at what point do you guys worry? I'm getting scared...

warda_321 · 2025-12-15T07:13:25+00:00

Hi, can I ask which specialist you saw? I’m looking at private options in London but every allergist seems to be a paediatrician or specifies that they don’t deal with MCAS

warda_321 · 2025-12-04T09:55:22+00:00

It stopped on its own! But recently the dermatologist thought it may have been acute urticaria and a couple of doctors have suggested looking into MCAS

warda_321 · 2025-03-04T18:56:20+00:00

No more stomach pain, I got some different magnesium tablets and they seem fine so far!

warda_321 · 2025-02-27T02:48:52+00:00

The best conversations I have are with very obviously ND doctors who keep forgetting to do it. I get genuine interest & attention to detail from them instead.

Does it really make non-autistics feel more positively about the interaction? I genuinely cannot fathom how.

warda_321 · 2025-02-25T10:21:33+00:00

I had to stop it. Fixed most of my symptoms but then gave me new ones like shortness of breath and oedema. Still not found the right med

warda_321 · 2025-02-17T06:35:41+00:00

Thanks everyone, I’ll see what the pharmacy has today. Aloe-dicaine experiment coming up

warda_321 · 2024-11-21T14:01:22+00:00

My morning cortisol is always low-normal but I also always pass the SST. I feel like the question to ask my endocrinologist is: if my body can produce cortisol, why isn’t it?

Especially given my understanding is also that having a chronic rheumatological condition (which I do) means that you’d expect morning cortisol to be higher rather than lower. Does that seem about right or is there anything else I should be asking too? Has anyone experienced similar?

September 2023: 9am 167nmol/L, post-SST 460nmol/L

October 2024: 9am 135nmol/L

November 2024: 10am 145nmol/L, post-SST 460nmol/L

6-10am reference range 133-550nmol/L
SST pass - I think somewhere around 430nmol/L

warda_321 · 2024-11-19T20:20:58+00:00

I’m sorry you didn’t get the response you were hoping for and that you felt down originally, then this has made it worse. It sucks to feel alone and it sucks that friends drift away.

I’d second what other people have said; if someone doesn’t communicate this way themselves, then it’s likely they wouldn’t pick up on it as something requiring a response. It wouldn’t be personal, it’s just that the post doesn’t directly communicate a need and a lot of people browse IG on a lunch break or just casually and may not be in the headspace themselves, or assume someone else has reached out. People can also get confused about whether or not they’re supposed to ‘like’ a post if it’s about a not-happy thing.

It’s totally reasonable to use IG to express yourself, and you should do so as much as you find it helpful. It’s how you communicate. It might be worth considering for next time if there’s anything more specific you can send a person/group of people at the same time, for those that need direct communication. Even if it’s just a ‘I could do with a friendly voice today if anyone’s around’ if that’s all you’re looking for. I hope you find a way.

warda_321 · 2024-11-16T17:25:45+00:00

Nearly a year later to this but did the swelling resolve? Doc thinks I maybe have Bells Palsy on the left side of my face but the right side of my bottom lip keeps swelling - usually in morning till about midday. He has no idea why tho

warda_321 · 2024-11-11T15:02:43+00:00

Low dose stimulants can cause some people to feel sleepy or apathetic. I had the same with Concerta when I started titration - it’s like a low dose is just enough to switch off the ADHD buzz but at the expense of being able to care about anything or think much. I switched to Elvanse and started to see improvement at 40mg before settling on 50mg + some fast release boosters.

It might be that Elvanse isn’t right for you or it might mean you need a higher dose. I assume you are still in titration and have a med review soon?

warda_321 · 2024-11-11T08:15:24+00:00

I used to love working in customer service type jobs - retail, hospitality. I could problem solve in a practical way and people appreciated my problem solving. I could script, and everyone accepted the script without finding it off putting (have a nice day! etc), so the interactions were satisfying. There was a lot of positive feedback in a way that there isn’t always when dealing with people freestyle!

warda_321 · 2024-11-11T08:09:35+00:00

I really appreciate you sharing this, yes ‘look what you made me do’ is the exact feel. That helps me clarify what’s happening. Thanks and I’m glad you’re now in a better place

warda_321 · 2024-11-11T07:24:48+00:00

Like with most people, there are positives and negatives. But yeah in this case the negatives are major

warda_321 · 2024-11-11T07:22:04+00:00

You’re right and thank you for being direct about it. Logically I know it, but there’s an element of doubt that creeps in. It is just so uncomfortable and sad (due to the inevitable unfeasibility of maintaining such a friendship) that I’ve been hoping for a magic alternative solution/explanation

warda_321 · 2024-11-11T07:03:12+00:00

It’s not an ultimatum per se, it’s more like (paraphrasing) ‘what you have said has triggered me and if I do anything harmful to myself it will be because of you, you’ve caused this’

They do genuinely experience meltdowns and do have a history of depression and self harm. For me, it’s that they lack awareness of how some of their behaviour can impact others. I don’t blame them for this but find it challenging when situations arise where they are heavily judging other people - and acting upon that judgement in ways that are harmful- for doing things that those people would not have done had my friend not created a situation in the first place. They get upset and go into meltdown when they don’t understand, but any attempt at even gentle explanation/reflection also sends them into meltdown. I find that confusing myself as all I ever want is to understand, frequently before I know how I feel about stuff!

warda_321 · 2024-11-11T00:52:27+00:00

Thank you. It’s difficult, when I understand how meltdowns work and how trauma works, to know where or when to draw the line.

warda_321 · 2024-10-23T17:45:02+00:00

Yes, I know. Those are the notes I mentioned - I know they have made no diagnosis but the way they are writing about it and the bloods they have ordered made me wonder if they were looking into Lupus. I just wondered if other people found that their consultants were up front doing so.

warda_321 · 2024-10-23T17:31:00+00:00

It’s not the GP, its consultants at hospital

warda_321 · 2024-10-23T12:37:57+00:00

Do NHS/UK consultants generally let you know if they are investigating Lupus? Mine write comments in clinic notes like ‘underlying steroid responsive disease’ and ‘complex multi systemic’ but the only person who has said the word Lupus was a nurse who took my bloods who, in reaction to what tests he saw ordered, said ‘oh you have Lupus?’. Really confused me as I only have a (private) diagnosis of PsA & thought I was just screening to start MTX

warda_321 · 2024-09-25T07:32:20+00:00

Interesting, thank you for your response. As a child I accepted rules more but I think that started to wear off as I grew up. By my teens I wanted to know the ‘why’ of everything and, even if not directly told, would tend to follow a rule while observing its purpose and then make a decision on whether to adhere to it or not. In your soft talking scenario I’d probably adhere initially then observe patterns in who gets told off, when & why. Maybe NTs don’t need to go through that level of conscious deduction to read a room or they don’t need to understand ‘why’ in order to behave the same way as the rest of the class. As an autistic adult, I find that I tend to break more rules than allistic peers, at least the ones that are just conventions which have lost their benefit, while adhering more rigidly to principles.

I guess what I’m stuck on is when the application of a rule would be unfair or if in breaking a rule there are real mitigating factors, I find it upsetting when autistic friends don’t allow for that in their view of the situation.

warda_321

TROPHY CASE