u/Sayurisaki

I’m trying to get a formal diagnosis so I can get support via NDIS (and hopefully Centrelink eventually). I have a very long report from my psychologist who wrote she provisionally diagnosed me with ASD level 2 and moderate inattentive ADHD, pending a psychiatrist’s review.

I have spent literally months trying to find a psychiatrist. Every doctor, LAC, autism support group person, everyone, is confused as to why I can’t get accepted as a patient. I have been rejected by about 5 psychiatrists so far, with none giving any reason. And every time I get rejected, I have to go back to my GP to have the referral sent elsewhere and then wait like 2 weeks before the new practice’s set of psychiatrists bother to review if they want to take me on.

I contacted an autism support organisation, maybe Autism Connect, I can’t remember which one. She was very lovely and said I didn’t need a psychiatrist for the ASD diagnosis - my psychologist should be able to do that or a clinical psychologist. I then called the LAC company and they checked with their supervisor and confirmed that a psychologist or clinical psychologist can formally diagnose ASD, just not ADHD.

I literally don’t care about the ADHD half right now. I was seeing a psychiatrist for a year who never gave me anything in writing and was a dick about it when I tried to get it in writing, but I had many side effects to stimulants and I just have too much else to try and sort out before trying to figure out the ADHD (I’ve recently been diagnosed with MCAS so that’s a whole massive thing of trialling new meds for months). So my primary goal right now is a formal diagnosis of ASD level 2 instead of just provisional.

Does anyone here have any experience with getting NDIS approved via a psychologist or clinical psychologist diagnosis, rather than a psychiatrist diagnosis? I am desperate for support, I am not coping with life, but so far all I’ve got from months of calling any service possible is a little bit of counselling for being in a carer role at times for my partner. I’m almost at the point of giving up and just dealing with being a burden to everyone around me forever because finding support beyond my family is impossible.

I’ve got the DuckDuckGo app for iPhone, but I’d really prefer to use noai.duckduckgo.com as my default search engine. However, there only seems to be the basic option of DuckDuckGo as my search engine as I can’t type in an address.

Is there anyway around this, or do I need to type in noai.DuckDuckGo.com to search from there?

I’m new to the MCAS world but not new to chronic illness. When I was in my late teens, I was on a gluten free diet and it made me so depressed. In my mid 20s, I tried a high protein low carb diet with my partner and oh boy, it was horrible - immediately angry and shaky like I hadn’t eaten. So I’m kind of dreading the idea of changing up my diet, as I’m also autistic and have sensory issues about texture and resistance to change.

Is a histamine diet worth it for all of us, or mainly those who have GI presentations? Mine is mainly a neuro presentation - brain fog, fatigue, sinus/Eustachian tube dysfunction/puffy head type feelings. I’ve had bouts of GI issues or skin reactions over the years, but not in the past 5 years. I’ve recently started famotidine which had enough effect on my mental clarity to convince me it’s MCAS.

I’ve had allergy testing done several times over the years and I’m positive to nickel, aluminium and latex, but nothing food related. I’m dreading the idea of the MCAS diet because I rely a lot on convenience foods due to fatigue and my autism safe foods for proper meals are mostly pasta, thus tomato based. I also hate most fruit except for strawberries and bananas.

So I guess I’m just wondering if it’s worth the struggle to figure out how to meet my dietary requirements considering my already existing limited palate, or if I should just continue the medication trials for now and maybe look at it at a later date if at all? I’m assuming reducing histamine load would be beneficial even if you don’t have GI symptoms but low key hoping that’s not the case!

I’ve been recently diagnosed with MCAS. I also have ME/CFS, POTS, autism level 2, inattentive ADHD and likely a connective tissue disorder.

My health and functionality has deteriorated over the last 6 months. I overdid it at Christmas and haven’t been the same since. I believe trialling stimulants for ADHD over the course of 2025 just fully messed me up due to comorbidities and I stopped them in February.

The past 6 months has just been me barely starting to improve and another thing knocking me back, like my partner relapsing briefly or us all getting viral illness. I got a viral illness at the end of march and was proper sick for 4 weeks, followed by a week of needing a steroid/bronchodilator inhaler for a cough. That sickness has really messed up my ability to trial antihistamines accurately, but I’ve tried a few H1s and decided loratidine is best.

I ran out of loratidine and used fexofenadine for a few days and seemed to get worse. On Monday, I had EMDR with my GP (cut short by me crying so much over a particularly difficult issue) and started back on loratadine, as well as starting famotidine. Within half an hour or having loratadine and famotidine, I was like holy shit, my head is clear and I definitely do have MCAS!

I tried to still take it slowly despite feeling a bit better, but I did have to take my kid to school on Wed and Thurs which is a lot physically for me. Both days, I started feeling really sleepy and heavy eyes from about midday. But on Friday, I noticed the same thing occurring but also more allergy/sinus/head symptoms and that is now most of the day since yesterday. My face and occiput and Eustachian tubes feel puffy, and my left eye feels off (lid might be slightly swollen, I’ve had a carotid dissection that I think messed up the nerve going to that eye).

On Friday, taking famotidine early helped so much. But yesterday it didn’t do a thing. Today, the symptoms weren’t really there on waking but have gotten progressively worse over the day.

I just don’t know what else to do. I’m on bisolvan ever since getting sick to avoid Eustachian tube dysfunction, Ioratadine 10mg twice a day (3 times yesterday which didn’t help), famotidine 20mg twice a day, aspirin (was on it before MCAS dx because of dissection risk). My inhaler and steroid/antihistamine nasal spray aren’t helping (tried them yesterday).

I just don’t understand why famotidine seemed to help so much initially and now I seem worse. I feel like I probably overdid it slightly when I was improving, but usually my crash symptoms aren’t so allergy/sinus like and are more fatigue/weak or heavy feeling/brain fog/POTS flare.

Sorry that was so long-winded, I’m having a hard time thinking straight and I’m finding it hard not being able to understand why this change has happened.

I’m on loratadine 10mg twice a day and have just started famotidine 20mg. My MCAS doctor said twice a day and the booklet she gave me says twice a day, but the script she gave me says once a day.

I saw some mild improvement with loratadine, similar to desloratadine and bilastine I think but fexofenadine is useless to me. But the night I started famotidine, it made such a difference to my mental clarity that I’m now sure I have MCAS.

I feel like I’ve read on here that most people take it twice a day but I’m not sure. Also is loratadine usually twice a day? It’s confusing because the doses I see for MCAS are often more than what’s on the box. I’m still early in my MCAS journey so I also haven’t tried much yet.