Re: Hi, new here/Medical problems

October 5, 2004

Hi I'm new here and was guided by Inger from another place - thank

you Inger.

I'm 39 years old and have two Sons who also have AS, we live in the

UK and I've been obsessed by researching AS for over ten years now,

so much so that I've made friends with some of the UK's experts;

mainly due to my knack for treating a prince like a pauper and vice

versa.

No kidding I told one of them the other day not to get his boxer

shorts in a twist - my Mother nearly died of heart failure and

reprimanded me until I informed her he'd been born naked the same as

me!!!

I wanted to offer some input into this question about Dr's not

taking illness with AS patients seriously. It is all too common, I

have degenerative spinal disease which has caused complications as

my pelvis has compensated for spinal changes. My fight leg is now

two and a half inches shorter than my left, so I step up onto my

left leg and down onto my right.

This has now caused abnormal wear and tear on my left hip and for

the past three months it dislocates all the time and is very

painful. I have an appointmet at the Royal National Orthopaedic

Hospital whom I have been under since 1986, I didn't get my

diagnosis for AS from Simon Baron-Cohen (of the twisted boxers)

until 2002. The attitude of my Consultant of sixteen years changed

along with the confirmation of AS - he wrote to Simon demanding to

know if my pain was all in my head, MRI scans show the level and

progression of the spinal disease which he diagnosed! He also said

that the pain I get from the neural pathways being trapped from

skull to but are suddenly imaginary, yet he'd not said that until

2002. He said that the pain in my legs is phantom pain syndrome

such as people who have had amputations experience.

I consider myself very fortunate because when I go in November about

my hip I am having one of the UK's AS experts attend the appointment

with me, let's see what happens then. I don't know what your

symptoms are Jo but people with AS have been found to have Hyper

Mobility Syndrome, which affects joints and bones, also they are

highly vulnerable to ME/CFS which I only learned after my eldest Son

developed ME and we were accused of Munchausen Syndrome by Proxy and

so are being persecuted by child protection and social services.

There are so many medical factors that affect people with AS but

unless you're fortunate enough to have access to information the

hypochondriac label is all to easily placed on us. That added to

ignorant GP's and many people with AS don't get the medical care or

evaluations that are nothing more than typical in AS individuals.

Sorry if I got up on my soap box there, hope this has been helpful.

Debs

>

> Thank-you all for your warm welcome. I appreciate your comments on

> mutual respect with regard to postings etc. Sorry I am not going to

> jump in the deep end with any particular " theories " just yet, but

will

> allow myself to be guided by the flow of postings. No doubt these

will

> come up at the right time in reply to other people's comments.

>

> Do people here regard themselves as disabled with regard to AS? I

did

> not consider myself disabled until I developed a physical

disability

> too. Yet all the problems I have had in trying to obtain a

diagnosis

> and treatment for my physical problems have made me wonder why do

Drs

> not listen to me or take me seriously? Could this be the AS?

>

> 4 years ago,after experiencing a number of symptoms intermittently

for

> several years, I was first sent to a Neurologist by a former GP.

The

> outcome is that although my symptoms have become much worse and are

> largely no longer intermittent, that I have been repeatedly

> discharged, told that my symptoms are " all in my head " , and

> eventually sent to see a psychologist. One of the neurologists had

> claimed that I am suffering from Conversion Disorder.

>

> Looking up conversion disorder on the internet, I discovered that

this

> is merely an updated term for Hysteria and there are references to

> Freud's theories. This so-called illness claims that physical

symptoms

> can be caused by repressed and unresolved conflicts. As I have

learned

> to cope over the years, I would reckon that I have less emotional

> problems now than at any time previously in my life. Apparently,

all

> physical illnesses which could account for the symptoms have to be

> ruled out and this certainly has not been done in my case. I am

> totally unconvinced that conversion disorder exists at all, but am

> puzzled as to why I am being treated this way. Do I come over that

> badly to Drs? Is the reason why they refuse to take my symptoms

> seriously because of something I do connected with Aspergers? Have

any

> people on this group had problems getting taken seriously by Drs?

>

> Yours

> Jo Greendragon

October 5, 2004

Welcome Debbie,

We are pleased to have you. You will find that this community is

based on friendship, respect, and support. I truly enjoy this place

and hope that you will too!

Tom

> >

> > Thank-you all for your warm welcome. I appreciate your comments

on

> > mutual respect with regard to postings etc. Sorry I am not going

to

> > jump in the deep end with any particular " theories " just yet,

but

> will

> > allow myself to be guided by the flow of postings. No doubt

these

> will

> > come up at the right time in reply to other people's comments.

> >

> > Do people here regard themselves as disabled with regard to AS?

I

> did

> > not consider myself disabled until I developed a physical

> disability

> > too. Yet all the problems I have had in trying to obtain a

> diagnosis

> > and treatment for my physical problems have made me wonder why

do

> Drs

> > not listen to me or take me seriously? Could this be the AS?

> >

> > 4 years ago,after experiencing a number of symptoms

intermittently

> for

> > several years, I was first sent to a Neurologist by a former GP.

> The

> > outcome is that although my symptoms have become much worse and

are

> > largely no longer intermittent, that I have been repeatedly

> > discharged, told that my symptoms are " all in my head " , and

> > eventually sent to see a psychologist. One of the neurologists

had

> > claimed that I am suffering from Conversion Disorder.

> >

> > Looking up conversion disorder on the internet, I discovered

that

> this

> > is merely an updated term for Hysteria and there are references

to

> > Freud's theories. This so-called illness claims that physical

> symptoms

> > can be caused by repressed and unresolved conflicts. As I have

> learned

> > to cope over the years, I would reckon that I have less emotional

> > problems now than at any time previously in my life.

Apparently,

> all

> > physical illnesses which could account for the symptoms have to

be

> > ruled out and this certainly has not been done in my case. I am

> > totally unconvinced that conversion disorder exists at all, but

am

> > puzzled as to why I am being treated this way. Do I come over

that

> > badly to Drs? Is the reason why they refuse to take my symptoms

> > seriously because of something I do connected with Aspergers?

Have

> any

> > people on this group had problems getting taken seriously by

Drs?

> >

> > Yours

> > Jo Greendragon

October 5, 2004

Hi Debbie and welcome.

I keep getting shocked by the ignorance and insensitivity of some doctors. I

suspect many are deliberately conditioned to view neurologically

hypersensitive and environmentally damaged patients as just 'mental cases'

for economic reasons. Your story is just unbelivable!

And yes, many of us seem to be extra vulnerable to things like MS, FMS, MCS,

migraine and allergies. As well as depression, phobias etc. I think that's

pretty natural if you're born with an extra sensitive nervous system and

keep getting it frazzled by all these harmful chemicals, additives, stress,

noise, bright light etc., etc. Eventually, something's got to give.

Loved the " boxers in a twist " . Hilarious! Now that you mention it, I think I

too have a knack for treating a prince like a pauper and vice versa (due to

respecting and appreciating people for their inherent goodness, loveliness

and capability, rather than their credentials, name, fame or fortune). Great

expression anyway. Can quote it?

Inger

> Hi I'm new here and was guided by Inger from another place - thank