Re: New to all this...

[Guest guest]

Hi . I don't know much about real world support, although

you might be able to find other adult Aspies through meetup.com.

But there's lots of online support. Try wrongplanet.net to start.

Willa

[Guest guest]

Hi ,

I have only recently discovered my son, age 18, has Asperger's. I

understand some of what you are going through. I have been looking for

some type of group or support for young adults with Aspergers and have

found nothing yet in my area (Missouri). The local Autism office said

there is nothing they know of, yet they also said they get many such

calls and that we have many people with Aspergers in our community.

The only suggestion they offered is the local mental health clinic. I

asked if they know of anyone who specializes in, or has treated,

Aspergers. There is only one doctor who is treating Autistic children,

and he does not treat adults. It can be frustrating. I was hoping for

a group where young adults could gather with the help of an Asperger's

specialist of some sort.

My son will be starting his second year of college this month. He

also has anxiety, but doesn't like medications and has had some

success using meditation and deep breathing kinds of techniques. He

also does not like lots of noise, and the rowdiness of his fellow

students really makes him want to escape the situation. Although he

has made it through his classes, he has not made any friends. He does

not seem to want to have lots of friends, but I think a friend or two

would make him happier. Do you have trouble making friends?

We also deal with family who think it is odd that my son doesn't go

out with friends, or do the typical young adult activities. He gets

tired of people telling him that he should talk more, or making

comments about how quiet he is. Do you get questioned about this?

I apologize that I do not have answers for you. But, I really hope you

will continue to post in this forum. Perhaps both you and my son can

eventually discover a place to be yourselves.

take care,

Sue

>

> Hi everyone!

>

> My name is , I'm 20 and just diagnosed with Aspergers. My parents

> told me that all the schools/doctor/professionals I went to as a kid

> always thought I had Autism or Asperger's but everyone refused to

> diagonses me with it becasue they tought it would hold me back in

> school or something like that. Now that I am an adult I find it hard to

> find any type of support since I was not diagnosed as a child. I am

> lost in the world of ASD and don't really know what to do with this

> diagnoses. I am told that back in the 80's and early 90's

> Asperger's/High Functioning Autism was not widly accepted and diagnosed

> but where does an adult newly diagnoses go to for help?!?!?

>

[Guest guest]

Sue,

I am not quite AT ALL... I have no problem telling you what I think which is very different from other people with Asperger's I learned this becasuse I was always told to speak out I need to learn how to take care of my own problems. I do have problems making friends and really only have 2 good friends. I do not have any friends in Oklahoma which is were we are stationed at (in Ft. Sill,OK) but the people I have meet so far I would not want to be friends with.

( ) Re: New to all this...

Hi ,I have only recently discovered my son, age 18, has Asperger's. Iunderstand some of what you are going through. I have been looking forsome type of group or support for young adults with Aspergers and havefound nothing yet in my area (Missouri). The local Autism office saidthere is nothing they know of, yet they also said they get many suchcalls and that we have many people with Aspergers in our community.The only suggestion they offered is the local mental health clinic. Iasked if they know of anyone who specializes in, or has treated,Aspergers. There is only one doctor who is treating Autistic children,and he does not treat adults. It can be frustrating. I was hoping fora group where young adults could gather with the help of an Asperger'sspecialist of some sort.My son will be starting his second year of college this month. Healso has anxiety, but doesn't like medications and has

had somesuccess using meditation and deep breathing kinds of techniques. Healso does not like lots of noise, and the rowdiness of his fellowstudents really makes him want to escape the situation. Although hehas made it through his classes, he has not made any friends. He doesnot seem to want to have lots of friends, but I think a friend or twowould make him happier. Do you have trouble making friends?We also deal with family who think it is odd that my son doesn't goout with friends, or do the typical young adult activities. He getstired of people telling him that he should talk more, or makingcomments about how quiet he is. Do you get questioned about this?I apologize that I do not have answers for you. But, I really hope youwill continue to post in this forum. Perhaps both you and my son caneventually discover a place to be yourselves.take care,Sue>> Hi everyone!> > My name is , I'm 20 and just diagnosed with Aspergers. My parents > told me that all the schools/doctor/ professionals I went to as a kid > always thought I had Autism or Asperger's but everyone refused to > diagonses me with it becasue they tought it would hold me back in > school or something like that. Now that I am an adult I find it hard to > find any type of support since I was not diagnosed as a child. I am > lost in the world of ASD and don't really know what to do with this > diagnoses. I am told that back in the 80's and early 90's > Asperger's/High Functioning Autism was not widly accepted and diagnosed >

but where does an adult newly diagnoses go to for help?!?!?>

[Guest guest]

,

Are you in College? or married? or still living at home with your parents? Are you working? I would think you might try speaking with a pscyhologist first....and then look in the newspaper or hospital and see if there are not any groups you could join....and what about church...are there any groups at any of the church around or near you. Are you looking for help with you DX or looking for friends or both????

Jan

Jan Rushen

Smile because it is contagious!!!!

From: Whiting <armymansfieldbrat@...>Subject: Re: ( ) Re: New to all this... Date: Thursday, August 21, 2008, 5:46 PM

Sue,

I am not quite AT ALL... I have no problem telling you what I think which is very different from other people with Asperger's I learned this becasuse I was always told to speak out I need to learn how to take care of my own problems. I do have problems making friends and really only have 2 good friends. I do not have any friends in Oklahoma which is were we are stationed at (in Ft. Sill,OK) but the people I have meet so far I would not want to be friends with.

( ) Re: New to all this...

Hi ,I have only recently discovered my son, age 18, has Asperger's. Iunderstand some of what you are going through. I have been looking forsome type of group or support for young adults with Aspergers and havefound nothing yet in my area (Missouri). The local Autism office saidthere is nothing they know of, yet they also said they get many suchcalls and that we have many people with Aspergers in our community.The only suggestion they offered is the local mental health clinic. Iasked if they know of anyone who specializes in, or has treated,Aspergers. There is only one doctor who is treating Autistic children,and he does not treat adults. It can be frustrating. I was hoping fora group where young adults could gather with the help of an Asperger'sspecialist of some sort.My son will be starting his second year of college this month. Healso has anxiety, but doesn't like medications and has

had somesuccess using meditation and deep breathing kinds of techniques. Healso does not like lots of noise, and the rowdiness of his fellowstudents really makes him want to escape the situation. Although hehas made it through his classes, he has not made any friends. He doesnot seem to want to have lots of friends, but I think a friend or twowould make him happier. Do you have trouble making friends?We also deal with family who think it is odd that my son doesn't goout with friends, or do the typical young adult activities. He getstired of people telling him that he should talk more, or makingcomments about how quiet he is. Do you get questioned about this?I apologize that I do not have answers for you. But, I really hope youwill continue to post in this forum. Perhaps both you and my son caneventually discover a place to be yourselves.take care,Sue>> Hi everyone!> > My name is , I'm 20 and just diagnosed with Aspergers. My parents > told me that all the schools/doctor/ professionals I went to as a kid > always thought I had Autism or Asperger's but everyone refused to > diagonses me with it becasue they tought it would hold me back in > school or something like that. Now that I am an adult I find it hard to > find any type of support since I was not diagnosed as a child. I am > lost in the world of ASD and don't really know what to do with this > diagnoses. I am told that back in the 80's and early 90's > Asperger's/High Functioning Autism was not widly accepted and diagnosed > but where does an adult newly diagnoses go to for

help?!?!?>

[Guest guest]

I'm not in college anymore... it just didn't work out. I am still at home living with my parents so I can stay on there health-insurance until we get all the papers filled,mail,and re-approved;my dad is in the military so they are somewhat understanding. I am looking for any support I can get I know if I find one everything else will fall in place. We live in a small town about 95miles southwest of OKC even though there is a military base and a university here there is really only about 105,000 people most of them are military or contractors all specialist are either in OKC or Wichita Falls,TX and we had to fight to go see a psychiatrist once we got one... they ended up sending me to a TRAUMA SURGEON!!!!! All though he is very nice and seems to know alot about other illnesses he only knows the

basic info about ASD's and MR. He tries his best and at this point that is all I can ask for. I do have a psychologist who is good but according to him all the kids with ASD's and MR he likes to send them to Texas or OKC and adults are put into a group home I don't think I want to go into a group home (maybe later but not right now)

I am mad that there is no one to help me in the area even the Voc Rehab here did some testing and said that the kind of help I needed is not avalible in this area and I would need to go to OKC or Tulsa to get help... Who can afford to do that?!?! I just feel trapped and alone! Every where I turn I run into a brick wall.

( ) Re: New to all this...

Hi ,I have only recently discovered my son, age 18, has Asperger's. Iunderstand some of what you are going through. I have been looking forsome type of group or support for young adults with Aspergers and havefound nothing yet in my area (Missouri). The local Autism office saidthere is nothing they know of, yet they also said they get many suchcalls and that we have many people with Aspergers in our community.The only suggestion they offered is the local mental health clinic. Iasked if they know of anyone who specializes in, or has treated,Aspergers. There is only one doctor who is treating Autistic children,and he does not treat adults. It can be frustrating. I was hoping fora group where young adults could gather with the help of an Asperger'sspecialist of some sort.My son will be starting his second year of college this month. Healso has anxiety, but doesn't like medications and has

had somesuccess using meditation and deep breathing kinds of techniques. Healso does not like lots of noise, and the rowdiness of his fellowstudents really makes him want to escape the situation. Although hehas made it through his classes, he has not made any friends. He doesnot seem to want to have lots of friends, but I think a friend or twowould make him happier. Do you have trouble making friends?We also deal with family who think it is odd that my son doesn't goout with friends, or do the typical young adult activities. He getstired of people telling him that he should talk more, or makingcomments about how quiet he is. Do you get questioned about this?I apologize that I do not have answers for you. But, I really hope youwill continue to post in this forum. Perhaps both you and my son caneventually discover a place to be yourselves.take care,Sue>> Hi everyone!> > My name is , I'm 20 and just diagnosed with Aspergers. My parents > told me that all the schools/doctor/ professionals I went to as a kid > always thought I had Autism or Asperger's but everyone refused to > diagonses me with it becasue they tought it would hold me back in > school or something like that. Now that I am an adult I find it hard to > find any type of support since I was not diagnosed as a child. I am > lost in the world of ASD and don't really know what to do with this > diagnoses. I am told that back in the 80's and early 90's > Asperger's/High Functioning Autism was not widly accepted and diagnosed >

but where does an adult newly diagnoses go to for help?!?!?>

[Guest guest]

I am no expert in this at all....but find someone even a minister that you can talk to....it must be fustrating and I hear it in your post. Keep posting if you need to. Read...Read and Read some more. Is there a speech specialist or OT specialist in your area....whatever you do ...don't give up....it will get better...right now you are going thru a difficult period...is there anyone at the college who could help you or point you in the right direction??? Where you are is there MH/MR services...you could go and ask them?

I sorry I don't have the answers for you ...but keep posting if it helps....and read every thing you can on the internet....

Jan

Jan Rushen

Smile because it is contagious!!!!

From: Whiting <armymansfieldbrat>Subject: Re: ( ) Re: New to all this... Date: Thursday, August 21, 2008, 5:46 PM

Sue,

I am not quite AT ALL... I have no problem telling you what I think which is very different from other people with Asperger's I learned this becasuse I was always told to speak out I need to learn how to take care of my own problems. I do have problems making friends and really only have 2 good friends. I do not have any friends in Oklahoma which is were we are stationed at (in Ft. Sill,OK) but the people I have meet so far I would not want to be friends with.

( ) Re: New to all this...

Hi ,I have only recently discovered my son, age 18, has Asperger's. Iunderstand some of what you are going through. I have been looking forsome type of group or support for young adults with Aspergers and havefound nothing yet in my area (Missouri). The local Autism office saidthere is nothing they know of, yet they also said they get many suchcalls and that we have many people with Aspergers in our community.The only suggestion they offered is the local mental health clinic. Iasked if they know of anyone who specializes in, or has treated,Aspergers. There is only one doctor who is treating Autistic children,and he does not treat adults. It can be frustrating. I was hoping fora group where young adults could gather with the help of an Asperger'sspecialist of some sort.My son will be starting his second year of college this month. Healso has anxiety, but doesn't like medications and has

had somesuccess using meditation and deep breathing kinds of techniques. Healso does not like lots of noise, and the rowdiness of his fellowstudents really makes him want to escape the situation. Although hehas made it through his classes, he has not made any friends. He doesnot seem to want to have lots of friends, but I think a friend or twowould make him happier. Do you have trouble making friends?We also deal with family who think it is odd that my son doesn't goout with friends, or do the typical young adult activities. He getstired of people telling him that he should talk more, or makingcomments about how quiet he is. Do you get questioned about this?I apologize that I do not have answers for you. But, I really hope youwill continue to post in this forum. Perhaps both you and my son caneventually discover a place to be yourselves.take care,Sue>> Hi everyone!> > My name is , I'm 20 and just diagnosed with Aspergers. My parents > told me that all the schools/doctor/ professionals I went to as a kid > always thought I had Autism or Asperger's but everyone refused to > diagonses me with it becasue they tought it would hold me back in > school or something like that. Now that I am an adult I find it hard to > find any type of support since I was not diagnosed as a child. I am > lost in the world of ASD and don't really know what to do with this > diagnoses. I am told that back in the 80's and early 90's > Asperger's/High Functioning Autism was not widly accepted and diagnosed > but where does an adult newly diagnoses go to for

help?!?!?>

[Guest guest]

, I hear and understand your frustration a little. Our son, 23,

is on the spectrum somewhere and tests in an MR range sometimes and it

has been hard to find anything for him.

You mentioned Voc Rehab, in our state, the state will pay for

everything related to training, room and board and transportation back

and forth to the Voc Rehab Centers. If they have something that you

are interested in training for. Our closest Voc Rehab is about 100

miles away.

My son ended up going to a JobCorps Center that was also about 100

miles away. He wanted culinary arts training. There are about five

JobCorps centers in your state and they offer a wide variety of

vocational training opportunities. Here is a link to them:

http://jobcorps.dol.gov/centers/ok.htm.

We felt like what they offered was more like what our son wanted than

VocRehab. And again, all of your expenses would be covered by the

government, even transportation.

Good luck, you sound like a good advocate for yourself and that is a

valuable skill.

Sue in Tennessee

> >

> > Hi everyone!

> >

> > My name is , I'm 20 and just diagnosed with Aspergers. My

parents

> > told me that all the schools/doctor/ professionals I went to as a kid

> > always thought I had Autism or Asperger's but everyone refused to

> > diagonses me with it becasue they tought it would hold me back in

> > school or something like that. Now that I am an adult I find it

hard to

> > find any type of support since I was not diagnosed as a child. I am

> > lost in the world of ASD and don't really know what to do with this

> > diagnoses. I am told that back in the 80's and early 90's

> > Asperger's/High Functioning Autism was not widly accepted and

diagnosed

> > but where does an adult newly diagnoses go to for help?!?!?

> >

>

[Guest guest]

We do have a MH/MR but they have no services for adults...

( ) Re: New to all this...

Hi ,I have only recently discovered my son, age 18, has Asperger's. Iunderstand some of what you are going through. I have been looking forsome type of group or support for young adults with Aspergers and havefound nothing yet in my area (Missouri). The local Autism office saidthere is nothing they know of, yet they also said they get many suchcalls and that we have many people with Aspergers in our community.The only suggestion they offered is the local mental health clinic. Iasked if they know of anyone who specializes in, or has treated,Aspergers. There is only one doctor who is treating Autistic children,and he does not treat adults. It can be frustrating. I was hoping fora group where young adults could gather with the help of an Asperger'sspecialist of some sort.My son will be starting his second year of college this month. Healso has anxiety, but doesn't like medications and has

had somesuccess using meditation and deep breathing kinds of techniques. Healso does not like lots of noise, and the rowdiness of his fellowstudents really makes him want to escape the situation. Although hehas made it through his classes, he has not made any friends. He doesnot seem to want to have lots of friends, but I think a friend or twowould make him happier. Do you have trouble making friends?We also deal with family who think it is odd that my son doesn't goout with friends, or do the typical young adult activities. He getstired of people telling him that he should talk more, or makingcomments about how quiet he is. Do you get questioned about this?I apologize that I do not have answers for you. But, I really hope youwill continue to post in this forum. Perhaps both you and my son caneventually discover a place to be yourselves.take care,Sue>> Hi everyone!> > My name is , I'm 20 and just diagnosed with Aspergers. My parents > told me that all the schools/doctor/ professionals I went to as a kid > always thought I had Autism or Asperger's but everyone refused to > diagonses me with it becasue they tought it would hold me back in > school or something like that. Now that I am an adult I find it hard to > find any type of support since I was not diagnosed as a child. I am > lost in the world of ASD and don't really know what to do with this > diagnoses. I am told that back in the 80's and early 90's > Asperger's/High Functioning Autism was not widly accepted and diagnosed >

but where does an adult newly diagnoses go to for help?!?!?>

[Guest guest]

Hi ,I have been reading all your posts and it is very apparent that you are no quitter!!! Be proud of who you are and keep looking. I can't wait to hear from you with any new info that you can find out about. Just don't give up. The right door for you is not too far away, you just have to keep looking. Sue

From: Whiting <armymansfieldbrat>Subject: Re: ( ) Re: New to all this... Date: Thursday, August 21, 2008, 5:46 PM

Sue,

I am not quite AT ALL... I have no problem telling you what I think which is very different from other people with Asperger's I learned this becasuse I was always told to speak out I need to learn how to take care of my own problems. I do have problems making friends and really only have 2 good friends. I do not have any friends in Oklahoma which is were we are stationed at (in Ft. Sill,OK) but the people I have meet so far I would not want to be friends with.

( ) Re: New to all this...

Hi ,I have only recently discovered my son, age 18, has Asperger's. Iunderstand some of what you are going through. I have been looking forsome type of group or support for young adults with Aspergers and havefound nothing yet in my area (Missouri). The local Autism office saidthere is nothing they know of, yet they also said they get many suchcalls and that we have many people with Aspergers in our community.The only suggestion they offered is the local mental health clinic. Iasked if they know of anyone who specializes in, or has treated,Aspergers. There is only one doctor who is treating Autistic children,and he does not treat adults. It can be frustrating. I was hoping fora group where young adults could gather with the help of an Asperger'sspecialist of some sort.My son will be starting his second year of college this month. Healso has anxiety, but doesn't like medications and has

had somesuccess using meditation and deep breathing kinds of techniques. Healso does not like lots of noise, and the rowdiness of his fellowstudents really makes him want to escape the situation. Although hehas made it through his classes, he has not made any friends. He doesnot seem to want to have lots of friends, but I think a friend or twowould make him happier. Do you have trouble making friends?We also deal with family who think it is odd that my son doesn't goout with friends, or do the typical young adult activities. He getstired of people telling him that he should talk more, or makingcomments about how quiet he is. Do you get questioned about this?I apologize that I do not have answers for you. But, I really hope youwill continue to post in this forum. Perhaps both you and my son caneventually discover a place to be yourselves.take care,Sue>> Hi everyone!> > My name is , I'm 20 and just diagnosed with Aspergers. My parents > told me that all the schools/doctor/ professionals I went to as a kid > always thought I had Autism or Asperger's but everyone refused to > diagonses me with it becasue they tought it would hold me back in > school or something like that. Now that I am an adult I find it hard to > find any type of support since I was not diagnosed as a child. I am > lost in the world of ASD and don't really know what to do with this > diagnoses. I am told that back in the 80's and early 90's > Asperger's/High Functioning Autism was not widly accepted and diagnosed >

but where does an adult newly diagnoses go to for help?!?!?>

[Guest guest]

That amazes me...there must be some agency around there ...but don't give up hope!

Jan Rushen

Smile because it is contagious!!!!

From: Whiting <armymansfieldbrat>Subject: Re: ( ) Re: New to all this... Date: Thursday, August 21, 2008, 5:46 PM

Sue,

I am not quite AT ALL... I have no problem telling you what I think which is very different from other people with Asperger's I learned this becasuse I was always told to speak out I need to learn how to take care of my own problems. I do have problems making friends and really only have 2 good friends. I do not have any friends in Oklahoma which is were we are stationed at (in Ft. Sill,OK) but the people I have meet so far I would not want to be friends with.

( ) Re: New to all this...

Hi ,I have only recently discovered my son, age 18, has Asperger's. Iunderstand some of what you are going through. I have been looking forsome type of group or support for young adults with Aspergers and havefound nothing yet in my area (Missouri). The local Autism office saidthere is nothing they know of, yet they also said they get many suchcalls and that we have many people with Aspergers in our community.The only suggestion they offered is the local mental health clinic. Iasked if they know of anyone who specializes in, or has treated,Aspergers. There is only one doctor who is treating Autistic children,and he does not treat adults. It can be frustrating. I was hoping fora group where young adults could gather with the help of an Asperger'sspecialist of some sort.My son will be starting his second year of college this month. Healso has anxiety, but doesn't like medications and has

had somesuccess using meditation and deep breathing kinds of techniques. Healso does not like lots of noise, and the rowdiness of his fellowstudents really makes him want to escape the situation. Although hehas made it through his classes, he has not made any friends. He doesnot seem to want to have lots of friends, but I think a friend or twowould make him happier. Do you have trouble making friends?We also deal with family who think it is odd that my son doesn't goout with friends, or do the typical young adult activities. He getstired of people telling him that he should talk more, or makingcomments about how quiet he is. Do you get questioned about this?I apologize that I do not have answers for you. But, I really hope youwill continue to post in this forum. Perhaps both you and my son caneventually discover a place to be yourselves.take care,Sue>> Hi everyone!> > My name is , I'm 20 and just diagnosed with Aspergers. My parents > told me that all the schools/doctor/ professionals I went to as a kid > always thought I had Autism or Asperger's but everyone refused to > diagonses me with it becasue they tought it would hold me back in > school or something like that. Now that I am an adult I find it hard to > find any type of support since I was not diagnosed as a child. I am > lost in the world of ASD and don't really know what to do with this > diagnoses. I am told that back in the 80's and early 90's > Asperger's/High Functioning Autism was not widly accepted and diagnosed > but where does an adult newly diagnoses go to for

help?!?!?>

[Guest guest]

Hi again, ,

it's Sue in MO. I so understand your frustration. I have also been

told the only resources here are for children with autism. And they

tend to focus on the other end of the spectrum, I guess you'd say.

There is no one with an emphasis on Aspergers. I don't understand how

this can be. They don't disappear when they become young adults. It

seems that in our areas they have yet to start dealing with this.

Have you found any online groups to be helpful?

Do you think you could live on your own? Or would you want to someday?

Don't give up! You are in my thoughts,

Sue

>

> We do have a MH/MR but they have no services for adults...

>

>

[Guest guest]

Oh, ! I can see why you are so frustrated. Can your parents

advocate for you at all? I agree with Jan, you may have to try to

help yourself, find a minister, local special ed teacher, maybe a

local AS mom who will take you under her wing, too. I understand why

you feel trapped. This group is here, you can post for whatever info

you want or need, and most of us will help you by personal email I'm

sure. Hang in there sweetie, do NOT give up hope! We're all pulling

for you.

> >

> > Hi everyone!

> >

> > My name is , I'm 20 and just diagnosed with Aspergers. My

parents

> > told me that all the schools/doctor/ professionals I went to as a

kid

> > always thought I had Autism or Asperger's but everyone refused to

> > diagonses me with it becasue they tought it would hold me back in

> > school or something like that. Now that I am an adult I find it

hard to

> > find any type of support since I was not diagnosed as a child. I

am

> > lost in the world of ASD and don't really know what to do with

this

> > diagnoses. I am told that back in the 80's and early 90's

> > Asperger's/High Functioning Autism was not widly accepted and

diagnosed

> > but where does an adult newly diagnoses go to for help?!?!?

> >

>

[Guest guest]

Sue,

I have been talking with the DFW chapter of the ASA and they have been helping more then the OKC one. Since we are from DFW and still legal residents (my dad is in the Army) They are trying to figure out if I can get help there too since I am still a legal resident.

I would love to live on my own but at this point I am not ready... Also they day I move out; and it is not to a group home; is the day i lose all support (ie. Health Insurance) from the US Military. I have applied from SSI..I was on it when I was a kid... but I am in a 2 year stand still. I got denined once becasue my doctors did not send my records in fast enough. So I got all my records from every doctor I have ever seen and hand delivered them to them I also hired a lawyer to help me.

( ) Re: New to all this...

Hi again, ,it's Sue in MO. I so understand your frustration. I have also beentold the only resources here are for children with autism. And theytend to focus on the other end of the spectrum, I guess you'd say. There is no one with an emphasis on Aspergers. I don't understand howthis can be. They don't disappear when they become young adults. Itseems that in our areas they have yet to start dealing with this.Have you found any online groups to be helpful?Do you think you could live on your own? Or would you want to someday?Don't give up! You are in my thoughts,Sue>> We do have a MH/MR but they have no services for adults...> >

[Guest guest]

.

I have heard it takes a couple of times applying and that getting a lawyer is the way to go. So don't give up...sounds like you are on track. And, don't move out yet as you said you would lose your benefits!!!

best wishes

Jan

Jan Rushen

Smile because it is contagious!!!!

From: Whiting <armymansfieldbrat@...>Subject: Re: ( ) Re: New to all this... Date: Saturday, August 23, 2008, 12:22 PM

Sue,

I have been talking with the DFW chapter of the ASA and they have been helping more then the OKC one. Since we are from DFW and still legal residents (my dad is in the Army) They are trying to figure out if I can get help there too since I am still a legal resident.

I would love to live on my own but at this point I am not ready... Also they day I move out; and it is not to a group home; is the day i lose all support (ie. Health Insurance) from the US Military. I have applied from SSI..I was on it when I was a kid... but I am in a 2 year stand still. I got denined once becasue my doctors did not send my records in fast enough. So I got all my records from every doctor I have ever seen and hand delivered them to them I also hired a lawyer to help me.

( ) Re: New to all this...

Hi again, ,it's Sue in MO. I so understand your frustration. I have also beentold the only resources here are for children with autism. And theytend to focus on the other end of the spectrum, I guess you'd say. There is no one with an emphasis on Aspergers. I don't understand howthis can be. They don't disappear when they become young adults. Itseems that in our areas they have yet to start dealing with this.Have you found any online groups to be helpful?Do you think you could live on your own? Or would you want to someday?Don't give up! You are in my thoughts,Sue>> We do have a MH/MR but they have no services for adults...> >

[Guest guest]

TAking BCPs?On Jul 30, 2012, at 7:28 PM, ntmc45 wrote:

Hello, I'm new to this board and to health issues in general but thought I might post to try to get some feedback on my lab results.

I'm a 40 yr old female who went to a walk in clinic on 6/1/12 with a 2nd degree burn (hot coffee spilled on my arm). While being treated for the burn they took my BP and it was 180/110, which was a shock, as the last time I got it checked (late Oct of 2011) it was a perfect 120/80. The Dr. sent me for tests, EKG, urine & blood then gave me an emergency rx to take over the weekend (6/1 was a Friday). I went back on Monday and they told me the EKG and blood tests came back fine but there was protein in my urine (MALB/CRE Ratio 122.2 mg/g) and my BP was still pretty high (160/90).

Two weeks later, with no huge change in my BP, my Dr. started sending me for blood tests which required special treatment (blood on ice), and referred me to a Nephrologist and Endocrinologist. I've had two specific blood tests for Aldosterone and Renin and I'm not sure what these levels mean...they keep down playing the likelihood of hyperaldosteronism but the more I read the more suspicious I become.

Is it normal for this to be a 'sudden onset' syndrome or is it possible I am being caught at an early stage? I have historically had low Potassium levels but can usually get it in to the normal range by amending my diet (eating bananas mostly, lots and lots of bananas). I've never taken medication for a health problem before. A few months before my BP tested so high, I started having vicious leg cramps, which I chalked up to low K and just ate more bananas. But now I'm wondering...the only issue is, my Renin seems normal.

My test results were:

Aldosterone: 6/22 = 31 ng/dL (on Lisonopril) and 7/26 = 37 ng/dL (on Amlodipine) ref range <=21

Renin: 6/22 = 6/22 = 7.4 ng/dL (on Lisonopril) and 7/26 = 6.9 ng/dL (on Amlodipine) REFERENCE VALUE -- (Peripheral vein specimen) Na-deplete, upright: Mean: 5.9 Range: 2.9-10.8

Potassium: 6/22 = 3.2 (on Lisonopril) and 7/26 = 3.4 (on Amlodipine)

PTH Intact: 7/26 = 61 pg/ml (just this one reading from the Nephrologist)

I haven't seen the Endocrinologist yet. Any advice you could give would be much appreciated!

[Guest guest]

First, I am always suspicious when the nurse or MA gets a perfect 120/80. Did they get this on a machine or did they take it by hand and ear or do you recall (because you may have had HTN longer is what I am getting at)? Sometimes it's high and they just don't hear it, or they drop the sphyg numbers too fast, or think they didn't hear it right because it's high and since you look healthy, they think the high numbers they got was their fault and are embarrassed to retake it and then they just default to perfect - a "120/80".

Your potassium is low and likely lower if they did not take it right. Using a tourniquet to draw the blood usually results in a fasle high on the potassium.

Do you pee alot at night? Have you seemed to feel fatigued alot more than usual? Headaches you can't explain?

And I am assuming that your renin and aldosterone was a blood test and not a urine test? Not the right way to get it. One way, if they aren't going to do the testing right is to try a quick trial of spironolactone - the med that blocks the aldosterone - and if your pressure drops you'll likely know with some certainty it's hyperaldosterone. The other meds they have you on do not work in hyperaldosteronism. They will be resistant to that, but tell them the "experts" who have taken it say it never causes a "high" potassium

Look at Dr Grimms welcome and the proper way to test for it in our files. I am sure you'll have a bunch of us telling you that. But this is the place for those questions.

From: ntmc45 <ntmc45@...>Subject: New to all this...hyperaldosteronism Date: Monday, July 30, 2012, 7:28 PM

Hello, I'm new to this board and to health issues in general but thought I might post to try to get some feedback on my lab results. I'm a 40 yr old female who went to a walk in clinic on 6/1/12 with a 2nd degree burn (hot coffee spilled on my arm). While being treated for the burn they took my BP and it was 180/110, which was a shock, as the last time I got it checked (late Oct of 2011) it was a perfect 120/80. The Dr. sent me for tests, EKG, urine & blood then gave me an emergency rx to take over the weekend (6/1 was a Friday). I went back on Monday and they told me the EKG and blood tests came back fine but there was protein in my urine (MALB/CRE Ratio 122.2 mg/g) and my BP was still pretty high (160/90).Two weeks later, with no huge change in my BP, my Dr. started sending me for blood tests which required special treatment (blood on ice), and referred me to a Nephrologist and Endocrinologist. I've had two specific blood tests

for Aldosterone and Renin and I'm not sure what these levels mean...they keep down playing the likelihood of hyperaldosteronism but the more I read the more suspicious I become. Is it normal for this to be a 'sudden onset' syndrome or is it possible I am being caught at an early stage? I have historically had low Potassium levels but can usually get it in to the normal range by amending my diet (eating bananas mostly, lots and lots of bananas). I've never taken medication for a health problem before. A few months before my BP tested so high, I started having vicious leg cramps, which I chalked up to low K and just ate more bananas. But now I'm wondering...the only issue is, my Renin seems normal.My test results were:Aldosterone: 6/22 = 31 ng/dL (on Lisonopril) and 7/26 = 37 ng/dL (on Amlodipine) ref range <=21Renin: 6/22 = 6/22 = 7.4 ng/dL (on Lisonopril) and 7/26 = 6.9 ng/dL (on Amlodipine) REFERENCE VALUE -- (Peripheral

vein specimen) Na-deplete, upright: Mean: 5.9 Range: 2.9-10.8 Potassium: 6/22 = 3.2 (on Lisonopril) and 7/26 = 3.4 (on Amlodipine)PTH Intact: 7/26 = 61 pg/ml (just this one reading from the Nephrologist)I haven't seen the Endocrinologist yet. Any advice you could give would be much appreciated!

[Guest guest]

Ha! That's what my Dr. said too (about BP being too perfect). It was by hand

and ear.

They did take my blood using a tourniquet.

I do pee a lot at night (a lot to me at least, 2-3 times), feel fatigued often

and have headaches frequently (put down to vision changes).

Everything done so far has been a blood test...I suspect the endocrinologist is

going to be the one who really 'takes this on' as the other two drs say things

like, " they have the facilities to do a sodium load test " which I've read is one

of the next steps toward an actual diagnosis.

Thanks for the direction, I will read up on the files suggested.

>

>

> From: ntmc45 <ntmc45@...>

> Subject: New to all this...

> hyperaldosteronism

> Date: Monday, July 30, 2012, 7:28 PM

>

>

>

>  

>

>

>

> Hello, I'm new to this board and to health issues in general but thought I

might post to try to get some feedback on my lab results.

>

> I'm a 40 yr old female who went to a walk in clinic on 6/1/12 with a 2nd

degree burn (hot coffee spilled on my arm). While being treated for the burn

they took my BP and it was 180/110, which was a shock, as the last time I got it

checked (late Oct of 2011) it was a perfect 120/80. The Dr. sent me for tests,

EKG, urine & blood then gave me an emergency rx to take over the weekend (6/1

was a Friday). I went back on Monday and they told me the EKG and blood tests

came back fine but there was protein in my urine (MALB/CRE Ratio 122.2 mg/g) and

my BP was still pretty high (160/90).

>

> Two weeks later, with no huge change in my BP, my Dr. started sending me for

blood tests which required special treatment (blood on ice), and referred me to

a Nephrologist and Endocrinologist. I've had two specific blood tests for

Aldosterone and Renin and I'm not sure what these levels mean...they keep down

playing the likelihood of hyperaldosteronism but the more I read the more

suspicious I become.

>

> Is it normal for this to be a 'sudden onset' syndrome or is it possible I am

being caught at an early stage? I have historically had low Potassium levels but

can usually get it in to the normal range by amending my diet (eating bananas

mostly, lots and lots of bananas). I've never taken medication for a health

problem before. A few months before my BP tested so high, I started having

vicious leg cramps, which I chalked up to low K and just ate more bananas. But

now I'm wondering...the only issue is, my Renin seems normal.

>

> My test results were:

>

> Aldosterone: 6/22 = 31 ng/dL (on Lisonopril) and 7/26 = 37 ng/dL (on

Amlodipine) ref range <=21

> Renin: 6/22 = 6/22 = 7.4 ng/dL (on Lisonopril) and 7/26 = 6.9 ng/dL (on

Amlodipine) REFERENCE VALUE -- (Peripheral vein specimen) Na-deplete, upright:

Mean: 5.9 Range: 2.9-10.8

> Potassium: 6/22 = 3.2 (on Lisonopril) and 7/26 = 3.4 (on Amlodipine)

>

> PTH Intact: 7/26 = 61 pg/ml (just this one reading from the Nephrologist)

>

> I haven't seen the Endocrinologist yet. Any advice you could give would be

much appreciated!

>