Lists of AIS Symptoms

[Bryluen]

Does anyone know where to find a list of Differing AIS symptoms? I want to know how I differ from others with AIS. Thank You B

[fraulein_Maria]

[quote=Bryluen;15550]Does anyone know where to find a list of Differing AIS symptoms? I want to know how I differ from others with AIS. Thank You B

>>> its unlikely that you differ much (if at all) from any other complete (C)-AIS'er except in ways that have nothing to do with AIS... like eye and hair color

you will differ from partial AIS'ers. there degree of "feminization" is less than yours and is measured in what is known as the "Quigley scale".

Could you post that please Miriam?

XX-CAH's like me have a scale measuring our (CAH's) degree of masculinization called the "praeder scale".

[Kailana]

in one of the fairly rescent threads on here, not sure which one it's in, but shouldn't be to hard to find, think its a couple of threads back, has alot of information on AIS.

[miriam]

Back in 1953 John Morris, an obstetrician at Yale, studied 82 women with an condition we now know as AIS or a similar condition. He had two patients of his own and the 80 others where described in medical publications. Those 82 women where used to describe what became known as the Syndrome of Morris. In some countries this name is still used.

These are quotes from his original paper.

• female habitus [=female body shape]
• 'eunuchoid tendency [= long arm and legs]
• large hands and feet
• normal female breasts that may be overdeveloped
• the nipples are sometimes juvenile
• absent or scanty auxiliary and pubic hair
• female external genitals
• The labia may be underdeveloped, especially the labia minora
• the clitoris is normal or small
• vagina ends blindly, but is usually adequate for marital relations
• the gonads are intraabdominal or may lie along the course of the inguinal canal
• gonads consisting largely of semeniferous tubules usually without spermatogenesis and have the appearance of undescended testes
• hormone assays suggest that these testes produced both estrogen and androgen and that the pituitary gonadotrophins [= hormones that are produced by the pituitary gland, which act on the gonads to control endocrine functions. Examples include follicle stimulating hormone and luteinizing hormone] were elevated.”

There are a couple of other symptoms:

• XY-chromosomes
• no acne
• no body odour
• we seem to stay looking young or at least younger than we actually are.
• lack of energy, feeling tired
• more than average incidence of women with a highly symmetrical face

A 'syndrome' is a collection of signs and symptoms that together form a condition with a known outcome but it doesn't mean everyone with a certain syndrome have ALL the signs and symptoms of that syndrome. Once a physical cause has been identified, the word "syndrome" is sometimes kept in the name of the disease.

For AIS the physical cause is an alteration in the androgen receptors (AR). In most cases (CAIS > 95%), but not all cases (PAIS<50%), it is possible to find one of the several hundred possible alterations of the AR gene with a rather expensive DNA test.

The signs and symptoms mentioned above are seens in Complete AIS and many of them are also seen in Partial AIS. 'Minimal' AIS, in which the individual is a fully formed male, is probabbly one of the most common causes of male infertility but doesn't fit in with the syndrome as Morris described it.

More information on dna testing for AIS:
http://www.geneclinics.org/profiles/...n/details.html

Groeten, Miriam

[PAISWoman]

I'm no expert but ALIAS 06 and they had a good article on AIS Clinical Grading Schemes.

"Drs. Charmain Quigley and Frank French purposed a grading scheme for phenotypic features in AIS moddled on the Prader Classification for CAH:

Grade 1 (Me)
(partial AIS with male phenotype)
describes individuals with normal androgen responsiveness in foetal life, including those with normal male external genitalia (such as infertile males with azoospermia and hormonal features of androgen resistence), those with reduced virilisation at puberty (so called minimal androgen resistance), or those with Kennedy Syndrome

Grade 2
(partial AIS with male phenotype)
decribes individuals who are unequivocally male phenotype, but have mildly defective foetal masculinization, for example hypospadias.

Grade 3
(partial AIS with male phenotype)
decribes individuals with predominatly male phenotypes but with severe defective masculinization in utero, as evidence by perineal hypospadias and small penis with undescendent testicles and/or bifid scrotum. Includes individuals with Reifenstein syndrome.

Grade 4
(partial AIS with ambigous phenotype)
describes individuals with ambigous phenotype, with severly limited masculinization evidenced by phallic structure that is indeterminate between a clitoris and penis, normally accompanied by urogential sinus with pernial orifice, labioscrotal folds with or without rugation and posterior fusion.

Grade 5
(partial AIS with female phenotype)
describes individuals with female phenotype including separate urethal and vaginal orficies with limited androgenization evidenced by mild clitoromegaly and/or small degree of posterior labial fusion.

Grade 6
(partial AIS with female phenotype)
describes individuals with female phenotype that at puberty develop androgen dependent pubic hair and/or auxillary under arm hair.

Grade 7
(CAIS)
female phenotype with absence of pubic and auxillary hair after puberty.

Breast development, ranging from mild gynaecomastia to abundant Tanner stage V female breast can occur with all grades of AIS, tending to be more prononuced with the more severe grades."

Information taken from AIS Support group Newsletter ALIAS vol.1 number 6 winter 1996.

I'm not sure if this was the information that you were looking for but the article has pictures that helped me a lot to destinguish between the grades with so much conflicting information out there.

Hopes this helps.

[Trixie]

I think that Charmian's is the most accurate to date.

On an aside, I spoke with her directly to get her opinion regarding the amount of estrogen I take because although high it was the only thing that relieved my really bad "menopausal" symptoms. Her opinion was, "that with all hormonal treatments there is no "right" or "wrong" dose, but rather, the dose that addresses the issues or concerns of the individual patient. If you need 4 mg of estradiol to achieve this, then in my view this is OK."

Emily

[fraulein_Maria]

[quote=PAISWoman;15587]I'm no expert but ALIAS 06 and they had a good article on AIS Clinical Grading Schemes.

"Drs. Charmain Quigley and Frank French purposed a grading scheme for phenotypic features in AIS moddled on the Prader Classification for CAH:


>>> thanks. i have been looking for just that and i'm glad you found and posted it. <<<

[george.bush]

# The labia may be underdeveloped, especially the labia minora
# the clitoris is normal or small
# vagina ends blindly, but is usually adequate for marital relations
# the gonads are intraabdominal or may lie along the course of the inguinal canal
# gonads consisting largely of semeniferous tubules usually without spermatogenesis and have the appearance of undescended testes
# hormone assays suggest that these testes produced both estrogen and androgen and that the pituitary gonadotrophins [= hormones that are produced by the pituitary gland, which act on the gonads to control endocrine functions. Examples include follicle stimulating hormone and luteinizing hormone] were elevated.”

[EMW]

Can we please get this george.bush aka george.cole banned yet again.

Emily