View Full Version : Was I Misdiagnosed? (at age 7)


AndrwAR471105
06-23-17, 09:30 PM
I was diagnosed with ADD at age 7 way back in the 1977, well before the ADD-overdiagnosis craze of the 1990's. I have little memory of it, but my mom tells me I was on a Ritalin prescription for 3 years, until age 10. And she tells me it "helped" (at least from her perspective as a stressed-out parent).

Why was I diagnosed? Like most kids, I certainly had my hyper moments. I was also a rebellious kid who liked to question authority a little too much (both at home and school). I had a lot of mental energy and aced most school work with ease. I was one of the most "gifted" kids. And I liked to spend a lot of time alone, reading in great detail about subjects I was interested in, amassing a vocabulary well beyond my years. I certainly didn't lack attention and focus. And I was very thin (remember this for later).

But I was a "troublemaker". So much so that my parents took me to a doctor to see if there was any way to "calm me down". Enter Ritalin.

I don't remember if I noticed any difference while I was on it, but if their intention was to lower my energy for the long-term, it worked. All too well. The cessation of Ritalin during age 10 roughly coincides with the earliest stages of puberty, so it's tough to say which was the more important factor. But my personality and energy level (both mental and physical) started changing dramatically around that time.

Between 11 and 15, I lost every academic advantage I previously had. School work became painfully hard and my grades got noticeably worse. Concentration became difficult. No longer could I wait til the last minute and still get an A+ anyway. I had to study hard, and often the information still wouldn't stick. I got my first F in 7th grade. I eventually dropped out of school in 11th grade. The material was just too overwhelmingly complex and difficult to remember. I also became pudgy and physically lethargic during this time, while I had been rail-thin pre-puberty, even though my diet didn't noticeably change. I may have been "hyper" before, but now I was tired and fatigued most of the time.

My social life among my peers also suffered. Up through age 10, I was outgoing and charismatic, a quick-witted class comedian who was liked by the other kids. I had more friends than I even wanted (often preferring the company of a good science book), although the teachers and school staff saw me as a rebellious "problem child". But around age 11 (post-Ritalin), all that changed. I just didn't fit in anymore. My personality became dull and boring, and the other kids tended to want nothing to do with me. And I was often the target of bullies, both verbal and physical.

My mental and physical energy levels have never recovered. I'm now 47 and have experienced progressively worsening tiredness, fatigue, chronic headache pain, and brain fog my entire adult life. I've constantly struggled to keep myself afloat financially, never achieving an income too far above the poverty level. (I'm currently homeless and living in my car so that I can afford to support my 2 kids)

I've tried all kinds of diet changes and vitamin/supplement/herb combinations over the years. To no avail. I even became a gym rat and lost 50 lbs in 1998, and have kept it off ever since. But no noticeable benefit ensued. Between 2000 and 2003 I was prescribed a few popular anti-depressants but none of them made a difference.

So what about adult ADD medication? Here's where it gets strange. When I was 23 I was prescribed a Ritalin substitute (I lived in CA where Ritalin was illegal at the time). No noticeable effect. Then at age 30 I was prescribed actual Ritalin (in AZ). Again I noticed nothing, although I tried multiple dose variations.

But many years later, at age 45, I participated in a clinical trial testing a new formulation similar to Adderall. It felt great! My energy, mood, and focus were all greatly improved (at least for a few hours). About a year later a friend gave me three of his Concerta's (30mg) to try. I took one on three different days and experienced almost the same "high" I got from that Adderall-like experimental drug. This is while knowing that they are two different kinds of drugs and that Concerta is merely an extended-release version of Ritalin that didn't work for me years before. Then a few months ago I finally got my own prescription for Adderall (30mg XR) and experienced almost the same positive effect (at least for awhile).

So why did the ADD drugs not work when I was 23 or when I was 30, but they're working now at age 47? The only theory I can come up with is that my natural energy level had progressively declined with age so much in the ensuing years that an effect that may have been too subtle to notice at ages 23 and 30 is finally noticeable to a much weaker and achier 47-year old body. Does that sound plausible?

And the most important question: After reading my long history, does it sound like I may have been misdiagnosed at age 7 and never really had ADHD to begin with? And if so, could the Ritalin at that young age have produced the very problem it was supposed to treat(loss of focus/attention)? Along with other side effects, like the loss of physical energy. That's of course what the anti-ADD-drugging people will tell you. But I honestly don't know which side to take on this.

Another interesting anomaly that would seem to strengthen the anti-Ritalin argument is the example of my half-brother. We have different fathers. His father is shorter than my father. Yet my half-brother is a good 2 inches taller than me. He never took Ritalin like I did. Hmm, isn't one of the anti-Ritalin arguments that it stunts your growth? We also had the opposite body transitions post-puberty. He started chubby then became lean and muscular during puberty. I started rail-thin then became flabby and weak during puberty. Could the Ritalin have been the deciding factor?

Johnny Slick
06-23-17, 11:35 PM
That's a really hard call and probably at this point something you can only really answer for yourself. Regarding the drugs, different drugs do different things to people, and perhaps your brain chemistry changed to make dopamine reputake inhibitors work more effectively. As for anti-depressants not working, they probably wouldn't do much if your brain issue isn't so much

I sound like a broken record on this but I think you owe it to yourself to try to figure out how to get therapy. As someone who was never diagnosed with anything when I was a kid even though I had the most obvious case of full on hyperactive style ADHD in the world (in fairness my dad in retrospect must have also had it), I thought I had some kind of anxiety related issue for *years*. In fact, I even saw a therapist in the early 2000s who "wasn't into labels" but implied as much. But no, it turned out that what I had all along was ADHD and the stuff that really caused me grief and made me see a therapist again - my inability to get close to others and this cycle I'd go onto where I would just be easy going and cool forever until some seemingly small issue caused me to be Mr. Drama, much to the consternation of people around me - were just outgrowths of the way I'd coped with this condition for decades.

The thing is, just knowing that you have ADHD doesn't make all that other crap go away. 7 months into therapy I'm at a point to where when I reflexively catch me insulting myself I almost as refelxively say "no, Slick, that's not true", but it's taken a while and I've had to open up and unpack a lot of things in the meantime. If the meds work, your brain will operate differently now. You've got to figure out which of those coping mechanisms you've created don't matter anymore.

If you absolutely can't do this right now, make it a goal but also... from one child of the 70s to another, have you read Zen and the Art of Motorcycle Maintenance by Robert Pirsig? There are a lot of concepts in there that have helped me a *lot* since my diagnosis. On a more ADHD centric level, there's the old classic on the subject, You Mean I'm Not Lazy, Stupid, or Crazy? by Kate Kelly and Peggy Ramundo.

The big thing about this book is that it *is* about the coping mechanisms much more than the ADHD itself.

Lunacie
06-24-17, 12:16 PM
Why did your parents or the doctor decide to stop the Ritalin when you were 10?

Sounds like that along with puberty may have triggered anxiety and depression.
Weight gain is very common in both of those disorders.

The struggle with school work and social situations caused a lot of stress, eh?

As far as the meds now, I've seen so many people complain that after taking a
break from their stimulant meds, they don't work as well anymore. So Ritalin
wasn't going to work as well, especially if it was a form of generic that missed
the mark on effectiveness. I hear that a lot about generic meds.

Also, what works before puberty can change after puberty. So even if you'd been
able to continue with meds, you might have needed a meds change when you
were 10.

Your father is only half of your genetics. I've met lots of guys who were taller
than their dad, because they've gotten their height from their mom's side of
the family. My daughter's fiance is 6 ft 4 in. His dad is only 5 ft 10. His uncles
on that side are about the same height as dad. His mom is tall though so he
probably inherited his height from her family. His son, at age 23, stands
between dad and grandpa on height.

Fortune
06-24-17, 12:50 PM
One thing about Ritalin - it's a stimulant. It doesn't calm people down normally, it hypes them up. If it calmed you down, then that's probably a sign that you had something like ADHD going on, if not ADHD itself.

AndrwAR471105
06-24-17, 01:12 PM
Why did your parents or the doctor decide to stop the Ritalin when you were 10?

Good question. When I asked my mom recently, she just said that it was determined that the drug produced the desired result and I didn't need it anymore. Which conflicts with my own memories of still getting into trouble and being disruptive in class at that age (5th grade). But the very next school year I became more withdrawn and introverted, and started getting bullied relentlessly by other kids. Was it a mistake to take me off the Ritalin when they did, or was it a mistake to prescribe it to me in the first place?


The struggle with school work and social situations caused a lot of stress, eh?

Definitely. And I've had difficulty handling stress ever since. Instead of rising to meet the challenge, my brain starts shutting down when confronted with even minimal stress, which of course can make the stressful situation even worse (for example, if someone is honking at me in traffic, I'm then more likely to make a driving error).


Your father is only half of your genetics. I've met lots of guys who were taller than their dad, because they've gotten their height from their mom's side of the family.

That's true, but my half-brother shares the same mom. So if his dad is shorter, I'm curious what the odds are that he'd naturally end up significantly taller than me.

mrh235
06-24-17, 04:06 PM
I don't think you were misdiagnosed I'd speculate you just weren't on the right dosages when you were younger or perhaps you didn't understand your condition that well. Understanding our own ADHD is confusing as hell. I always had trouble figuring out when lower dosages didn't work well for me because it required a lot of self-awareness that is very hard to have with ADHD.

Lunacie
06-24-17, 06:21 PM
Good question. When I asked my mom recently, she just said that it was determined that the drug produced the desired result and I didn't need it anymore. Which conflicts with my own memories of still getting into trouble and being disruptive in class at that age (5th grade). But the very next school year I became more withdrawn and introverted, and started getting bullied relentlessly by other kids. Was it a mistake to take me off the Ritalin when they did, or was it a mistake to prescribe it to me in the first place?



Definitely. And I've had difficulty handling stress ever since. Instead of rising to meet the challenge, my brain starts shutting down when confronted with even minimal stress, which of course can make the stressful situation even worse (for example, if someone is honking at me in traffic, I'm then more likely to make a driving error).



That's true, but my half-brother shares the same mom. So if his dad is shorter, I'm curious what the odds are that he'd naturally end up significantly taller than me.

Sounds like neither your mom or your doctor understood adhd and the meds
that are used to treat it. Probably fairly common back in the 70's.

Genetics are an odd thing. Even fraternal twins can end up being different
heights as adults. One can have adhd while the other doesn't. Even eye color
can't be predicted in all cases.

Glad you've found a doctor now that is more knowledgeable about treating adhd.
You can learn a lot from reading threads in this forum, and there are some
very helpful books nowadays. Another source of good information is videos
by Dr. Russell Barkley.

ginniebean
06-25-17, 12:15 PM
Why did your parents or the doctor decide to stop the Ritalin when you were 10?

Sounds like that along with puberty may have triggered anxiety and depression.
Weight gain is very common in both of those disorders.

The struggle with school work and social situations caused a lot of stress, eh?

As far as the meds now, I've seen so many people complain that after taking a
break from their stimulant meds, they don't work as well anymore. So Ritalin
wasn't going to work as well, especially if it was a form of generic that missed
the mark on effectiveness. I hear that a lot about generic meds.

Also, what works before puberty can change after puberty. So even if you'd been
able to continue with meds, you might have needed a meds change when you
were 10.

Your father is only half of your genetics. I've met lots of guys who were taller
than their dad, because they've gotten their height from their mom's side of
the family. My daughter's fiance is 6 ft 4 in. His dad is only 5 ft 10. His uncles
on that side are about the same height as dad. His mom is tall though so he
probably inherited his height from her family. His son, at age 23, stands
between dad and grandpa on height.

Back then there was no diagnosis for adult ADHD. You were supposed to grow out of it.

Lunacie
06-25-17, 05:07 PM
Back then there was no diagnosis for adult ADHD. You were supposed to grow out of it.

He wasn't an adult yet, he was only 10 when everyone decided that he was
cured, or had outgrown his adhd. Never mind that it might simply mean that
the meds were working. Once the meds were taken away the symptoms all
returned. Wonder if the parents mentioned that to the doctor?

Cyllya
06-25-17, 06:02 PM
But many years later, at age 45, I participated in a clinical trial testing a new formulation similar to Adderall. It felt great! My energy, mood, and focus were all greatly improved (at least for a few hours). About a year later a friend gave me three of his Concerta's (30mg) to try. I took one on three different days and experienced almost the same "high" I got from that Adderall-like experimental drug. This is while knowing that they are two different kinds of drugs and that Concerta is merely an extended-release version of Ritalin that didn't work for me years before. Then a few months ago I finally got my own prescription for Adderall (30mg XR) and experienced almost the same positive effect (at least for awhile).

You generally shouldn't "feel" anything on ADHD drugs, ideally. By analogy, think of pain meds. Pain meds are supposed to make you not feel pain, or at least feel pain less, they're not supposed to add any feeling. Likewise, ADHD meds should just make you have less ADHD symptoms.

Stimulants can cause euphoria, which can be an acceptable side effect, but you shouldn't gauge therapeutic benefit on whether it's causing euphoria any more than you should gauge it by some other potential side effect like loss of appetite.

Since ADHD symptoms are weirdly subtle, it can be hard to tell when any treatment is working, unfortunately.

So why did the ADD drugs not work when I was 23 or when I was 30, but they're working now at age 47? The only theory I can come up with is that my natural energy level had progressively declined with age so much in the ensuing years that an effect that may have been too subtle to notice at ages 23 and 30 is finally noticeable to a much weaker and achier 47-year old body. Does that sound plausible?

What doses of the drugs did you take in all those times? (Including dose schedule.) I'd think no result means you're not taking enough.

Methylphenidate and amphetamine only give about four hours (or less) of benefit for most people, so if you just take one instant-release pill after you wake up, it's quite likely worn off by the time you're done checking your morning emails at work. Then you might even have withdrawal effects making it worse than your baseline. So for those drugs, you have to take multiple pills per day or a timed-release pill.

I think there is a statistical tendency for the timed-release pills to have better therapeutic effect than multiple instant-release pills.

Potentially relevant: methylphenidate is apparently prone to some super-fast tachyphylaxis (pharmacological tolerance). Concerta gets around this by giving what is effectively three doses, the largest later in the day. If you took the older Ritalin LA (or generics thereof) or even equal-dose instant-release pills, it's likely that you'd get inferior results.

And the most important question: After reading my long history, does it sound like I may have been misdiagnosed at age 7 and never really had ADHD to begin with?

You describe ADHD symptoms throughout your whole life, except that you were apparently doing well when you were receiving treatment between the ages of 7 and 10. Seems like you're also doing well on the new treatment? So I would guess you do indeed have ADHD and always have. What makes you think you don't?

And if so, could the Ritalin at that young age have produced the very problem it was supposed to treat(loss of focus/attention)? Along with other side effects, like the loss of physical energy. That's of course what the anti-ADD-drugging people will tell you. But I honestly don't know which side to take on this.

If Ritalin had caused such a result, it would have stopped within a week after you stopped taking it.

Good question. When I asked my mom recently, she just said that it was determined that the drug produced the desired result and I didn't need it anymore. Which conflicts with my own memories of still getting into trouble and being disruptive in class at that age (5th grade). But the very next school year I became more withdrawn and introverted, and started getting bullied relentlessly by other kids. Was it a mistake to take me off the Ritalin when they did, or was it a mistake to prescribe it to me in the first place?

Well, that's a pile of stupid. That's like giving a vision-impaired person glasses, then they are able to see well because of the glasses, then because they can see well, deciding they don't need glasses any more.

ADHD meds are a treatment, not a cure. They only work when you take them!

AndrwAR471105
07-01-17, 05:59 PM
You generally shouldn't "feel" anything on ADHD drugs, ideally. By analogy, think of pain meds. Pain meds are supposed to make you not feel pain, or at least feel pain less, they're not supposed to add any feeling. Likewise, ADHD meds should just make you have less ADHD symptoms.

I get your point, and I agree. But when I say it "felt great" or "high" (which I made sure to put in quotes), I'm referring to how the noticeable improvement in focus and mental energy produced the byproduct of improved mood. I'm the kind of person who's mood directly correlates to how effective/productive/articulate/capable I'm able to be. So when the drug improved my mental abilities, my natural response to it's effect was to feel good and less irritable than my normal self. I didn't actually feel a "high" like one would get from pot, LSD, or other recreational drugs, nor would I want to.

Or could I have the causation backwards? Maybe I just experienced the drug's "euphoric" stimulant effect, which then produced the energy boost to be more effective/productive/articulate/capable. But if so, how would that make me any different from the non-ADD college kids who use the drug to cram for tests?


Since ADHD symptoms are weirdly subtle, it can be hard to tell when any treatment is working, unfortunately.

Well, it's definitely not working anymore. :( I've definitely built a tolerance now, at least when going as high as 50mg/day (30mg XR in the AM, then a 20mg IR in the afternoon). So in my case, the "euphoria" and the therapeutic benefit went hand in hand. I'm having the exact same fatigue, lack of concentration, and depressed mood I had w/o taking anything. (which is why it's taken me so long to even have the mental energy to reply to you. Sorry for the delay.) I'm still taking 20mg - 40mg/day until this bottle runs out. But I'm clueless about what to do next. Wean off it and try a non-stimulant route? Or keep upping and upping the dosage as my tolerance builds? My doc isn't sure what to do and is waiting to consult a specialist.



What doses of the drugs did you take in all those times? (Including dose schedule.) I'd think no result means you're not taking enough.


I can't remember exactly, as it was 17+ years ago. But I know the doctor was having me try doses at the low, medium, and high ends of the acceptable range. I'm sure there was a day or two when I was taking at least 60mg.


You describe ADHD symptoms throughout your whole life, except that you were apparently doing well when you were receiving treatment between the ages of 7 and 10. Seems like you're also doing well on the new treatment? So I would guess you do indeed have ADHD and always have. What makes you think you don't?


My mom says I was doing well with the treatment. But (like a lot of people) my mom's memory is notoriously flawed. If the Ritalin helped, it wasn't in the way my parents intended (to fix my anti-authority behavior issues). I distinctly remember still getting into trouble and still being considered a problem child during those years, while also performing at the top of the class. Just as I was doing before the Ritalin. And I remember quickly starting to lose both the rebellious smart-alecky charisma and the book-smart scholastic advantage the very next year (6th grade).