Asperger's misdiagnosis

[stefanosstef]

I believe I've been misdiagnosed with mild Asperger's by my psychiatrist who at the same time is unfamiliar with cfs/me.I believe it was a good insight since is may run in my family, after reading about it i believe my dad and perhaps by brother may have it, but it is probably wrong for me.

1.The similarities I have with Asperger's are all in the limits of my INTP type personality.When I asked her to tell me how can she differentiate me from plain INTP to Asperger's she couldn't.
2.I've had no development issues as a kid in any aspect of my abilities, on the contrary.
3.I have no issues undertanding body language, or lack in social intelligence, on the contrary.
4.I've been helped with fatigue by Wellbutrin in the past, although for a brief period of a few months.Wellbutrin shouldn't have worked if I had Asperger's, that question also she cant answer.
5.I believe my overextension and 'obsession' in learning about cfs and trying ways to deal with it is pretty much justified.I dont enjoy it but I have nothing close to normal life with this condition, doctors fail me again and again, and frankly I believe I am quote capable of helping myself and a greater candidate in understanding what is happening and what are some possible solutions than any of the doctors I've seen.I also have good relationship with science as I am a civil engineer msc.

Does anyone know some useful info that I can show to her?Is there any comparison of these 2 conditions?I am sure if she was aware of the symptoms of cfs that are similar to those in Asperger's she would change her mind.Social isolation, stimulus sensitivity (light, sounds), fatigue, irritability, all these.

 

[YippeeKi YOW !!]

@stefanosstef
I dont know if there's really any way to educate Drs out of their wrong diagnoses/guesses, but you might find something helpful in these links, posted for our use by @PatJ ..... have tagged him in here just in case he has something more up his incredible wizardy sleeve, since I've found him to be a reliable fount of all knowledge. And very generous with it.

I've supersized and underlined the two links below that seem to hold the most promise.


Using Phoenix Rising
Searching: Our Google Site Search is more accurate than our forum's built-in search. One drawback is that it doesn't include results from all areas of Phoenix Rising, such as posts that are viewable only by members. I recommend trying the Google Site Search first, then the using built-in search found near the top-right corner of each page.

Questions: We have many sub-forums for various topics related to ME/CFS. Questions posted in the appropriate sub-forum will usually receive more answers than questions posted in your welcome thread because they will be read by more people.

Symptoms, diagnosis
IOM ME/CFS/SEID diagnosis flowchart

6 page handout on the basics of ME/CFS diagnosis and management by the U.S. ME/CFS Clinician Coalition. This short overview can be useful if you have a doctor who is willing to read it.

Canadian Consensus Criteria - Comprehensive diagnostic criteria agreed upon by ME/CFS specialists.

International Consensus Criteria - Another document of comprehensive diagnostic criteria agreed upon by ME specialists.

Dr. Katrina Berne's CFS and Fibromyalgia Symptom List - Useful for finding symptoms you didn't realize may be related to ME/CFS.

Testing, treatment, and support
If you are looking for an ME/CFS doctor in your area, you can check this ME/CFS Doctor World Map or ask in our ME/CFS Doctors subforum.

Hip's Roadmap for Testing and Treatment - Hip is a member of Phoenix Rising who has compiled a detailed document that looks at ruling out other conditions (including CCI), and covers potential treatments.

Erica Verrillo's CFS Treatment Guide 2e - An older but still excellent in-depth guide published in 2012.

ME/CFS: A Primer for Clinical Practitioners - 2014 Edition

Warning about GET and CBT
Please consider carefully before following a course of graded exercise therapy (GET), or GET and cognitive behavioral therapy (CBT).

From MEAction: GET (graded exercise therapy) and CBT (cognitive behavioral therapy) are not safe for ME – summary of survey results
"Following treatment, over two thirds (67.1%) of those who underwent GET alone reported deterioration in their physical health. Three quarters (75.4%) of those who underwent GET as well as CBT reported deterioration in physical health, and for the majority (55.9%) this was a major deterioration."

Good luck stefanos. It's an uphill battle.

 

[southwestforests]

Assuming you don't already know of it, there is a long standing website and forum for we aspies and autistics and our/their families and friends; it is named Wrong Planet, and has a number of resources, and of course people to ask directly. https://wrongplanet.net/

 

[Howard]

Type

I am a Myers Briggs INTP personality type as well. And prior to my discovering, and then obsessing about personality typing (c2001), I was repeatedly forced into counseling arrangements by family members and ex's as a means to get me fixed.

It turns out I wasn't broken, just differently perceiving. And sure, based on test results it appears as though I was born into the autism spectrum, but everyone is up against something.

What's made a huge improvement for me had been to drop the obsessive thinking, limiting the pointless ruminations that kept me so easily entertained.

An overactive mind utilizes copious amounts of energy. It's draining. And at my worst, I had a terrible time with any and all external stimuli. I was basically immobile and incommunicado for two calendar years.

I realize I'm not answering your question, but is it possible that this thought-obsessing is having a detrimental affect on your health?

I didn't think it did for me until I dialed-down my thinking and started practicing daily mindfulness. Progress has been steady, but gradual (also embarked upon wholesale dietary changes etc.).

So, does the psychiatrist's diagnosis truly matter to you?

I do have information somewhere on the laptop in regards to our personality types and how they relate, or point towards certain behavioral tendencies and diagnoses (correct or not), so I'll see what I can find there. But half suspect you've already gone there.

Of course, the links provided by @YippeeKi YOW !! may suffice.


Also, I apologize if you do not find this useful, I just seem to think I know where you are coming from.

 

[Howard]

Not sure if this helps or applies, but it sheds some light upon the psychiatrist's attempted diagnosis:

http://oddlydevelopedtypes.com/content/intps-and-aspergers-syndrome-0

"The reason that these questions keep coming up over and over is that many of the descriptions of Asperger's Syndrome symptoms read like a checklist for how to identify an INTP.

Lack of social skills? - Oh yeah.
Lack of empathy? - Depends on how hard the T in INTP is.
Flat, formal, advanced speech? - Yes
Obsessed with learning about certain interest areas - Absolutely
Talk a lot about their favorite subject - If you can find someone who will listen...

Above average sensitivity to tastes, noises, lights, etc – Has been found to describe all introverts: a drop of lemon juice placed on the tongue will cause an introvert to salivate more than an extravert. (1)

Measurable associations with math and science - No question about it

The symptoms he assessed were as follows:

For well-developed types:

A preference for being alone; leading a solitary lifestyle; “spacing out (involuntarily);” “shutting out, blocking (deliberately);” having a hyperaroused nervous system; being unaware of the outside world; communicating in an associative manner; thinking in an associative manner; proceeding from specifics to generalities; thinking in pictures; lack of social skills; a limited choice of careers; “relentless reading;” perseveration; and immaturity."

 

[Rebeccare]

Although there are some small overlaps between the symptoms of ME/CFS and autism spectrum disorders (Asperger's is generally not used as a diagnosis anymore by professionals, although some people still identify with that label), there are also major differences between the two.

The big differences I think can be found in the hallmark symptoms of ME/CFS, which are the debilitating fatigue and post-exertional malaise. Although people with ASD may be worn out by certain activities, it's not quite the same. And they do not experience post-exertional malaise. Most people with ME/CFS also experience pain and/or flu-like symptoms, which is not typical of ASD. There are also other common physical characteristics such as orthostatic intolerance which are not present in ASD.

Another major difference is in the onset of symptoms. Characteristics of ASD can be seen in early development (that doesn't necessarily mean that there are developmental delays or language delays, but certain traits are evident at a young age), while people with ME/CFS were healthy up until a certain age, usually past puberty.

Another big difference is the reason for social isolation. People with ASD may be isolated either because they prefer solitude or because their challenges in social communication make it difficult for them to connect with others. People with ME/CFS are isolated mainly because they may not be physically able to engage in social activities (things like leaving bed, sitting up, leaving the house, even the physical exertion of using muscles to talk are too much).

There are some similarities, though. There does seem to be some evidence for gut issues in both conditions. And people with both ASD and ME/CFS do seem to have sensory sensitivities (although there are some people with ASD who are understimulated, while those with ME/CFS are almost always overstimulated). There are also issues with sleep in both populations.

As you can see from the responses you have received here, it is possible to both be on the autism spectrum and have ME/CFS. You may fit in that diagnostic category, and you may not (here is the current diagnostic criteria that is used in the States, which you may find helpful). It is also possible to have certain characteristics of autism without those characteristics having a large enough impact on your day-to-day functioning to merit a diagnosis of ASD. But I think that ME/CFS and ASD are two very different conditions that are unlikely to be confused for one another.

 

[stefanosstef]

Thank you everybody for your replies.The only reason I need her is that I want a doctor to watch me even once every few weeks when i am taking a medication.i could go to a new one but i prefer not to start all over.she is smart and with very good perception, i can 'up' the level of discussion when i need to explain something complicated and she almost always follows and understands my train of thought.the bad thing is that she is a little bit old school and she doesnt change her mind easily.

This is day 3 i am on wellbutrin and after that i plan to try pramipexole and possibly low dose antipsychotics after pramipexole.i am definitely more comfortable doing these experiments under a psychiatrist's supervision.

@YippeeKi YOW !!
thanks for the useful links, i will take a close look at them
i know about google search, i always chose it when i search forums or even blogs.i don't know how the built-in google search works but if you put on google site:forums.phoenixrising.me "whatever" it works pretty great.

@Howard
you are certainly right that if someone doesn't limit the time he/she puts on searching about a health issue it will affect him/her negatively and that is true for me too.
usually it goes like this:
i have a crash period.i then spend many hours studying about it for a few days, then decide upon a treatment, whatever it is, and for the duration of that testin period i stop almost all searching.i just visit healthrising once a day to see if there are any big news about cfs.

it's what i am doing now.I did some studying about light therapy, i bought a 10000 lux light to use in the morning and blue light filtering glasses to use at night to try to fix my circadian rhythm, and started again a course of wellbutrin because i was crashed for many months and i need the boost it gives me, sadly it only works for a few months so i'll have to find a new plan then.

something irrelevant since i'm talking about treatments, potato starch has done wonders for my ibs!

also that link you posted about the similarities of inpt and aspergers is one of the 2 articles i printed and gave her

 

[PatJ]

I did some studying about light therapy

Be careful with lighting. Some people with ME/CFS are quite sensitive to fluorescent and LED lights and find that they can cause problems such as increased brainfog and difficulty with comprehension

i don't know how the built-in google search works but if you put on google site:forums.phoenixrising.me "whatever" it works pretty great.

They're basically the same thing but the PR Google Site Search makes it a little easier by providing a search input box and PR navigation elements.

 

[nyanko_the_sane]

INTP, I'm a card carrying member. So you are in great company.

I have received criticism from doctors for being my own health advocate, doctors don't like to admit they don't have all the answers. Just be careful of what they write in their notes, because that can come back to bite you.

On the subject of LED lighting here is a useful article:
https://www.orientelectric.com/blog/be-wary-of-the-invisible-but-harmful-flicker-of-led-lights

 

[stefanosstef]

INTP, I'm a card carrying member. So you are in great company.

I have received criticism from doctors for being my own health advocate, doctors don't like to admit they don't have all the answers. Just be careful of what they write in their notes, because that can come back to bite you.

On the subject of LED lightening here is a useful article:
https://www.orientelectric.com/blog/be-wary-of-the-invisible-but-harmful-flicker-of-led-lights

Wow, you INTP girls are so rare!

Thanks for the link, I had no clue and I'm using 2 xiaomi led lights in living room and bedroom (the ones that can change colour).I'll change to warm cfl for a while to see if it makes any difference.And that includes my new lamp too, which is a Lumie Vitamin L, led again.I was between that model and the brazil which is older, cfl (i suppose) lamps and with a little better range so you can sit at 35cm range instead of 20cm.But I thought the newer the better and more light life so I don't have to worry about replacements.I hope it's not a big deal, I should only need to use it 30-45' in the morning, from what I understand flicker is a matter of duration and fatigue.

I've received criticism too, but I hold my own quite well and we end up in agreement most times.The health system here in Greece is a bit different, the information isn't shared in the way I've seen happen in the US.For example if you go to the hospital and get an X-ray, you take it home with you right away, they don't keep it.

 

[YippeeKi YOW !!]

@stefanosstef

here in Greece is a bit different, the information isn't shared in the way I've seen happen in the US.For example if you go to the hospital and get an X-ray, you take it home with you right away, they don't keep it.

Just what I'd expect from the cradle of democracy !!! And art and theatre and comedy and drama and history and I could go on and on .... and I usually do.