u/picklethefreak

hi all,

I just had a neuropsychological evaluation to investigate the nature and severity of my self-reported cognitive dysfunction, which is part of my disability claim. My main problems are feeling like it's been really difficult to learn/retain new concepts, focus, self-direct my work, and follow procedures consistently. After getting long covid in 2024 there's also a very specific symptom related to brain fog that I don't think the eval would capture since it's usually delayed.

I have autism level 1, ADHD, long covid, panic disorder/agoraphobia, OCD, PTSD, and difficulties with complex noise. I also recently received a diagnosis of undifferentiated connective tissue disease with lupus-like features and had been concerned about potential impact on cognition.

I actually did extremely well on my eval. My neuropsychologist said I scored 99th+ percentile in most tests with exceptional scores in verbal processing. This was very surprising to me to hear. I was hoping for some answers about my cognitive dysfunction, and after sleeping on it, I'm even a little worried it could look like I'm falsifying cognitive dysfunction. This is ongoing cognitive dysfunction that has cost me a very high paying job and multiple job opportunities.

My neuropsychologist thinks the cognitive dysfunction is not from illness and is likely from ADHD, stress intolerance/emotional problems, and dysautonomia (which impacts blood flow to brain). He even started discussing implementing work accommodations and I began to panic because I've had many of the accommodations he mentioned, and nothing has really helped me succeed at work.

In this scenario, what is the most useful medical documentation to prove I'm not making my difficulties up? Is there a type of neuropsychological eval where they can recreate work-like conditions and stressors? Would having testimony from past employers help me more now? have you dealt with a similar situation?

edit to say - I have very limiting physical conditions which are well documented, but I am 29, and highly educated. I'm worried this eval will make me look more cognitively capable than I am in a real-world setting with ongoing stressors and complex noise. so this is about trying to match my claim with the legal matrix

Hi all,

I may just be impatient, but I learned from DDS that my examiner has only contacted my two mental therapists and my psychiatrist. I am applying for SSDI and SSI for both mental health and physical health impairments. My limitations in both areas are equal. In my SSA application I included every treating source I am seeing.

Is it normal for DDS to only contact mental health providers? Do they just contact as many providers as they can in a set time period, and I should expect my physicians treating my physical conditions to be contacted next?

Thank you for your experiences with this.

hi all - I am not seeking HCQ experiences btw, I can see the frequently asked question disclaimer as I write this. I am writing to ask about medications for dysautonomia for those dx'd with lupus or lupus-like UCTD.

I've been advised by my rheum + cardiologist to stop ivabradine (brand name Corlanor) so I can start hcq. I've seen a couple people in this sub take both and their care team is fine with it but mine is not and I'm a Medicaid patient so a bit stuck here.

I've failed beta blockers and cannot swallow pills (the largest pill I can reliably swallow now is half an ivabradine tablet, very very small, it's taken months to be able to do this). Medicaid formulary doesn't cover every med but I'm p good at navigating the prior auth process generally.

Couple questions:

- has hcq improved your dysautonomia on its own? I'm not expecting it to, but I believe my autonomic dysfunction is mediated thru my lupus-like tissue disorder (positive anti-Smith but only meet like 9/10 criteria right now and I am rheum-diagnosed with UCTD), so worth asking

- if you are also a dysautonomia patient, and take hcq, do you have a non-beta blocker medication that helps with tachycardia and presyncopal episodes that you like and your care team is okay with? my cardiologist has recommended midodrine and then my end of road option would be pyridostigmine but I'm not happy about either as ivabradine has really helped me

thank you!

ps I am neurodivergent so if this gets removed by mods kind feedback about why, in a direct message, is most helpful to me.

pps due to the anti-Smith and my presentation I disagree with my rheum and believe it to be SLE which is why I posted here and not the UCTD sub

I added a flair for this as support so maybe just seeking kind words!

I have been on ivabradine since September 2025. It has helped so much with my tachycardia and pre-syncopal episode frequency and severity.

I also have had unusual positive side effects from ivabradine I've discussed with all my care team as well as multiple pharmacists - when I started taking it, I had a rapid reduction in persistent mental health symptoms, such as intense relational paranoia, delusional beliefs, magical thinking, and conspiracy theory seeking. I transformed into a much more emotionally stable person, and I don't just think it's from lowered anxiety. Basically this happened overnight. A few days at most. It didn't happen on propranolol (which I failed), so I don't think it's just lowered heart rate.

I was recently diagnosed with a lupus-like connective tissue disease and have to start Plaquenil. My rheum and cardiologist both aren't okay with Plaquenil + ivabradine. It looks like I will be trying midodrine or pyridostigmine next.

I'm feeling really sad and scared that my mental health will go back to being the way it was before ivabradine. I started dating again this year after honestly, being a really difficult person to date and be in relationships with. It's really hard when your reality is not the reality most people live in. I am applying for SSI and SSDI so being more psychiatrically disabled as per (my) usual might help there.

idk how to end this here but just really, really sad. Having a bit of a flowers for Algernon moment

Does anyone else get a 40+ bpm increase just when rolling over in bed/sitting up in bed upon waking? This is a new-ish symptom so I plan on reporting to PCP/cardiologist but I've been a bit surprised by this given I've been taking my ivabradine at night and generally my largest spikes are now controlled to unmedicated/standing up in the morning/extreme triggers. I haven't been feeling more poorly than my normal.

I am on Aged, Blind, Disabled (ABD) assistance from WA state. I was just reviewing my SSA portal as well as ABD legislation and saw that ABD approval is based on a similar legal grid as SSA and they consider whether you'd be likely to be approved for SSI/SSDI. I was approved pretty quickly for ABD in Feb/March/April this year. I'm turning 29 this month and am highly educated so not expecting to be approved by SSA this first time but also would like to be more realistic than pessimistic/optimistic.

I listed my ABD contact and my DSHS client ID/claim number in my SSDI application but I was just wondering if the SSA will actually consider my ABD approval and if they will contact my DSHS contact. Different can of worms entirely but I have called my DSHS ABD contact twice since being approved and haven't heard anything from her so this might be a question for my local CSO.

Thoughts/experiences very welcome! If you have advice for specific support I should be requesting from my DSHS contact please let me know - I usually have to go irl to get help.

hi all! I started an application on May 4th and just logged back in to my SSA account only to see that it was marked as submitted and in step 2 of review. There is no option to return to saved applications. Is this something I should have expected? I did not complete or submit the application and honestly most of it was blank, including anything regarding why I'm applying, or my doctors' contact info. What would be the next best thing to do? Should I call SSA or go to the local field office?

I just got my UCTD dx and I'm feeling very drained. It was not an overly long process, but it was very frustrating. I still feel that my diagnosis is conservative, as I have a positive ANA (1:1260) and anti-Smi, which I think should put me on the side of SLE. I have fewer symptoms at this time in my life so I think that's why the rheum is erring UCTD rather than SLE. I have had more symptoms at other times. I'm just ready to start Plaquenil. There was no time for patient education so I actually don't know what I'm supposed to do other than what I've read online.

Questions in no particular order:

1. I might be fishing for validation on my opinion that UCTD is overly conservative. But I appreciate push back if it's not. Do any of you have positive anti-Sm and still not dx SLE?
2. Do I have to start wearing sun protection more frequently with UCTD? do you have favorite affordable brands of UPF clothing? (I'll forget sunscreen)
3. Can Plaquenil improve fatigue?
4. Can Plaquenil improve cognition? (fatigue and cognitive issues are my biggest concerns as they impact my ability to work)
5. Is there anything else you think I should know right off of diagnosis?

hello! this is U.S. based for context!

I've noticed my sensory sensitivity is like, 50x time worse this year. I am 28, almost 29. It is becoming very difficult to go into the grocery store (other stores too, but I don't shop much) because of all the sounds and lights. I have long covid and suspected systemic lupus and it's hard to tell where there is crossover. Also, complex noise, or multiple competing sounds in one environment, are becoming increasingly physically painful. I have to be in many noisy environments to obtain services (like DSHS, the SSA, etc). Sometimes it takes multiple attempts to go do what I need to do because I might have a panic attack or meltdown due to the sensory stuff.

it's beginning to feel like I am hard of hearing. I hear perfectly fine, probably too well, but when there is complex noise, I feel so frustrated and physically sick, and I can't understand what people are saying. It helps to see lips. Do any of you use assistive tech on iOS or with an external device?

I've been trying to find an occupational therapist experienced in autistic adults but it's been really hard to do that with Medicaid (limited options). I have an OT for other stuff. So it feels like I have to do a lot of self-help.

I'm feeling a little nervous that sensory sensitivity will just keep getting worse as I age. It might be comforting to hear from older autistics and also to hear what you've tried to self-support with.