Self Diagnosis vs Professional

Hi everyone,

Being new here, I'm quite surprised as to how many of you guys are self diagnosed.

It makes me wonder whether I shoud have done the same:

My route to diagnosis was started by the psychologist I see for my arthrits.

He brought it up in conversation one day and suggested I contact a colleague of his who could formally diagnose.

I would add that I suppose I self diagnosed myself as "very "quirky indeed" as a teenager.

Many other non qualified colleagues, acquaintances, and family members offered their own diagnosis over the years.

I'd never say to someone..."I reckon you've got Asperger's, mate"....Is that not a bit forward/rude?

Anyway, I saw specialists for ADHD and ASD. 

For ADHD, I scored 9/9 for combined type and, athough my ASD1 report is not in yet, the psychologist told me it was crystal clear I had what was previoulsy referred to as Asperger Syndrome after less than 1 hour.

I think I am one of those people who only listens to, or even trusts, specialists:

The problem with that is you either end up on waiting lists for ages or pay huge private fees, or both.

What do you guys think?

  • It's great therapy though

    Absolutely! A big de-stresser and at its best playing connects me to something bigger... dunno what I'm not religious and the moments are rare and fleeting but occasionally I just get in the zone and everything just flows.

    I have back problems too, I'm hypermobile and so am always putting my back or right hip out, for the last 2 years I havent been able to gig through it. I have a bass an old Honer P-Bass copy from the 70s great guitar but I can only play it sitting down as its sooo heavy! I'm not great with computers either so I've not got into PC based home recording, I had a porta studio back in the late 80s but thats about it.

  • I do - bass.

    I have nerve damage in the right hand and slipped discs in the neck ( not the bass, me), so it's not without it's challenges.

    I get aroud it by using really light carbon fibre guitar and very thin picks.

    Light gague strings help and I get all the bottom end I need from the amp.

    I have a lot of home recording software, but belong to the less computer friendly generation.

    It's great therapy though

  • People tell me I'm good but I cheat a lot. My picking technique is sadly lacking as my co-ordination is a bit rubbish (probably an Aspie thing again) so Yngwiddle is a bit beyond me. Hence I'm more legato so I'm kinda Poundshop EVH on a good day, uncoordinated Brian May on a bad one maybe.  Music For The Mind do you play at all?

  • This place is probably good for venting, so I wouldn't worry about ranting 

  • Thank you.

    I apologise  for ranting but it happens, life just gets complex sometimes, 

    I will bounce back, that is always a given,,,,,,well so far I have..,,,thanks to the May ears that listen on here and do there best to support. 

  • Yeh....That sounds like a lumbar bulge alright - It's crazy how much the back can hurt, however it's logically explained. The sciatic nerve root is as big as your thumb: Compromise that and....BOOM.

    If they injected your back in hozzy, it was either a steroid into the epidural cavity or a stonking great dose of local Difene...an anti-inflammatory.

    All you really need to watch out for is that it doesn't degenerate: Your right in requesting an MRI, as this would reveal if the bulge had grow, but you'd have to pay to get this done. Explore an epidural - It'd be an investment in your health

  • The people on this open forum understand much, they do not judge, I understand much of their issues, I don’t always come up with answers but I do whatever I can with what I have to give.

    They do the same for me, I am so grateful for their help. 

    I wish I could do more for each and every one of you. Sadly I am but me.

    I have tried being me elsewhere, it annoys,causes pain and I am only needed for what they want not what I need. Hence why my real thoughts are kept firmly in the box, 

    thank you for understanding though, you have helped me in the past, I hope one day to repay that.

  • Thank you for listening and understanding. They take me for a fool the doctors, I am no fool, I research very thoroughly, I control my body, I understand everything that is going on in minute detail,

    It is the overburdened system that is denied the funds and support it needs, The doctors do as much as they can with what they have. It is not their choice it is a fact they some how have to deal with. They have limited resources and must make life changing decisions daily.

    I can still walk, I get by, I am being sincere when I say you deserve the resources more than I do, only as in this less than perfect world it the right thing.

    I understand their job, how they keep going I do not know, they are amazing to keep going.

    I am so sorry you have to cope with such pain and really feel for you. I had a short sharp reality check, my pain was intense, it destroyed my mind as suddenly I was no longer able to function. I have days I feel intense pain. So I take more pills, I hate them but as said if it works then so be it.

    Thank you for the advice regarding the L5/S1 bulge, I shall discuss it when I see my GP next, I have now something to research, When I first attended the clinic after the initial problem, I was in so much pain they had to inject my back, it took a long time to take effect, I was asked if I could put my shoes on in the waiting room as the room was needed, I cried out and slid off the bed, I stumbled out into the waiting room, my wife went in got my shoes and put them in for me, I spent four weeks propped up on a sofa, side on, each part of my torso had to be supported to keep it straight to stop the pain. Pillows to stop my body twisting as my arm was trying to pull it to the side.

    Thsnk you,and I wish you well,

  • This place is my ears, sorry I have no one to share my frustrations with, 

    :( .....but I bet there are also people here in that same boat...life can give us a lot to navigate with only a half scrawled map to follow

  • The same was said to me and it is true.

    Surgeons only operate on the manifestations of symptoms.

    I've had as many open spinal surgeries as surgeons will perform and have a genetic condition where the discs crumble. I wanted to get regular MRIs to be proactive, but tat's not how it works.

    From what you say, you most likely have an L5/S1 bulge. This can be treated with an epidural injection of hydrocortisone: The steroid will shrivel the bulge. Explore it with your GP before it gets worse. Oral painkillers will provide short term relief, but eventually your disc annula may rupture, leading to a herniaton.

    I have 8 herniations and live on an invalidity pension and morphine. 

  • Correct.

    How are you on the guitar?

    The opening bars of Smoke On The Water or Yngwie on a good day?

  • Hi sorry for my rants, I have good days and bad,today is a bad day,

    my back pain is work related meaning I was shivering tons of wet concrete, I had to be off work for five weeks, unable to even sit up,

    The official diagnosis is???? We did an X-ray and couldn’t see anything! So being given the old story, take these tablets and it will ease the pain. 

    I afgued I needed a scan, the reply says it all “ we do not like to do a scan as it may show up something other than what we are looking for”.

    sounds unreal but the actual words. I said how long must I take these tsb,ets? “ as long as you need to,” was the reply. so I argue it will just hide the pain and it will get worse, reply was “ if it allows you to continue your life then this is the right way forward” .

    I tale codiene supposedly I can take eight a day. I also take naproxen potentially two a day.

    Niether should be taken long term, the codiene is to make my body produce morphine,it doesn’t contain it.

    as I am aware I gradually took less until now I take only two. The pain varies, I do not want to become addicted to it. My body is getting used to them and therefore the dosage will be increased.

    I have researched the drugs as I do with everything in my life.

    One side effect of long term use of codiene not stated is that it can reduce magnesium in the body, so now I take a supplement to help. I was getting severe muscle and joint pain due to low magnesium levels, the pain stopped the very next day.

    So I imagine I have damage to a disk, I already had sciatica before that which adds to the pain. No meds for that I was told to swim more.

    Jeez I do go on. This place is my ears, sorry I have no one to share my frustrations with, 

  • From approaching my GP to getting the diagnosis letter through in the post it took 14 months for me via the NHS. The wait was sometimes difficult particularly as my mum died during that time! I managed to find a private therapist who has experience in ASD 6 months ago and that helped me get through the wait, but I appreciate not everyone is lucky enough to afford that. 

  • What is your back condition?

  • Thank you,yes I fear not being understood, I am guilty of being able to cope, my mask fits too well, I come across as being ok, I am very good at adjusting, it doesn’t mean I am ok, it wears me out. Mentally and physically. I have chronic back pain,on meds for three years now, In effect instead of presenting my coping self I will have to battle to not cope.?? I hope they have lots of tissues handy, 

  • Agreed - That's why I went private, but each to their own.

  • Hi Music for the Mind!

    I think self diagnosis is used to give an answer amidst all the confusion, but it can be very dangerous. An official diagnosis is the best way forward, because you get the support and advice of services. That's my view, anyways!x

    Much love <3

  • Nice reply, thanks.

    A 2 year wait is long though - You did well to last that long - Others would have despaired

  • I went private - The local NHS waiting list is 1 year +

    1500 quid? No way...That seems a lot to me.

    I paid 500 for the private diagnostic interview alone and that was without a referral from my GP.

    There is a presentation online about getting an adult ASD diagnosis, but it's against forum rules to identify anyone, so I can't post it.

    Just look around though, it's not hard to find.

    I was sooooo stressed about my interview, so I know how you feel. It's not fear of failure you have, it's fear of not being understood - Of having to plead your case as it were: I'm used to that due to my chronic pain....That's relatively invisible, too.

    Tell you what though, all you have to do is be yourself and they'll pick it up instantly. 

  • Hi tom, I need the I need that validation too, I tried to be the real me at work and at home, 

    all it did was upset and cause problems at work, I got all the usual things that are said” oh I get like that” or “ just stop researching it then” my boss said “ well get the diagnosis and you can start being normal again! We can see you are struggling! But if you do then try and make a double appointment either first thing or last thing so it doesn’t loose you money!”   More like it will interfere with work. I am a junior manager, I have allocated jobs which means I am needed to do admin, do health and safety etc, so days off are difficult to cover,

    I decided to put me back in his box, he isn’t happy but it saves him from being pushed around and not understood, So here I am on behalf of myself, coping,changing, saying what he thinks, acting his part for him, at work I shape shift to fit whatever the need,

    Everyone said “ good for you mate,all that was doing your head in,better go just forget about it!”    Cheeers all, I apologise for letting the real me out amongst you.

    Yes I am angry as I seem to cause pain wherever the real me goes. Sorry folks on a downer, I will crawl back up out of this hole,,,,,,maybe?