Nervous for tomorrow 😬

In about 12 hours I’m going to see a neurologist about my ADHD ( as well as a learning disability and possibly autism ) I know it’s generally not how people get diagnosed but it’s mostly paperwork for accommodations. That being said, I don’t remember any of my previous experiences so I’m really worried. I have no idea what’s going to happen but I’m scared something will go wrong…I don’t have the best history with mental health professionals so we’re hoping this is a good compromise

Any advice ( or encouragement ) would be greatly appreciated!!

Now that sounds really interesting! Sorry, I know you are nervous, but my experiences with neurologists all revolve around epilepsy. I’ve had EEGs, CT scans, MRIs, and everything else, awake, sleeping, and otherwise. I would imagine that a neurologist would look at ADHD, LD, and ASD in a very clinical brain function test kind of way. If you think about it, you can’t possibly do anything other than your brain is going to do, so you really shouldn’t be nervous about something that you can’t consciously change. Neurologists spent a lot of time studying what part of the brain controls what functions, what chemicals in the brain control what activities, and stuff like that. You might spend a bunch of time just talking and answering questions, you might get referred for some tests (none of the ones I mentioned above hurt), or there might be even another route that I don’t know about. Either way, I think you are going to be fine. And remember, no matter what happens, you won’t get banished from the tribe of brains. :wink:

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Thank you so much for the response, I was kinda concerned no one would see it :sweat_smile:

I hadn’t thought about it that way! I guess it’s easy to get wrapped up in so many what-ifs you forget reality :thinking:
I don’t really mind taking test, especially now that I know they won’t hurt. I like looking at things from a clinical perspective and honestly that’s part of why I have such a hard time with therapist and whatnot ( their line of questioning doesn’t immediately seem logical )
If you don’t mind me asking, how old were you when you went to the neurologist? Was it scary? I’m not exactly little but I always seem to feel like a kid at the worst moments…

The very first time I went to a neurologist, I was baby, so I don’t remember. I started having seizures as a baby and they later discovered a rare childhood brain tumor that was thankfully benign. I had surgery when I was seven, but I continued to see a neurologist because they honestly couldn’t tell that my seizures had stopped and it was just the ADHD in me. I was all fixed with a giant scar on the side of my head that my hair covers except when I put it in a ponytail.

Fast forward to my first pregnancy when I was 27 years old. I had a tonic-clonic seizure or two in a nine-month pregnancy, what they used to call grand mal seizures, so they watched me and left me alone. The second pregnancy brought a few more of those, but not enough to worry. Then, suddenly in 2009, I started having seizures that I wasn’t aware of, but I was a stay at home mom, so someone was. One day, my husband returned home from work and my four-year-old told his daddy that mommy was laying on the floor spitting, humming, and shaking earlier. That freaked out my husband and he promptly scheduled me for the local neurologist, where I had a seizure in his office. The slightly inexperienced doctor bombarded my body with a high dose of medicine to get it active quickly and I got a referral to a clinic that specializes in epilepsy. They did the tests that had become old hat when I was a kid. They determined that the seizure activity was on the opposite side of my head from my brain surgery, so scar tissue was not to blame. The wise doctor that was assigned to me decided that he didn’t care what was causing it as long as he could control it. I have been seizure-free ever since but refuse to go off of my medicine because they still can’t tell me why I was having them. I have too much to lose if they return when I go off of it: injuries to me or someone I love if I have a seizure while driving, loss of my license, and thus loss of my job, etc.

Anyway, that is why I’m so calm about neurologists. Sorry the response was so long. :slight_smile:

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It wasn’t long at all!! I enjoyed hearing your story :blush:

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UPDATE: I survived the appointment!!
Still not 100% sure what happened because I’m very tired but it seemed to go ok. I basically sat in a room and did a computer test then talked to the doctor. They ordered a blood test as well as a genetic tests and ( strangely enough ) suggested several vitamins. There was also mention of visiting a neuropsychologist but I have no idea what that means. There’s been no definitive diagnosis but they think I have ADHD and no autism ( the LD will be tested by someone else )
So yeah I don’t really know what to think :neutral_face: has anyone heard of a doctor suggesting ( not prescribing ) vitamins as treatment for ADHD?? Has anyone see a neuropsychologist before? I’m still trying to figure this all out :stuck_out_tongue_winking_eye:

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I’m glad to hear you survived the appointment and that you are closer to having a diagnosis. Sorry I haven’t been around very much lately, I will try and make some posts sometime soon.

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No problem! Take your time :yum:

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I just had an…interesting conversation with my mom. Turns out that I had gone through preliminary testing as a kid but had never been officially diagnosed with anything. I hate admitting this, feels like if I write it down that makes it true :pensive: I never really thought about myself until I started learning about ADHD. It changed my life in so many ways and allowed me to grow. Now, I’m scared of losing such a major part of myself! I guess what I’m trying to say is…

I might just put this on my wall and stare at it whenever I feel like crying :sob:

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It’s a diagnosis that not every practitioner is comfortable making. I was diagnosed back when it was not widely known. The higher popularity of the ADHD diagnosis later meant that it was also getting backlash as an excuse for bad parenting. Now practitioners felt like they needed more evidence than experiential reports from parents and patients to support the diagnosis of ADHD. I had to get a re-diagnosis before I could get a psychiatric nurse practitioner to give me medicine for ADHD. The psychologist wouldn’t say anything more definitive than I probably had ADHD and the medicine working for me would be the diagnostic tell. I think half the problem is that coping mechanisms that I have developed in 40 years of life mask my visible (to everyone else) symptoms.

How did your appointment go?

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Ahhh ok. I think it’s definitely hard to explain that something’s a problem when you supposedly know how to handle it

My appointment went fine I guess. He looked at my general health and suggested a couple vitamins that I looked up. Something feels kinda off about the situation but I’ve decided to stay with this doctor and see if it’s just nervous jitters. We did a blood and genetic test so the results will be discussed next time. My concern right now is figuring out what the heck a neuropsychologist is ( I’m being referred to another office for learning disabilities ) the lack of conclusion is frustrating but I guess that’s life :sweat_smile:

A neuropsychologist is someone who specializes in the brain (neuro) and its role in behavior, says my knowledge of medical roots. But, you got me interested, so Careers in Psychology says:

Neuropsychology is a branch of psychology that is concerned with how the brain and the rest of the nervous system influence a person’s cognition and behaviors. More importantly, professionals in this branch of psychology often focus on how injuries or illnesses of the brain affect cognitive functions and behaviors.

This would be the special psychologist who sees people with autism, ADHD, sensory processing disorder, PTSD, etc. This would definitely be a person who is more knowledgeable about an ADHD brain.

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Sorry, I missed this one. I was busy stressing about the upcoming scout campout and photographing an important annual event. As for vitamins as treatment, yes, I have heard of that. I went to a lecture by Henry Emmons, MD, the author of The Chemistry of Joy. You should check it out. At his clinic, he treats depression with elevated doses of Omega-3s. Now, this happens in my house because I’m the parent and the one in charge of medical decisions in my house, but you should talk to your doctor about any extra vitamins you want to take…but I give my son 1000mg of fish oil each day to regulate his moods. He’s never been diagnosed, but I know he is bipolar like his father. Since starting that, I haven’t had to soothe the broken heart that suddenly started mourning the favorite pet that hadn’t been mentioned in ages. It works for me, so yes, I have heard of it and don’t think it is that strange.

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Ohhh ok, thanks for the explanation.

That sounds really fun!! I’ll definitely check out Henry emmons

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I know it’s been a while, but there’s been some progress!!
My mom just scheduled an appointment with a neuropsychologist 5 weeks from now. Something about the timing is supposed to match up with the next time I see the neurologist? I’m not sure. Anyways, I agreed to it bc I know how hard it is to get a spot. However, I didn’t have a change to look into this persons until tonight and oh boy do I regret saying yes :grimacing:
There’s a couple things I have an issue with: ( total post under the cut, but there’s a summary )

whole explanation

( disclaimer, I’m a teen who’s just trying to do their best. I don’t want to make this harder for my parents but I need to know who I’m working with and make sure nothing bad happens again. it’s just that I’m very involved in my own health bc I kinda have to be )

  1. The patients don’t receive the results of their testing. If they want to know, a special appointment has to be scheduled. Parents aren’t supposed to tell the kids they’re tested at all. This is supposedly to prevent stress, but I have a big issue with keeping kids in the dark, especially about their brains. “Instead, explain to your child that he/she is meeting with a professional to do ‘work’ and ‘activities’.” Nothing about this situation sits right with me
  2. The website goes round and round on itself. There isn’t any clear information on what tests will be done. Rather, there’s a short page on the different stages of development, a section about the staff, and instructions on pre-test preparation. It briefly says what a neuropsychologist evaluations purpose is, but once again in unclear terms
  3. I get the impressions this isn’t geared towards peope like me. They claim to test up until college but the language seems more for parents of young children. Apparently, they can do testing if your kid wants to go into a gifted school ( not really what I’m looking for, but it does make me wonder if they know professor Xavier :joy: ) It seems exclusively meant for parents -not that that’s a bad thing- it’s just not what we’re aiming for.
  4. Honestly, this last point is a bit of a stretch but I think it’s important to note. I genuinely that any attempt at self-advocacy will be seen as an unwilling to cooperate/behavioral issues. Once again, this could just be my nervousness but the whole vibe I’m getting from their website doesn’t seem very child-friendly ( they don’t seem to be focused on the patient ). For example, I have to take an IQ test. This is the only test they specifically said online. I do not want to take an IQ test ( I will not take an IQ test without putting up a fight ). I don’t believe I have a choice. Or that I will even be recognized as someone who extends beyond their actions. I understand that part of this fear is from past experiences ( hehe, I found some bad memories…yaaaay ) but it wasn’t a one time thing and I understand the warning signs. I refuse to be a victim in my own life again.

Summery: they aren’t clear, theyre making it hard for kids to know what’s going on/keeping them uninformed, and they seem to serve a different purpose then what we’re looking for and I don’t feel like I would have any choice with anything should we go.

My mom will meet with them and I’m not allowed to come ( personally, that’s a red flag ) and then I go to a meeting a week after where she isn’t allowed to be present. This meeting will literally last all day including breaks. The situation is making me extremely uncomfortable but I can’t tell if it’s because I’m tired, because something is legitimately wrong, or because I feel like I can’t say anything.
Does anyone have any advice? I’m going to be looking into different doctors as much as a can but in the meantime, how do I deal with this??? I know this isn’t the only option, I know I have a choice, and I know I’m not alone with this whole battle, but it feels like I’m losing my mind!!! I knew this was gonna be hard but i didnt expect so many emotions :confused:

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I was thinking about you, but I haven’t made it on here in a while.

Your neuropsychologist appointment is scheduled around the time of your next neurologist appointment because you will hopefully have the results of the tests that were done at your first neurologist appointment, and the neuropsychologist will go over them with you and discuss treatment.

As for meeting with you and your mom separately, think about this like a scientific study: You are two different test subjects with different experiences, reactions, and thoughts. Mom meets with the researcher alone so that she can give her thoughts without worrying about moderating what she has to say because she doesn’t want to hurt the feelings of the child sitting next to her. Maybe it spares his feelings, but it doesn’t give the researcher the true picture from her point of view. Then the kid goes and talks to the researcher without his parent. He can say whatever he thinks, from “Sometimes I swear my mom hates me for being a slob” to “I can’t get anything right! I’m an idiot! I’m a loser! I’ll never amount to anything!” He couldn’t have been that honest with Mom sitting next to him. The first comment would get an immediate “I could NEVER hate you! I love you with all my heart!”. The second would get the usual “You are just different. You are not a loser. Quit saying such awful stuff about yourself.”. Separating out the actual patient gets a report of how things really feel, not just what they look like to an outsider. Staring at a book for hours could be trouble reading the words because a person is dyslexic, trouble concentrating because of environment, or trouble comprehending because the student learns better by hearing the words aloud. The researcher would never know this without the unrestrained “I read things over and over and nothing sinks in!!” from the student. So, it might seem like they are trying to keep things from you, but maybe they are just trying to get the best information. If you are worried about it, ask her if she will tell you what her appointment was like after it happens. That might relieve some of your fears about your appointment. I’m certain that they are not going to create any treatment plan without talking to you and getting your thoughts first. Your mom isn’t going to be making any decisions at that initial appointment. They are probably also going to be talking about the services they can provide, confidentiality agreements, and business stuff like payments. Some of their patients probably can’t handle sitting still that long so they don’t want the kid there until they can focus on them.

I hope this helps. Life is full of emotions and the scary unknown is full of even more. What you feel is anxiety. Just try to relax and don’t worry about it until it comes closer. There is no point in stressing over something that won’t come for a while. Also, just because you and your mom go through those appointments doesn’t mean that you have to go with their treatment plan. Wait to hear what they have to say. You might like it. If you want to pursue something else instead, no one is going to tell you that you have to stick with this neuropsychologist.

–H

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The reason why there are two different meetings one with your mom without you in the room and the other with you in the room without your mom is to ensure that your mom can give information to the proper people without their being a bais from having you in the room but its works the same way when you go in their alone its to ensure that your honest. If you are still nervous you can ask your mom how the conversation went so you can get a general idea. Hope this helps with the advice and the red flag warning you have.
-Camper

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Thanks so much for the replies y’all, and I apologize for the late response :slightly_smiling_face:

@Cubmaster_Heather that helps so much :blush: I guess it’s easy to get carried away when you don’t know what’s going to happen… the research thing makes sense. Biased data is bad data so you would would want to avoid it. I guess I never realized you didn’t have to go with someones treatment plan

@Camper_Ellie yes, it helps a lot! Embarrassingly enough, it never occurred to me that asking my mom what she’s talked about :sweat_smile:

I really appreciate y’all answering me, I’ll give an update at the next appointment :grin:

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( this is a very long post, and i split it into sections that can be hidden so it isn’t an absolute word wall. There’s also a TL:DR at the end )

UPDATE: there was a major schedule change and I got an appointment 2 weeks ahead of time. I had an hour long Autism assessment yesterday and I’ll have an 5 hour long ADHD and LD assessment tomorrow.

I did have a chance to talk with my mom beforehand, she’s promised to tell me everything from the meeting I didn’t attend as well as the results which is a huge relief. Turns out that talking to people actually fixed problems?? :sweat_smile:

The first appointment went ok I guess. We did a couple tests ( boring and illogical ) and some personal assessment ( allowed no room for nuance or explanations ).

specific tests and opinions

The tests we did: ( currently out-of-order )

  • Draw this picture while I switch out what pencil you’re using and later draw it from memory. ( it was a semi-complicated drawing with lots of shapes

  • put metal pieces in a pegboard with your right hand and then your left ( for some reason, this hurt my wrist )

  • tell me what whether this is an up arrow, or a down arrow. Now do it the opposite ( wrong ) way. Now, say it correctly if the arrow is black, and incorrectly if the arrow is white. Do the whole thing again but with circles and squares. ( I hated this one, it was all wrong and nonsensical )

  • if the computer says red, tap the red circle. Don’t tap the yellow one if it says yellow, or the blue one if it says blue. The computer will say a lot of words ( I spaced out on this one and definitely missed a couple towards the end )

  • draw a line putting the numbered circles in order. Now do the same but matching letters before the number: A to 1, then B to 2 etc. ( I have a hard time with letters and was fingerspelling them in ASL. This made her scribble away furiously when I started which I thought was funny )

  • match these 8 cards into 2 groups. Keep going until you run out of categories ( I LOVED this one, categorizing is my absolute favorite!! However, the doctor contradicted herself and interrupted me which was annoying )

  • there were also 2 general self-assessment sheets ( apparently, you have to answer exactly within the options even if it’s ridiculously inaccurate. I had to re-do a couple which I just answered true on regardless of the question )

It wasn’t fun, but it was terrible either. Mostly just draining

I didn’t like the doctor though. She seemed to be gradually getting more annoyed with me and potentially sloppy ( I would do something that wasn’t allowed and she consistently missed it all the first times around ) however I believe this might have been part of the test as I’ve read it’s a common tactic in autism assessments

explaining about the doctor

( this happened at the end of a long day so she might have been tired )

For example: when I was drawing, I erased some of the picture. This made a squeaking sound, and I flinched at the noise audibly saying ouch. No reaction. A few minutes later, I erased at the picture again, this time making sure to stay silent. She then took the pencil and told me no erasing, despite having given me erasable color pencils ( The pencil package was for normal pencils ) and no instructions other then to draw the picture next to me.

She’s also contradicted herself. I was supposed to sort cards until I ran out of categories. Before I could finish, she grabbed the cards and hurriedly put them away. (she knew I wasn’t done because I was supposed to tell her and because I was still going )

When I was doing the personal assessments and asked a clarifying question, she would tell me to just answer the question in an annoyed voice.

When giving me instructions, she would alternate between a cheerful tone, and one that indicated I was causing trouble ( I only followed what she said and barely talked… )

She also explained nothing about what was happening, or why. I was prepared thanks to hours of research, but even then it was disorienting

I’m really hoping tomorrow will be better as I’ll be with a different doctor in the morning then spend the afternoon with the first doctor.

Afterwards, my mom said something that really stuck with me. ( similar to what @Cubmaster_Heather said )
She said I probably won’t like anyone I do the testing with, but that’s ok because it’s just data collection.
i was getting really frustrated at that point and it helped me to calm down significantly. It’s just science, and she’s just doing her job. Even if it seems stupid or pointless, it’s all important information :slightly_smiling_face:

TL:DR/ my mom is awesome, I’m not a fan of testing but I don’t really care, and I don’t think I like the doctor but I’m hoping the doctor I’m seeing tomorrow will be better

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Ok! Yesterday was a very long day ( we left at 7:30 and got home at 8:45… ) so I’ve kinda put off writing this till now.

Basically, I sat in a room with the new doctor who was much nicer and did tons of IQ tests and stuff. She seems very conversational and friendly

After lunch, I talked with the original doctor. I believe her acting annoyed was part of the earlier assessment as she was very sweet this time around. We did a couple things (like making up a story or puzzles) but mostly talked.

When we got home, I was really tired and honestly, kinda apathetic. I’m still recovering but I might add more at a later time

I’m going to put the specific tests under the cut, hopefully someone will find it useful :sweat_smile:

everything I did

Some of these might be missing/out of order, but its as many as I remember

WISC-V ( an IQ test )

  • Use the pictures to figure out what would make the scales balanced
  • Word definitions
  • Finnish the sentence
  • Repeat the numbers, now backwards
  • Remember the order of these pictures
  • Make this shape with these blocks
  • trace the symbol while drawing inside the lines
  • Find the symbol
  • Find and mark out the animals
  • Draw the symbols accurately
  • Pick 3 options to make the shapes in the above picture
  • What’s the difference between insert 2 items here
  • Fill in the numbered boxes with the corresponding symbol

Other

  • Repeat as many words as possible from this list. Which these words were not on the list?
  • Look at these 50 pictures, now pick from these 2 which ones are from earlier?
  • Read these words out-loud
  • Write these words ( a spelling test )
  • On this computer, hit the button if the square is on top, do nothing if it’s on the bottom
  • Do these math problems of varying difficulty
  • Fill in the blank w/ sentences. Or write a sentence based on the prompt (some visual, some spoken)
  • Pronounce these made-up words
  • Read this passage out loud one sentence at a time
  • Write these sentences based off the 3 words-and-picture picture prompts
  • a reading test that basically tested synonyms
  • Reading comprehension test
  • What is this person in the picture thinking and what tells you that?
  • What does this person really mean when they say…
  • Make a commercial from these items.
  • Make a story from these items
  • From this book with no words, tell me what’s happening in the story
  • Put these blocks together into the pattern. If more are needed, ask.

Talking

  • what would you do in this ( awkward ) situation?
  • What makes you feel worried/happy/sad/mad/annoyed etc.
  • do you get along with your family?
  • Tell me about your friends
  • what makes someone a friend vs a fellow classmate?
  • what does it mean to be a friend?
    *if you could have 3 wishes, what would they be?
  • What’s your interest
  • Do you want to get married?
  • what would be hard about it? What would be easy?
  • Do you spend much time on the TV? Give me an estimate
  • Do you think there’s a lot of homework?
  • What’s your easiest and hardest subject?

The next appointment is in December, I’m not allowed to attend ( eyeroll ) however, my parents have agreeded to tell me the results. I don’t know what comes next, but it might be seeing the neurologist for my genetic testing…
Have y’all ever needed to recharge after testing? What did you do?

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