Simon Baron-Cohen can stuff right off

[Jet]

So, I did end up seeing the neuropsychologist and did a best part of a day of testing and I wasn't going to come and bore you all because I have literally no idea what any of it means yet until I have the follow up appointment which ended up being ages out. I spent about and hour and a half talking to the psych and then spent the remainder of the day with someone else who did a bunch of tests.

Between then and now I've convinced myself he's going to come up with that none of it is what I suspect, I'm barking up the wrong tree or some other such outcome....or that I'm just under work stress and that's all it is or something. I'm sure I'm being a bit dramatic, but I've already come up with some plan Bs and excused that it’s ok if I don't agree with this particular bloke. I got an underlying feeling he's a bit old school and not sure either him or his assistant (who did the testing) get 'masking' but I could be being unfair as I wholeheartedly agree some people cannot 'mask' or 'train themselves out of things'...but that doesn't mean there isn't a portion of us who have worked very very hard to do exactly that. I could be jumping to conclusions about them, I just picked up on a couple things that were said that felt dismissive to me.

Anyway....we shall see. I did speak to him a little at the end of the day when I was there but before he had fully consumed any test results or questionnaire responses and things. The only two things he told me was that I don't have dementia (great, I didn't think I did) and that I scored exceptionally high on a logical/analytical test they did :lol:

[Jet]

I do feel a bit dramatic re-reading that but I'll leave (most of) it where it is.

Drumrollllll - I have ADHD Along with anxiety and OCD (the latter, he just says is the same 'family' as anxiety so its all part of it, by his assessment of me anyway).

He did not tell me I was barking up the wrong tree but he definitely doesn't really get into autism, so thats another thing for another day, if I decide to*. He was actually, in quite a sweet way, rather excited to talk to me about my tests. He has informed me I have a some superior intellectual abilities which has caused me both humor and I guess some sort of weird joy today (because a lot lately I don't feel superior at much) - he brought out lots of tests where I scored in very high percentiles, even those adjusted for age (90s, or upper 90s), both in speed an accuracy, often where he said it was rare to see that result. He also said he questioned his assistant on the time I was given on some because he didn't believe it :lol: In particular it was more the visual perception stuff, visual and shape or pattern based tests. I could bore about them in more detail because I find it all quite fascinating but I won't go on. He also wouldn't let me write notes while we talked today so I felt a bit frustrated at having to rely on my memory of what he said. I know I will get a report, but I may also ask them for the actual tests.

The straight ADHD test shot out the ADHD inattentive type, but he showed me other cognitive tests that also supported the theory, even some that gave some interesting insights into the workings of my brain (including the speed of information coming to me impacting my ability to function at the best level). He did also note that sometimes my speed (too fast) impacted my results.

So that's that. I don't see my regular doctor again for a couple more weeks then we'll talk about medication. I will definitely pursue ADHD meds, but I need to talk about whether to do something for anxiety or just try one at a time. I think I'd rather try ADHD only first and see if it helps with the anxiety more longer term. But I don't really know what I'm talking about.



*what difference does it make? I feel like it makes a difference to me, but in practice, life, other stuff, I guess it doesn't really. I still just think I'd rather someone just tell me yes or no on that front. 'It's all just ADHD' is an ok answer too, but I was hoping someone would actually say that and I'm not sure anyone will.

[Cosmopolitan]

If it helps, my adhd meds have pretty much resolved all my anxiety. It's much easier to be less anxious when you can understand why your brain is behaving in certain ways. And adhd meds help with the emotional dysregulation and rsd (if you have rsd)

[Jet]

That's helpful, thanks. I was thinking that would be the best thing to test first before. And I definitely have rsd.

[Cosmopolitan]

I found the whole testing process and the lead up to diagnosis exceptionally stressful. Hopefully you can relax a bit now.

[Cerise]

Right, I’m starting drugs today. Wish me luck!

[Cosmopolitan]

Best of luck. The first few days feel incredible and then it all evens out. I've just increased my dose and feel better again.

[Jet]

Good luck cerise!

[Smunder Woman]

Good luck!

[Cerise]

So I definitely felt a bit “whizzy” but it did not turn me into superwoman. :))

A low dose at the moment so we’ll see. I haven’t crashed which is something I was worried about.

[Jet]

How is it going Cerise?

I finally had all the right conversations and the last one with the person who can/will prescribe medication and she was sending in something that sounded good all round for me and turns out its really expensive so I need another option*. I'm probably unreasonably upset about it because I'd read up on it, got comfortable with it and now I can't have it so I'm being doomier than I should - I really struggle sometimes with making peace with a new scary thing then it changing on me and I deal must less well with the change than the initial new thing. She's calling me in something else but its something noted to usually have worse side effects, lasts for less time (even as a slow release) and also may make anxiety worse which I do not need. I am going to suck it up and give it a shot but I feel much less chill about this than the other.

I have some prominent me in the spotlight stuff happening with work early next week (two days of all day strategic planning which I'm leading with people flying in from all over...some of whom I have never met in person) so I will probably not even try it until after that because I expect the first few days will be weird and that probably wouldn't be the best test :lol:

*I'm most annoyed at the why is that here sometimes there isn't a generic version of a branded medication and then insurance covers it....great. But sometimes when a generic comes out for the first time its at first stupidly expensive and insurance will no longer cover the brand because the generic exists. Its that scenario here and I feel very put out about it because its purely stupid timing that is impacting the meds I can have.

[Cerise]

Jury is out at the moment. I can tell that I’ve taken something and I would say that my head is a bit calmer but I feel weird and lacking any drive. I have a call to discuss it this morning.

So annoying about the problem with your prescription! I also chose to start when it wasn’t a work day, just in case.

[Little My]

Jet, that is frustrating. I'm sure your doctor is on it, but is there any possibility of getting a card from the manufacturer so you can 'upgrade' to their brand at the cost of the generic version? That's what I used to have for R. (She took Concerta.) I initially got the card from her doctor.

[Jet]

I did check Goodrx but there wasn’t much option there, some pharmacies did have a coupon but it was still pretty high and it was chain pharmacies which we tend to have issues with even filling these medicines so we usually have to use grocery store pharmacies.

I will suck it up and try the replacement (adderall) and see how it goes and maybe keep an eye on price of vyvanse in case it comes down later. I have a friend who didn’t get on with adderall so I’m just hoping I get on better with it.

[Little My]

Fingers crossed. I don't have experience of Adderall. B takes Vyvanse and we don't seem to have a generic alternative here, so that's actually really surprising me. (Move to Canada? ;) )

[Jet]

I think it’s really new. On my way :lol:

How does B like it? My prescriber really sold it to me which added to my disappointment.

[Little My]

I ended up down a rabbit hole reading about the generic form, which apparently we DO have over here now or at least in some provinces. So basically I should watch out in case the pharmacy does a sneaky shift because they look almost identical.

B seems OK on it. He has very few side effects (that I am able to discern), but the main issue is that it suppresses his appetite a bit so we have to make sure he eats enough. Not surprising as it was initially meant to be medication to treat binge eating. It took a couple of weeks to kick in, but really addressed his main issue of not being able to sit down and pay attention. It definitely evens out his hyperactivity, as I see a difference when he takes a break. We recently upped his dosage, but the doctor said he should stick to his original (half) dosage at weekends. I'm not convinced this is a good call.

[Jet]

Yes the binge eating thing was mentioned to me too with the weight loss potential (not a terrible outcome for me although I’m not trying to lose weight).

Do you think the half dose on the weekend is not enough?

S never takes meds on the weekend and generally manages a half dose during the week whereas L needs everything he gets during the week and we’re sporadic with nothing at all during the weekend - usually he does something one day (half his or one of S’ lower dose) and maybe nothing the other but it takes some planning, prep and expectation setting to skip for him.

[Little My]

I just worry that switching the dosage up and down makes it hard to regulate how he feels and responds. That is possibly irrational, however.

[Jet]

Ah ok. Well if it helps S started swallowing pills for the first time (yay but normally I split the pill (so he takes 7.5 instead of 15) and he was taking it in pudding) and while I waited for some empty pill casings he’s taken a full pill a couple times this week and the most he noted was one day his stomach felt a bit weird. He also goes from his half dose to none on the weekend without much issue.

But obviously I realise it depends on the person. L takes 20mg with a 5mg at lunch at school and a weekend day with no meds is very notable - and we wouldn’t do it if we were doing anything other than being at home but he also sometimes just takes 10-15 instead and seems to do ok.