Hi guys
For all you people who are having trouble with your GP, pychiatrists etc take a load of this.
2 years ago I complained of hightened noise sensitvity and hearing problems, my GP did not take me seriously, but agreed to a referral to audiology it never happened. Then last autumn queue breakdown, SSRI induced Mania and home pychiatric treatment, a fight to get diagnosed (a big manic fight ha ha!). Had some serious issues with my GP I saw a part time lady doctor instead who was convinced I was bi-polar (I would not have it alone!). With support from here and from my mental health support group I gave my doctor's so much shit and would not give in until they referred me to Lifespan.
I finally got diagnosed HFA 16th March. I am seeing specialist at ENT, Audiology and Neurology, still got a fight for a dietician/gastro (that another story).
Today my GP asked me to do him a favour! He wants me to see some med students to talk about my getting a diagnosis.
Here your chance (mine) to get em while they are training. I got lot to say, not sure what they wanting to know.
Anyone got any ideas.
That's fantastic! Have they given you any idea of the format?
That's fantastic! Have they given you any idea of the format?
How do you mean format? He just said what are you doing Monday morning? and would I like to help out by seeing some med students who liked to to know about my diagnosis and how I came to it.
I just gonning to go along and see what's what.
I am already involved in a research project at London City University, lovely bunch of people.
I found people do not want to know, most usually people I know, don't understand that, well I understand that it too close to home for a lot of them. I don't do no script, I am myself and will not change. I do change what I am interested in and try to stick to what I love the most (music and film). I will how ever try and keep the anger under control, some nasty sides of my personality.
How do you mean format? He just said what are you doing Monday morning? and would I like to help out by seeing some med students who liked to to know about my diagnosis and how I came to it.
I meant do they expect a "free" talk about your life, a factual information speech, or will they just ask you questions etc.
It went okay, they wanted to know about my mental health, what happen's when I have panic attacks and I explained how I came to the diagnosis. There were two of them, a young Asian girl asked questions she seemed quite nervous. I added before I left that I had a lot of trouble being diagnosed and this experience is common for adults, directed them to read such boards as 'diagnois' here and elsewhere. I also added that this is not something that we grow out of as kids, that it was a relief to understand what got me so confused, wound up, scared etc over the years.
My GP made a joke about there probably being a lot of undiagnosed adults in the science park (local business area to the North of Cambridge has a fear fure IT companies and Science companies including pharmeucueticals that kind of thing), I added that this was a misconception and a lot do not have jobs (according to the NAT something like 6% have jobs geuss that with diagnosises), that we come from all walks off lives. Mentioned the predicted figures of 1 in 100 or 150 on the spectrum. Noted that I live in a socially deprieved area, people on low incomes just like me.
I hope I lift a young doctor with something to be aware off.
I am now involved in a research project for the Autism research project about ASD and hormones. The researcher says they started this project as there is not enough about particular problem's with women as not a lot of us are diagnosed! She said they picked up lots of common appearing issues on internet forum's from people like us. It seem's they believe that we may be more prone to hormone problem's than other women. I am really excited about this one, I get £25 for my time but I would have gladly done it for free. As my GP does not really take me seriously about hormones.
I have just seen the adiologist, fantastic! I get some help and a consultant that understands! I have been issued with a soundball, some ear plugs to protect my ears at the festival I am going to and I am being fitted for hearing aids that omit white noise. He wants to make sure my tinnitus/hyperacusis does not get any worse.
Fruitcake, that seems a really positive result after all this time. I hope life continues to get better for you.
Yeah, sounds like you did a good job despite being nervous.
And that research you're taking part in sounds great. I've got PCOS, insulin resistance, am fairly butch, etc.-- definitely hormonal issues here too.
Keep chatting ladies about ya hormones, because they do read this stuff, the woman I spoke to said that they wanted to start this hormine research study because they read these kind of things that people in the community chat about and because its not something that has really been looked into ... because we autistic girls and women are a minority when more boys get diagnosed and we slip through the net.
I am have a gay man's brain in a woman's body, not a girly girl, rather thick statution (would not say butch), bloody faical hair, leg hair that grows so quick and lost of thick hair on my big head, little hands though, short legs, long body big boobs... reckon I got Premenstrual mood disorder or if not severe PMS the combined bill has helped enourmosely.
I am getting there alright. Off to a festival, camping in the livelist maddest camp with loads of new people I have never met... I am a sociable aspie and love people, everyone and all you guysxxxx
Someone asked me to talk to students of the local Med School but it never happened. I spoke on the phone to this tutor and he suggested I send him some things I'd written about personal experiences with having Asperger's so he could incorporate it into his tutorial.
Although nervous, I would have been willing to go there but lack of transport ended up killing the idea off, plus they thought it might have been "too much for me" talking in front of all those people. Ironically, I gave a talk in front of lots more people a few months later and was told I spoke quite well (which was a surprise as I don't think I'm so good at speaking)
I often think if it weren't for PMS, I'd have had hardly any meltdowns in adult life. 95% of the episodes where I've self-harmed/got very agitated have occurred when I was premenstrual. I tried the pill but it made me very ill, and other remedies didn't make much difference either.
It would be interesting to know if hormones affect how women with AS cope - I think they surely must.
Fruitcake, I've got a section on my forum where we talk about hormonal issues we have. If those researchers are interested, they are welcome to read. We also have a section for researchers to post surveys and stuff, so there's that option as well. (My forum is in my sig, btw.)
Oh, forgot to mention (or ask, really). Many of my hormonal issues seem to be linked back to insulin-type stuff. Have they wondered whether we may have a higher occurrence of diabetes issues than in the general population?
My immune issues seem to fit well under Insulin problems and IgA Deficiency. I don't know whether those two are related or I just happened to come up with the luck of the immune draw, hehe.
I keep that in mind for when I go, its 13th June. My family has loads of traits of aspies/maybe fragile x, there a history of type 2 diabetes, geneticly high cholestorol, bi-polar, speech delay, osteo-atheritas, scolerosis and that just me mam's side. My mum had early menopause too.
Will check out ya forum.
Mandy
I keep that in mind for when I go, its 13th June. My family has loads of traits of aspies/maybe fragile x, there a history of type 2 diabetes, geneticly high cholestorol, bi-polar, speech delay, osteo-atheritas, scolerosis and that just me mam's side. My mum had early menopause too.
Will check out ya forum.
Mandy
The fragile X is a biggie, IMHO. That's very closely linked with ASD-like conditions and can also bring along other symptoms, I believe one of them is loose joints?
Oh, I've got the osteoarthritis too. I've noticed on a particular PCOS forum I've gone to in the past that there seems to be MANY PCOSers with arthritis.
My particular list of medical conditions:
*insulin resistance
*suspected IgA Deficiency (have all the symptoms-- gastrointestinal stuff, allergies, asthma-- and am autistic) but need to be tested
*osteoarthritis
*PCOS
*asthma ([possibly due to IgA)
*IBS (also possibly due to IgA)
And my immune system continues to become shittier and I tend to get hit with some chronic fatigue (although not as in Chronic Fatigue Syndrome, but just chronic fatigue as a symptom). I tend to take a nap each day and it doesn't wreck my sleep schedule, I honestly need it. Doing errands for 3 hours can leave me worn for the rest of the day and needing recuperation. And this decrease in mental and physical energy has really increased and become noticeable within these last few years when all these problems listed above became either diagnosable or just more obviously problematic.