS.

Jo said...

At 14 I was running to catch the bus with my friends..My leg gave out. I cut my knee really bad. My friends thought it was hilarious because they said I was just running along and then BOOM. At 15-I was bowling with a group of friends and we decided to bowl with our opposite hands. My leg gave out AGAIN. We all laughed. This whole time I was skipping school to go home and sleep. Yeah, I know pretty lame. I was always exhausted. That started in the 6th-7th grade. Should have known something was wrong then. BUT I did not. I never held down a real job. I worked in bars where I could make my own schedule. Till I got diagnosed and realized that might be why I was falling all the time. Why I was numb. Why my legs burned. Why my vision sucked. THE END.

Anonymous said...

Yes, I was a bit of a couch potato as a child, yet during the summer was always very tan, from being outside and getting plenty of Vitamin D. Hated PE always, In hi school teacher knew it was me whenever a ball would be going in the wrong direction. Whenever it would get very hot, which wasn't often where I grew up, I'd get sick to my stomach.

I had mono when I was 15. After they drew my blood, I left the clinic, and fainted on the sidewalk. 2 firsts for me. It turned out that my numbers were so high, that when I returned to the clinic, I was 'the girl with the high numbers'. Think I made 'Blood Suckers Journal'. The 1969 October edition. Back then they treated the symptoms (does that sound familiar?), but did nothing for the mono, except demand bed rest. I got it in October of my 2nd year in hi school, and was out of school pretty much the whole year. But, I begged to go back for the last 2 weeks in June. Blood tests that followed didn't show the mono to be gone, until I was 18. I told this to a doctor who thought I had mono when I was in my early twenties, and he informed me that just was not possible. I do remember felling many similar feelings to my PPMS now, that I had when I was really sick with the mono at 15. Of course fatigue, but also the feeling of the blankets being too heavy on my legs, things like that.

Then, in my mid twenty's having my thigh go numb, Or my hand. Not long lasting, but enough to go to the doctor about. I had many strep throats, that would hit me so hard, and so fast, I'd have to actually crawl to the phone, to call for help, as I lived alone then. It aways took me forever to get ready to go somewhere. I'd take 'sick days' from work, which I'd call 'Mental Health Days', just to sleep. I continued to faint easily. At one time the spells would actually hurt, and afterwards, for days I'd feel like I'd been hit by a bus. When I saw a doctor about that he told me, that some people just faint, and that his Aunt Edna had that problem. He did run a test though, and I was declared to be just fine.

Oh, I went into my 20's, was that too far? Sorry if it was...

Anonymous said...

I believe I had MS. as a child. I was exposed to second smoking at birth, farm chemicals usually in double the dose and both parents had addiction problems (stress). I had shingles as a toddler and at thirteen.
I was always tired and fatigued but I played hard and was coordinated but clumsy. I studied hard but could not understand why I could nor recall. I was thought to have had Mono in high school....fatigue and extreme headaches. As a nurse I qualified to work in burn unit, ICU and Dialysis etc. I experienced strange symptoms always. At 38, I was dxed with CFS and FM. I had 3 lesions on MRI. Kicked out of UBC MS clinic because I refused to see a psychiatrist. At 53 I had 26 lesions and neurologist said I probably do not have MS. "you probably won't qualify for the drugs." Went to MS clinic and neuro. said what else could it be but MS. I am now secondary progressive MS. EVEN WITH MY KNOWLEDGE BACKGROUND I WAS ABUSED BY THE SYSTEM. Yes looking back I had MS has a young person. In CANADA with public health, I am labelled with MS and therefore can not receive testing for vein problems for CCSVI. Nothing has changed we are discriminated from childhood to seniors.