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  #1  
Old 06-25-2011, 10:51 PM
Edge Of Ruin's Avatar
Edge Of Ruin Edge Of Ruin is offline
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29 years with MS undiagnosed?

I have often been asked when the onset of my MS happened and my answer has usually been 2006 after my
first MRI showed spinal cord lesions and a lumbar puncture showed demyelination and my pcp said, "I have no doubt that you have Multiple Sclerosis." A dark lesion I was told meant an old lesion. How old?
In 1977, I had to drop out of attending UC Santa Barbara University because of a myriad of symptoms matching MS and yet, although I went to several doctors, none could give me a diagnosis. But, by 1979 I was back at San Diego State University feeling almost normal again.
Then, in 1988, the MS symptoms returned and I was even diagnosed with mono. I never quite recovered and had to quit my job in 1991 as I kept falling asleep at work. I had already been diagnosed with narcolepsy.
In 1995, I was feeling better again but in 1998 all the MS type symptoms returned including excruciating headaches and often I spent all day in bed I was so weak. Still, no diagnosis.
By the year 2000, I was feeling very much better and continued feeling better, almost normal until the year 2006
when the MS symptoms returned but this time I had a smart doctor who ordered my first MRI and lumbar puncture. She saw what 7 previous doctors failed to see ; the signs of MS. I finally had a diagnosis.
So, is it possible that the onset of my MS was in 1977
and not in 2006? Going through periods of getting bad then getting better then getting bad then getting better.
Well, the diagnosis was RRMS.
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  #2  
Old 06-25-2011, 11:07 PM
gomer gomer is offline
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Only 29 years?

I was not untill an NEW & alert eye doc in 2009 noted my diplopia was a nuro-musuclar issue and said I NEEDED to be seeing a neuro. BINGO the MS can-o-worms was suddenly opened. My diplopia is MS related (confirmed)and I have had it since 1964 (I was 18) along with other SX that went back a few more years. SO for me is more like FIFTY+ years!

Gomer
  #3  
Old 06-25-2011, 11:55 PM
Redwings Redwings is offline
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Yes, it's possible that your MS could have first shown up in 1977. It's just that there wasn't a good way then to make a diagnosis of MS. People who didn't have MS were (mis)diagnosed with it -- because the indications were signs and symptoms shared by other conditions -- and people who truly had MS then were (mis)diagnosed with something else or missed altogether. It wasn't until MRIs came into common use about 1990 that diagnosis of MS became more tightly defined. So it's hard to fault doctors for not diagnosing it before then. It isn't as if the signs were obvious and they missed them. Remember that "symptoms matching MS" are also symptoms that match other conditions, and vague symptoms can't be matched to anything specific. There just wasn't enough known about MS at the time. It really was the Dark Ages of MS. Plus, there were no treatments for MS until the early 1990s, so a diagnosis before then wouldn't have helped anything anyway.

In 1991, narcolepsy wasn't an indication for an MRI. Even by 1998, a lot of doctors still weren't routinely doing MRIs for headaches. CAT scans yes, but not MRIs.

So assuming, for sake of argument, that your MS did onset in 1977. there are three implications to that that I can see. First, diagnosis was ill-defined at the time, so there isn't anyone to "blame." You'll just have to let that one go. Plus, there wasn't anything that could have been done about it then, so you'll have to let that go, too. Second, if you're more than 20 years into MS, it's possible (even likely) that you've moved into the secondary progressive phase. Third, since you didn't go on a DMD back in 2006, you'll never know how it might have affected the progression of your disease. You've had steroids to shorten the duration of your exacerbations, but steroids don't affect progression or the ultimate outcome of MS.

There's nothing you can do about the past. Spending a lot of time thinking about it falls under what Jackson Browne referred to as letting the sound of your own wheels drive you crazy.
  #4  
Old 06-26-2011, 02:24 AM
Thinkimjob Thinkimjob is online now
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That's a long time. Here in HorseTrailer as our Prime Minister calls it, the doctors will diagnose at the first neurological sign. And free-ish drugs!
  #5  
Old 06-26-2011, 06:15 PM
0485c10 0485c10 is offline
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18 years undiagnosed after being told this might be ms...never had a clue during those 18 years, just thought its the way i am...

never guess there was something wrong until i went to an ER were i was admitted with possible stroke or MS, told it was MS without a doubt and i had had MS for quite a while based upon the MRI.

I think there are some common thought process that happen to us late diagnosis. Redwing explained HOW it happened.

the ER doc told me when he gave me my diagnosis, that sometimes MS takes a while before it becomes "visible" enough to diagnose. That it was a very good thing that my ms had taken a while to become visible enough, it meant my ms was more mild.

at first i would ask the neuro, when should i have known? should i have when this happened or this? He said
there is absolutely no way to know in the present what the caused the past, it may or may not have been MS. We will never know what it was now.

For me that means i am the "Decider" of my MS history
I will decide if it was MS or not. I had ON 18 years b/4 i was diagnosed. it was treated by an opthamalogist with steroids, improved and i was told by the opthamalogist this could be MS but not diagnosed. I call that my onset symptom, but actually there is no way to know if it was MS or if it was caused by something else. MS is not the only thing that causes ON. But i decide. I had MS undiagnosed for 18 years. you had MS undiagnosed for 29 years. you are the decider of your MS history.

Next thing i worried about was what has the untreated ms done to me. Neuro #2 told me...

She doesn't treat the past or the future, she treats the present so it does not matter what 18 years of untreated MS did, she treats what it is now.

Next thing i think about was it better not to know or would it have been better to know sooner?

for me, in my case i think it was better that i did not know until i was forced to know. i meet a young person on the ms message board without insurance being told by a doc he needs meds for his MS or it could get bad.

his ms is not bad enough to qualify for disability so he is restricting his income to SSI levels to get medicaide. its like being stuck between a rock & a hard place once you are on that treadmill--tough to get off it.

I'm glad i did not have to make his decisions, i'm glad i didn't know until i qualified for disability. and that what i did in the past was not affected by my future with MS.

(it might have been nice though to have known earlier so i could have prepared better financially )
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  #6  
Old 06-28-2011, 12:34 PM
Tawanda Tawanda is online now
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I don't think it's all that weird...

I don't think anyone here can pinpoint EXACTLY when their M.S. started. Until your symptoms are bad enough to seek out a neurologist and an MRI, you may have had a mild course of M.S. going on for years, decades, etc. Although I think it is widely accepted that an environmental trigger may throw the final switch, I have heard one theory that one could actually be born with M.S. The fact is nobody knows. As for me personally, I won't we a doctor until my misery outweighs my fear. I know I had all kinds of things knocking around for years and years that were most likely a result of having M.S.
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  #7  
Old 06-28-2011, 01:40 PM
toot2818 toot2818 is offline
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Exclamation MS, sure affects everyone differently

I'm happy after 25 years I'm still getting around and I'm still happily married

Sunday we finally had a sunny day and a friend called us to go sailing on Lake Michigan. It was coool and very light winds, we were out there for a few hours. Sailing takes me far far away Of course getting off the boat was hard, guess my legs have lost a little since last summer. I sure am glad our friend understands my MS.

Toot
  #8  
Old 06-28-2011, 01:42 PM
0485c10 0485c10 is offline
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Quote:
Originally Posted by Tawanda View Post
I, I have heard one theory that one could actually be born with M.S. The fact is nobody knows.
I read that too, i wonder if we were reading the same article? it was called prenatal MS. (i think that was what they called it.) The genetic susceptibility is in the DNA but the environmental trigger whatever it is was encountered in the womb to start MS before a person is born..
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  #9  
Old 06-28-2011, 02:16 PM
Lendi Lendi is offline
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Edge of ruin, how much have you checked out your narcolepsy DX. Although Narcolepsy and MS are very, very different diseases they share a remarkable amount of the same symptoms. It's possible, but as some has said who would ever really know, that your earlier sx were sleep deprivation. That's how it was with me, anyway. I've always, always had narcolepsy with cataplexy attacks since I was a child, but it was just luck of the draw that I ended up being officially DX'd with both at the same time.
  #10  
Old 06-28-2011, 04:21 PM
greekd3 greekd3 is offline
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Did your MRI only show lesions with contrast INjection?

Quote:
Originally Posted by Edge Of Ruin View Post
I have often been asked when the onset of my MS happened and my answer has usually been 2006 after my
first MRI showed spinal cord lesions and a lumbar puncture showed demyelination and my pcp said, "I have no doubt that you have Multiple Sclerosis." A dark lesion I was told meant an old lesion. How old?
In 1977, I had to drop out of attending UC Santa Barbara University because of a myriad of symptoms matching MS and yet, although I went to several doctors, none could give me a diagnosis. But, by 1979 I was back at San Diego State University feeling almost normal again.
Then, in 1988, the MS symptoms returned and I was even diagnosed with mono. I never quite recovered and had to quit my job in 1991 as I kept falling asleep at work. I had already been diagnosed with narcolepsy.
In 1995, I was feeling better again but in 1998 all the MS type symptoms returned including excruciating headaches and often I spent all day in bed I was so weak. Still, no diagnosis.
By the year 2000, I was feeling very much better and continued feeling better, almost normal until the year 2006
when the MS symptoms returned but this time I had a smart doctor who ordered my first MRI and lumbar puncture. She saw what 7 previous doctors failed to see ; the signs of MS. I finally had a diagnosis.
So, is it possible that the onset of my MS was in 1977
and not in 2006? Going through periods of getting bad then getting better then getting bad then getting better.
Well, the diagnosis was RRMS.
This is important to me as I have been checked, but have never had the contrast or a lumbar puncture..

Help is appreciated.
  #11  
Old 06-29-2011, 07:45 AM
Shallwearpurple Shallwearpurple is offline
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limbo

I have not yet been diagnosed. I've gone to a number of doctors for almost 10 years and have had symptoms the entire time, though they have been getting worse and more numerous in the last 2 to 5 years.

Even though I went from doctor to doctor, I didn't connect my symptoms to one another. I really thought it was a combination of treatable, normal things. I wasn't in limbo. I thought a lot of this stuff was just my normal.

I didn't suspect MS, nor did a doctor, until a few months ago. Now I'm in limbo, wanting a diagnosis and answers.

Before, I worried and was angry each time I was put off by a doctor, but mostly let it go after a couple of months.

Now, I really want answers and don't like being in limbo. I prefer when I didn't know I was in limbo since I can't get a straight answer.

Be thankful that you had all those years in between when there was good health and you didn't know the difference or worry about it since there wasn't treatment any way.
  #12  
Old 06-29-2011, 09:06 AM
rdmc rdmc is offline
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I was probably undiagnosed for many years, but in my case it wasn't the doctor's fault really. It's just everytime I have some weirdness it'd clear up within a month and I never pursued a further explanation.

Numb arm in college, doc said pinched nerve, it eventually went away, so I figured he was right.

Bout of vertigo that hung around for a couple weeks a few years later, no explanation, but it went away.

Same with the bouts of hand tremors and arm weakness, severe muscle spasm in lower back and leg weakness...the symptoms would always go away after a couple weeks.

My diagnosing neuro said probably first presentation was the college one...but I didn't seek answers till my mid 40's when everything seemed to hit at once.
  #13  
Old 06-29-2011, 09:22 AM
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mjan mjan is online now
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Quote:
Originally Posted by toot2818 View Post
I'm happy after 25 years I'm still getting around and I'm still happily married

Sunday we finally had a sunny day and a friend called us to go sailing on Lake Michigan. It was coool and very light winds, we were out there for a few hours. Sailing takes me far far away Of course getting off the boat was hard, guess my legs have lost a little since last summer. I sure am glad our friend understands my MS.

Toot
HI Toot! Just wanted to say I too am from Milwaukee and if you ever want to communicate, my email is in my profile. Its ok if you choose not to..LOL

Sailing on Lake Michigan..how wonderful; it can be cooler than on land. BUT does the SUN get to you at all? And did you get your "sea legs" back after sailing?

Warmy, Jan
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