Introduction

[Guest guest]

Welcome Christie!

I learned this the hard way. Similar to you, I figured out that my

symtoms are consistent with FM and CFS, both. I did a ton of

research. When I mentioned the words " fibromyalgia " " chronic

fatigue syndrome " and/or " internet " to my doctors (I went to 6 before

someone believed me), some of them laughed, others said I was

depressed, and others totally " dissed " me and wouldn't even talk to

me. In hindsight, I believe they took it as an insult that I would

try to self-diagnose instead of letting them diagnose.

After that, I took a new approach: " Here are my symptoms. " And even

though I was armed with knowledge I'd found by doing my research, I

sat back and let the doctor do her job. Amazingly, she believed me,

and even gave me a human anatomy and physiology lesson! Most

important, she never mentioned the word depression! My new doctor is

an awesome person, and I'm lucky to have found her, but I think my

new approach had a lot to do with it.

I'm not saying you should do this. I am only sharing my personal

experience.

You are fortunate because one doctor has already mentioned FM/CFS to

you as a possibility. Definitely mention that to the new doctor, and

give that person's name as well. Do you have any printed records

indicating this possible diagnosis? If so, bring a copy with you.

Best of luck, and keep us informed as to how it goes!

K2

P.S. I have a hereditary form of anemia, so I know what you're going

through with the ulcer/anemia too.

.. She then mentioned possibly CFIS or Fibromyalgia.

> With dealing with my ulcer and trying to find a doctor who could

> treat me for that (its not a normal cut and dry case) I have pretty

> much swept everything else under the rug. Until last week I saw an

> article in a magazine about CFS and the website CFIS.org. After

> spending hours on that site and others online it was like a

> lightbulb went off..I honestly believe this is what I have.

> I see a brand new doctor in two

> weeks. I'm not sure how to approach him with this. I need to find

> out if he is one of those doctors who even takes this seriously and

> then how do i get him to diagnose it without him thinking i'm

> pushing it for personal reason.

[Guest guest]

Hi Christy and Welcome!

K2 gave you the best answer to dealing with your " next step " in

determining your best care in the future.

I did the same thing with first..developing trust in my Doctor is

dedicated to my health and best interests regarding it and then once he

referred me, I only passed on what he said and my symptoms and made

sure the new Doctor knew that we relied on him to be able to shed some

light and or treatment to my situation. It is non threatening and puts

the Doctor in the leadership role with no preconceived notions of your

diagnosing yourself but suggests a closer look is warranted.

We are here for each other, you found a great place to share. We may

not know much but can tell you our experiences that could shortcut

your progress!

God Bless!

[Guest guest]

Hi Christie:

See if you can get referred on to a Rheumotologist for a correct

diagnosis,

Jeanette

>

> Hello everyone,

> My name is Christie. I am 24 years old and live in southwest

> Florida. For the past two years I have been pretty ill...the first

> year turned out to be due to anemia and a severe bleeding gastric

> ulcer. I'm still dealing with the ulcer but have an appointment

with

> a surgeon tomorrow..However my blood counts have all been good for

> several months. Despite that I am feeling awful. I can hardly get

> out of bed..sometimes I sleep for weeks and other times I can't

> sleep at all but still can't get off the couch to do anything.

[Guest guest]

,

Thank you for sharing. It gives me hope for my four year old

(http://mrmoses.org/?page_id=9).

Best,

-Glenn

Introduction

Hello everyone~

I wanted to introduce myself. My name is Marsh and my son, ,

has right hemisphere PMG/pachygyria. is 10 years old now and in

grade 4.

I first really noticed that was having a problem about a month

before his 18 mo. check up (1998). He wouldn't reach with his left arm

or use his left hand and would draw up his left arm at times. When I

pointed this out to his Dr., she referred us to a Neuro and ordered an

MRI. It was actually 9 years ago today that I was given a mis-diagnosis

of lissencephaly. I was told that would be severely retarded, have

constant seizures, and most likely die by age three. I was more

bewildered than anything- I knew my son rather well and knew that the

Dr. was describing symptoms my son never displayed. At the time, the

only info I could find online was worst case scenario. I decided I knew

about as much about 's condition as the Neuro, and just went about

our day to day. A few months after this, we moved from North Carolina to

Nova Scotia. I did find out about Dr. Dobyns in 1999, and sent him

's MRI films. He gave me an accurate diagnosis and answered many

questions for me. So far, no one has been able to give me a prognosis

for .

Because the PMG is limited to the right hemisphere, has only

left-side weakness. He managed to be up and running at 16mos., and

developed along a fairly normal time line. began having seizures

when he was 5 1/2. They started out as tonic clonic but shifted to

simple partial and, for the most part, he only had them during sleep

times. The seizures would come in little clusters, and then he would

have none for quite awhile. I always resisted putting him on any kind of

seizure meds because the side effects sounded worse than just letting

the seizures take their course. They never lasted more than a minute or

so, and with very little exception, happened at night. Over the past few

years 's seizures started clustering (5 or 6 in a week or so), and

then he would go for 6 months with none. As of now, he's gone 9 months

without a seizure.

is almost finished grade 4 and works at or above grade level. He is

passionate about music and retro-tech, with an eclectic collection of

vinyl ranging from Clapton to Ray . He has a 16 year old

brother that he fights with most of the time, and a loving step-father

who has raised him since he was one year old.

I'm sorry this letter has been so wordy. I'm just so eager to see if

anyone out there has a child with a condition similar to 's.

Best~

Marsh

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[Guest guest]

,

My son, sounds exactly like your son . is also 10 with right

sided PMG. His first seizure was at age 5. They were mainly tonic clonics only

at night. He then developed atypical absences and CSWS. He's doing well now on

Keppra and ethosuximide. Your story about the prognosis and diagnosis is

identical to our experience. also loves music and loves to dance. He

plays baseball and loves video games. I would love to talk to you more. I've

been on this list for a long time and have never heard of a child so similar to

.

-Steve

" Marsh, Northern Phoenix Industries, Ltd. "

wrote: Hello everyone~

I wanted to introduce myself. My name is Marsh and my son, ,

has right hemisphere PMG/pachygyria. is 10 years old now and in

grade 4.

I first really noticed that was having a problem about a month

before his 18 mo. check up (1998). He wouldn't reach with his left arm

or use his left hand and would draw up his left arm at times. When I

pointed this out to his Dr., she referred us to a Neuro and ordered an

MRI. It was actually 9 years ago today that I was given a mis-diagnosis

of lissencephaly. I was told that would be severely retarded, have

constant seizures, and most likely die by age three. I was more

bewildered than anything- I knew my son rather well and knew that the

Dr. was describing symptoms my son never displayed. At the time, the

only info I could find online was worst case scenario. I decided I knew

about as much about 's condition as the Neuro, and just went about

our day to day. A few months after this, we moved from North Carolina to

Nova Scotia. I did find out about Dr. Dobyns in 1999, and sent him

's MRI films. He gave me an accurate diagnosis and answered many

questions for me. So far, no one has been able to give me a prognosis

for .

Because the PMG is limited to the right hemisphere, has only

left-side weakness. He managed to be up and running at 16mos., and

developed along a fairly normal time line. began having seizures

when he was 5 1/2. They started out as tonic clonic but shifted to

simple partial and, for the most part, he only had them during sleep

times. The seizures would come in little clusters, and then he would

have none for quite awhile. I always resisted putting him on any kind of

seizure meds because the side effects sounded worse than just letting

the seizures take their course. They never lasted more than a minute or

so, and with very little exception, happened at night. Over the past few

years 's seizures started clustering (5 or 6 in a week or so), and

then he would go for 6 months with none. As of now, he's gone 9 months

without a seizure.

is almost finished grade 4 and works at or above grade level. He is

passionate about music and retro-tech, with an eclectic collection of

vinyl ranging from Clapton to Ray . He has a 16 year old

brother that he fights with most of the time, and a loving step-father

who has raised him since he was one year old.

I'm sorry this letter has been so wordy. I'm just so eager to see if

anyone out there has a child with a condition similar to 's.

Best~

Marsh

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

hi susan-

thank you for sharing your story...very inspiring! my daughter grace is now

2 yrs old and was diagnosed after a year with unilateral (left side) pmg.

we have been to see two pediatric neurologists in nyc and dobyns in chicago

and they all have been great. from birth grace had limited movement with

her right side (mostly arm and hand) and after much pt and ot, she is using

her arm and hand very well. she is still not walking, but conitinues to

make great progress and is getting very close

she has not had any seizures, but dobyns estimates that she has a 90% chance

of developing them. mentally, socially and cognitively she is tremendous.

talks non stop and enjoys all kinds of activities.

your story makes us very hopeful and offers a lot of insight about the

seizures and controlling them. john sounds amazing and we wish you the best

of luck!

regards,

heather hamilton

>From: " Marsh, Northern Phoenix Industries, Ltd. "

>

>Reply-To: polymicrogyria

>To: polymicrogyria

>Subject: Introduction

>Date: Thu, 12 Apr 2007 21:07:01 -0300

>

>Hello everyone~

>

>I wanted to introduce myself. My name is Marsh and my son, ,

>has right hemisphere PMG/pachygyria. is 10 years old now and in

>grade 4.

>

>I first really noticed that was having a problem about a month

>before his 18 mo. check up (1998). He wouldn't reach with his left arm

>or use his left hand and would draw up his left arm at times. When I

>pointed this out to his Dr., she referred us to a Neuro and ordered an

>MRI. It was actually 9 years ago today that I was given a mis-diagnosis

>of lissencephaly. I was told that would be severely retarded, have

>constant seizures, and most likely die by age three. I was more

>bewildered than anything- I knew my son rather well and knew that the

>Dr. was describing symptoms my son never displayed. At the time, the

>only info I could find online was worst case scenario. I decided I knew

>about as much about 's condition as the Neuro, and just went about

>our day to day. A few months after this, we moved from North Carolina to

>Nova Scotia. I did find out about Dr. Dobyns in 1999, and sent him

>'s MRI films. He gave me an accurate diagnosis and answered many

>questions for me. So far, no one has been able to give me a prognosis

>for .

>

>Because the PMG is limited to the right hemisphere, has only

>left-side weakness. He managed to be up and running at 16mos., and

>developed along a fairly normal time line. began having seizures

>when he was 5 1/2. They started out as tonic clonic but shifted to

>simple partial and, for the most part, he only had them during sleep

>times. The seizures would come in little clusters, and then he would

>have none for quite awhile. I always resisted putting him on any kind of

>seizure meds because the side effects sounded worse than just letting

>the seizures take their course. They never lasted more than a minute or

>so, and with very little exception, happened at night. Over the past few

>years 's seizures started clustering (5 or 6 in a week or so), and

>then he would go for 6 months with none. As of now, he's gone 9 months

>without a seizure.

>

> is almost finished grade 4 and works at or above grade level. He is

>passionate about music and retro-tech, with an eclectic collection of

>vinyl ranging from Clapton to Ray . He has a 16 year old

>brother that he fights with most of the time, and a loving step-father

>who has raised him since he was one year old.

>

>I'm sorry this letter has been so wordy. I'm just so eager to see if

>anyone out there has a child with a condition similar to 's.

>

>Best~

>

> Marsh

_________________________________________________________________

MSN is giving away a trip to Vegas to see Elton .  Enter to win today.

http://msnconcertcontest.com?icid-nceltontagline

[Guest guest]

In Michigan you must own shares of the herd, i.e. cowshares, goatshares, ect. to obtain milk. So you would have to sell shares in your herd.

a

(Michigan)

Introduction

Hello everyone,My name is Greg, I'm from New Troy Michigan, it's inthe very SW corner of the state. I currently have 5Nubian Goats. I'm milking two and I am enjoying thefresh milk. To the best of my knowledge the only wayfor someone to obtain fresh milk in Michigan is byowning the the producing animal. I believe milk shareswork, but I'm not sure. My stepson is allergic to cowand soy milk, but not goat milk or rice milk. Hedislikes rice milk and enjoys goat milk.Since hestarted drinking fresh milk his digestive system hasbecome much more regular, which was a problem before.I'd like to share with others but I am unsure as tohow to do that in Michigan.Thank you,Greg__________________________________________________

[Guest guest]

Are there share templates available to use? When

someone purchases a share are they purchaseing a % of

output of a specific animal or per gallon per week

Greg

--- TealCamaroGirl wrote:

> In Michigan you must own shares of the herd, i.e.

> cowshares, goatshares, ect. to obtain milk. So you

> would have to sell shares in your herd.

>

> a

> (Michigan)

>

>

> Introduction

>

>

> Hello everyone,

>

> My name is Greg, I'm from New Troy Michigan, it's

> in

> the very SW corner of the state. I currently have

> 5

> Nubian Goats. I'm milking two and I am enjoying

> the

> fresh milk. To the best of my knowledge the only

> way

> for someone to obtain fresh milk in Michigan is by

> owning the the producing animal. I believe milk

> shares

> work, but I'm not sure. My stepson is allergic to

> cow

> and soy milk, but not goat milk or rice milk. He

> dislikes rice milk and enjoys goat milk.Since he

> started drinking fresh milk his digestive system

> has

> become much more regular, which was a problem

> before.

> I'd like to share with others but I am unsure as

> to

> how to do that in Michigan.

>

> Thank you,

> Greg

>

> __________________________________________________

>

[Guest guest]

Most of what I have seen is a full share is two gallons per week with boarding around $40-50 per month. So for that boarding/feeding fee that you charge them to take care of their share of your herd, they will receive two free gallons of milk per week. Half a shareis one gallon per week, and so forth. You can check out the Weston Price website, they may have forms. I wouldn't suggest you do this without some heavy research in how to protect your customers and yourself. Laws are different everywhere.

a

Introduction> > > Hello everyone,> > My name is Greg, I'm from New Troy Michigan, it's> in> the very SW corner of the state. I currently have> 5> Nubian Goats. I'm milking two and I am enjoying> the> fresh milk. To the best of my knowledge the only> way> for someone to obtain fresh milk in Michigan is by> owning the the producing animal. I believe milk> shares> work, but I'm not sure. My stepson is allergic to> cow> and soy milk, but not goat milk or rice milk. He> dislikes rice milk and enjoys goat milk.Since he> started drinking fresh milk his digestive system> has> become much more regular, which was a problem> before.> I'd like to share with others but I am unsure as> to> how to do that in Michigan.> > Thank you,> Greg> > __________________________________________________>

[Guest guest]

Hey Laury , I am in Jefferson county NY . I raise Saanens and every once in a while they get out but not on a reg. basis . Email me and maybe I can help with fencing ideas.

Patty

forbesfarm@...

Introduction

Hi Everyone,I am new to your group. I live in SW New York Stae. I stumbled across someone who knew an organic dairy farmer selling raw milk. I also read something by the Weston Price Foundation, so I now buy raw milk when I can, my family loves it. It is the only milk that I feel comfortable drinking. I guess my current interest is to find a way to produce our own raw milk, from a goat or sheep, most likely. As buying it is too costly for us most of the time, at least at present, and I do have sheep. I had a goat, and did not like the experience, she kept getting out, but I am not ready to condemn all goats on the basis of one! lol I love my sheep, so I guess I'm here to gain information, basically, inspiration, maybe connections. I have also joined the sheep dairy group. I would like to learn more about making cheese and other dairy products also.

[Guest guest]

Hey Laury , I am in Jefferson county NY . I raise Saanens and every once in a while they get out but not on a reg. basis . Email me and maybe I can help with fencing ideas.

Patty

forbesfarm@...

Introduction

Hi Everyone,I am new to your group. I live in SW New York Stae. I stumbled across someone who knew an organic dairy farmer selling raw milk. I also read something by the Weston Price Foundation, so I now buy raw milk when I can, my family loves it. It is the only milk that I feel comfortable drinking. I guess my current interest is to find a way to produce our own raw milk, from a goat or sheep, most likely. As buying it is too costly for us most of the time, at least at present, and I do have sheep. I had a goat, and did not like the experience, she kept getting out, but I am not ready to condemn all goats on the basis of one! lol I love my sheep, so I guess I'm here to gain information, basically, inspiration, maybe connections. I have also joined the sheep dairy group. I would like to learn more about making cheese and other dairy products also.

[Guest guest]

Hey Laury , I am in Jefferson county NY . I raise Saanens and every once in a while they get out but not on a reg. basis . Email me and maybe I can help with fencing ideas.

Patty

forbesfarm@...

Introduction

Hi Everyone,I am new to your group. I live in SW New York Stae. I stumbled across someone who knew an organic dairy farmer selling raw milk. I also read something by the Weston Price Foundation, so I now buy raw milk when I can, my family loves it. It is the only milk that I feel comfortable drinking. I guess my current interest is to find a way to produce our own raw milk, from a goat or sheep, most likely. As buying it is too costly for us most of the time, at least at present, and I do have sheep. I had a goat, and did not like the experience, she kept getting out, but I am not ready to condemn all goats on the basis of one! lol I love my sheep, so I guess I'm here to gain information, basically, inspiration, maybe connections. I have also joined the sheep dairy group. I would like to learn more about making cheese and other dairy products also.

[Guest guest]

Don't get discouraged, . I've had asthma for 58 years. I'm

still here. Don't be afraid to exercise. I have exercise-induced

asthma but I took up horseback riding when I was in my mid-30s. At

first, I could only ride for about 10 minutes without having to use my

emergency inhaler (I made my own pouch to attach to the saddle). After

a few months I was riding for two hours at a time without getting out

of breath. Swimming is also good. Just do it at your own pace--but

work to build your lung capacity.

One aspect about asthma, based on my experience (and I've been flamed

here for expressing my opinion so I rarely contribute), is that an

attack brings on its own anxiety, which can make the attack worse. If

you get an attack, do everything you can to relax and to reassure

yourself that you'll come out of it. As you mentioned, you can start

feeling when an attack is coming on and that's a big help. Wish you

all good luck. I know a lot of women who get asthma later in life.

(not saying you're OLD!!) Maybe " maturity " is a better word lol

--marty

> I thought I would take a moment to introduce myself since I am new

> to the list and to asthma. My name is and I am a 38 yo stay

> at home mom. I was recently diagnosed with severe asthma.

>

> At the end of last July I had what I thought was a cold that went to

> my chest. After coughing like crazy for a week I finally made an

> appointment with my family physician. She was not in that day but

> had a loccum and he diagnosed me with bronchitis (I had no history

> of asthma so that seemed like a good diagnosis at the time). I was

> given steriods and antibiotics and I seemed to get sort of better

> but still did not have all my energy back. In November my Dr. put

> me on a Beta Blocker for High blood pressure. Since I had no

> history of asthma we figured it would be okay to take. On a Friday

> (right after starting the Beta Blocker) I seemed to have a more

> difficult time breathing but I figured it would go away. Saturday

> morning I was worse. I had to get my husband to take me to the

> emergency room. I was given a breathing treatment, steriods and

> antibiotics. I asked the ER Dr. if she thought the Beta Blocker

> could have caused the problem and she did not think so since I had

> no history of asthma. Saturday night I was fine, Sunday I was fine,

> Monday I made a follow up appointment with my family Dr. (I could

> not get in until Thursday). By Monday evening I was having a very

> hard time breathing. I called my family Dr. and she told me to go

> to the ER. Again since I had no history of asthma she was thinking

> that I might be having cardiac problems that were causing the

> breathing problems. The ER doctor I saw this time told me to quit

> taking the Beta Blocker, gave me another breathing treatment, gave

> me additional antibiotics, and wrote an order for me to get a

> nebulizer. He almost put me in the hospital, he used the term

> outpaitient failure. But since I had an appointment with my family

> Dr. he did not. I was fine Tuesday but by Wednesday I was feeling

> bad again. I did not want to go to the ER because I did not want to

> be admitted into the hospital and I also had an appointment with my

> dr. the next day. By Thursday I was bad. My husband drove me to

> the dr. and she took one look at me and said I had to be admitted

> into the hospital. In the hospital I was given breathing

> treatments, iv steriods and iv antibiotics. I had an echocardiogram

> done to make sure it was not congestive heart failure. While I was

> in the hospital I encountered a problem. I have restless leg

> syndrome (RLS). Badically in people where RLS is inherited and not

> due to some type of injury, it is a dopamine issue (similar to

> parkinson's disease) where our brains have an inbalance of dopamine

> and it causes some pretty awful sensations in our bodies.

> Antihistamines, and many of the astham medications make RLS

> signifanctly worse. So all the stuff they were giving me in the

> hospital was causing my RLS to be out of control and since the

> pulmonologist that saw me in the hospital was not familiar with RLS

> he would not up my RLS meds. So my husband had to sneak in my

> prescription so I could do it myself. When I left the hospital I

> was given prescriptions for more steriods, singular, pepcid,

> prontonix, and advair. After I got out of the hospital I made an

> appointment with a pulmonologist that sees my father, grandmother

> and mother. He treats my mother for her RLS because he is very

> familiar with it. So he wrote me a perscription for a higher dose

> of my RLS medication. He also took me off of advair. All those not

> likely but possible reactions to advair that are listed, I had

> those. I was shaking like a little old lady, my migraines were way

> worse, my vision was blurry, cramps in the strangest places,

> swelling, and I could not concentrate. So he has me on asmenex now

> and has changed all my rescue inhalers to a none albytural

> medication. He had me do a sleep study because he thought I had

> sleep apnea and apparantly the changes in breathing caused my sleep

> apnea can trigger ashtma attacks. I have to go for another one

> tonight because the results on my first one were inconclusive and I

> never reached a deep sleep. So of course everytime I go I have to

> do the breathing tests and he has been tracking me. He now believes

> that I have probably always have had mild asthma but it was never

> diagnosed. That when I was younger and I would get bronchitis that

> is was more likely an asthma attack but since I had no medical

> history it was treated like bronchitis and because I was given

> steriods and the attacks were mild that it caused the asthma attack

> to go away. He has now diagnosed me with severe asthma.

>

> I have to admit that I was angry and depressed when all of this

> started and I found out that I had asthma. Quite frankly it sucks

> having to take all this medicine, it sucks to have to remember to

> carry a rescue inhaler with me everywhere, and I really think it

> sucks when I have an asthma attack and I feel like I can not

> breathe. But I am feeling better about it now. I think because I

> am getting used to the routine and now I can recognize an asthma

> attack before it gets too bad I feel a little more in control. Also

> the last time I went to the pulmonoligist he said my breathing was

> better and that he plans on reducing my asmenex dose in about six

> months to a maintenance dose (right now I am on a very high dose of

> asmenex). So the good news helped me feel better. But having

> severe asthma has changed my life. I like to hike and a group of my

> friends and I were planning a ten mile hike that I do not feel I can

> do now because I am afraid I will have an asthma attack in the

> middle of the woods and if it is too bad for the rescue inhaler to

> tackle then I worry about how I am going to get medical help in

> time. There are other impacts to my life as well. I am still

> trying to get used to these changes.

>

> I guess this post is long enough now. I am looking forward to

> learning alot from ya'll on this list and I am curious about other

> people who are in my position of being newly diagnosed and how they

> have coped with the lifestyle changes.

>

>

>

>

[Guest guest]

Hi ,

Welcome to the group!

Alana

>

> I thought I would take a moment to introduce myself since I am new

> to the list and to asthma. My name is and I am a 38 yo

stay

> at home mom. I was recently diagnosed with severe asthma.

>

> At the end of last July I had what I thought was a cold that went

to

> my chest. After coughing like crazy for a week I finally made an

> appointment with my family physician. She was not in that day but

> had a loccum and he diagnosed me with bronchitis (I had no history

> of asthma so that seemed like a good diagnosis at the time). I was

> given steriods and antibiotics and I seemed to get sort of better

> but still did not have all my energy back. In November my Dr. put

> me on a Beta Blocker for High blood pressure. Since I had no

> history of asthma we figured it would be okay to take. On a Friday

> (right after starting the Beta Blocker) I seemed to have a more

> difficult time breathing but I figured it would go away. Saturday

> morning I was worse. I had to get my husband to take me to the

> emergency room. I was given a breathing treatment, steriods and

> antibiotics. I asked the ER Dr. if she thought the Beta Blocker

> could have caused the problem and she did not think so since I had

> no history of asthma. Saturday night I was fine, Sunday I was

fine,

> Monday I made a follow up appointment with my family Dr. (I could

> not get in until Thursday). By Monday evening I was having a very

> hard time breathing. I called my family Dr. and she told me to go

> to the ER. Again since I had no history of asthma she was thinking

> that I might be having cardiac problems that were causing the

> breathing problems. The ER doctor I saw this time told me to quit

> taking the Beta Blocker, gave me another breathing treatment, gave

> me additional antibiotics, and wrote an order for me to get a

> nebulizer. He almost put me in the hospital, he used the term

> outpaitient failure. But since I had an appointment with my family

> Dr. he did not. I was fine Tuesday but by Wednesday I was feeling

> bad again. I did not want to go to the ER because I did not want

to

> be admitted into the hospital and I also had an appointment with my

> dr. the next day. By Thursday I was bad. My husband drove me to

> the dr. and she took one look at me and said I had to be admitted

> into the hospital. In the hospital I was given breathing

> treatments, iv steriods and iv antibiotics. I had an

echocardiogram

> done to make sure it was not congestive heart failure. While I was

> in the hospital I encountered a problem. I have restless leg

> syndrome (RLS). Badically in people where RLS is inherited and not

> due to some type of injury, it is a dopamine issue (similar to

> parkinson's disease) where our brains have an inbalance of dopamine

> and it causes some pretty awful sensations in our bodies.

> Antihistamines, and many of the astham medications make RLS

> signifanctly worse. So all the stuff they were giving me in the

> hospital was causing my RLS to be out of control and since the

> pulmonologist that saw me in the hospital was not familiar with RLS

> he would not up my RLS meds. So my husband had to sneak in my

> prescription so I could do it myself. When I left the hospital I

> was given prescriptions for more steriods, singular, pepcid,

> prontonix, and advair. After I got out of the hospital I made an

> appointment with a pulmonologist that sees my father, grandmother

> and mother. He treats my mother for her RLS because he is very

> familiar with it. So he wrote me a perscription for a higher dose

> of my RLS medication. He also took me off of advair. All those

not

> likely but possible reactions to advair that are listed, I had

> those. I was shaking like a little old lady, my migraines were way

> worse, my vision was blurry, cramps in the strangest places,

> swelling, and I could not concentrate. So he has me on asmenex

now

> and has changed all my rescue inhalers to a none albytural

> medication. He had me do a sleep study because he thought I had

> sleep apnea and apparantly the changes in breathing caused my sleep

> apnea can trigger ashtma attacks. I have to go for another one

> tonight because the results on my first one were inconclusive and I

> never reached a deep sleep. So of course everytime I go I have to

> do the breathing tests and he has been tracking me. He now

believes

> that I have probably always have had mild asthma but it was never

> diagnosed. That when I was younger and I would get bronchitis that

> is was more likely an asthma attack but since I had no medical

> history it was treated like bronchitis and because I was given

> steriods and the attacks were mild that it caused the asthma attack

> to go away. He has now diagnosed me with severe asthma.

>

> I have to admit that I was angry and depressed when all of this

> started and I found out that I had asthma. Quite frankly it sucks

> having to take all this medicine, it sucks to have to remember to

> carry a rescue inhaler with me everywhere, and I really think it

> sucks when I have an asthma attack and I feel like I can not

> breathe. But I am feeling better about it now. I think because I

> am getting used to the routine and now I can recognize an asthma

> attack before it gets too bad I feel a little more in control. Also

> the last time I went to the pulmonoligist he said my breathing was

> better and that he plans on reducing my asmenex dose in about six

> months to a maintenance dose (right now I am on a very high dose of

> asmenex). So the good news helped me feel better. But having

> severe asthma has changed my life. I like to hike and a group of

my

> friends and I were planning a ten mile hike that I do not feel I

can

> do now because I am afraid I will have an asthma attack in the

> middle of the woods and if it is too bad for the rescue inhaler to

> tackle then I worry about how I am going to get medical help in

> time. There are other impacts to my life as well. I am still

> trying to get used to these changes.

>

> I guess this post is long enough now. I am looking forward to

> learning alot from ya'll on this list and I am curious about other

> people who are in my position of being newly diagnosed and how they

> have coped with the lifestyle changes.

>

>

>

[Guest guest]

Dear ,

Hi, I am a mum 48 years old, mother of 3, grandmother of 2. yo yo dieter for 25 years blah blah blah and that is history.

I was recently banded 2 weeks ago to be precise.

I would like to welcome you to our list which I'm sure you will find informative inspiring and really supportive in your lapband journey.

I chose my doctor by searching google for lapband surgery Sydney - it came up with a few centres and surgeons.

I rang a few that were close to me and attended an info evening at SIOS (Sydney Obesity Institute Obesity Surgery). I was very impressed with the team at the centre.

I then decided that was what I wanted from surgery and after banding care - which is really important.

As I see before I was banded 2 weeks back and now starts my journey. In the last 4 weeks I have lost 16 kilos so I am really wrapped.

All the best in your journey to a healthier happier YOU.

regards and best wishes.

UmmAleah

Introduction

Funnily enough my introduction to lapband surgery was because of the article on news.com. I hadn't really heard of it before but thought it sounds like it might be suitable for me. I am 147 and have done the infamous yo yo'ing for about 25 years from 110 to about 150. Great reading about the surgeries and associated good and bad parts. Just curious how did you find your doctors? I do have a gp who I will be discussing with her sometime I hope this week, as I have read you need a referral, about being referred not sure if she will have a specialist in mind. I dont have much contact with my gp as I am fortunate not to have issues associated with my obesity.Thanks.. and I do hope to go to some of the functions, with old bras and clothes and in hand... also like another person, lots still with tags on themregards oh yes on the intro part, married, 47 ,works.. umm one child who is never going to leave home I think he is far too spoilt at 24

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.3/1306 - Release Date: 3/1/2008 5:41 PM

[Guest guest]

Hi Kylie,

It is such a big step on deciding to get a band. I am 28 and have

been banded for just over 6 months and I am so happy I made the

decision now and not later.

I think in terms of surgeons you have to go with the one you are most

comfortable with.

I look ofrward to getting to knwo you better

>

> Hi Everyone

>

> Im new to the group.

> Im 24 and am on the job of sorting out the steps to get the banding.

> I have attended Sydney Private and the Hills Private info nights.

> The only difference I can see is price and the hills x ray and

sydney doesnt.

>

> Could I please have some feedback as to where people have gone and

their experiences?

>

> Many thanks in advance

>

> Kylie xox

>

>

>

______________________________________________________________________

______________

> OMG, Sweet deal for Yahoo! users/friends:Get A Month of Blockbuster

Total Access, No Cost. W00t

> http://tc.deals.yahoo.com/tc/blockbuster/text2.com

>

[Guest guest]

Hi Kylie,

I was banded 2 weeks ago at the Hills Private by Dr Roy

Brancatisano. I am having my first appointment with the dietician

tomorrow and have other appointments booked. The Circle of Care

program is not the cheapest but they are very professional and

certainly seem to cover off all areas.

I am so excited I am going onto mushies tomorrow! Sad isn't it.

Welcome and hope to hear more of your journey as you progress.

Sharon

>

> Hi Everyone

>

> Im new to the group.

> Im 24 and am on the job of sorting out the steps to get the banding.

> I have attended Sydney Private and the Hills Private info nights.

> The only difference I can see is price and the hills x ray and

sydney doesnt.

>

> Could I please have some feedback as to where people have gone and

their experiences?

>

> Many thanks in advance

>

> Kylie xox

>

>

>

______________________________________________________________________

______________

> OMG, Sweet deal for Yahoo! users/friends:Get A Month of Blockbuster

Total Access, No Cost. W00t

> http://tc.deals.yahoo.com/tc/blockbuster/text2.com

>

[Guest guest]

Hi Sharon

Thanks for the feedback re Dr B.

How are you going after having the band?

I understand when they put it in they initially dont have any fill?

The Sydney private said they fill some first time although Dr B said he doesnt.

Do you still have the full feeling even though no saline is in yet?

Would love to hear your feedback and good luck with the dietician tomorrow

Kylie

Re: Introduction

Hi Kylie,I was banded 2 weeks ago at the Hills Private by Dr Roy Brancatisano. I am having my first appointment with the dietician tomorrow and have other appointments booked. The Circle of Care program is not the cheapest but they are very professional and certainly seem to cover off all areas.I am so excited I am going onto mushies tomorrow! Sad isn't it.Welcome and hope to hear more of your journey as you progress.Sharon>> Hi Everyone> > Im new to the group.> Im 24 and am on the job of sorting out the steps to get the banding.> I have attended Sydney Private and the Hills Private info nights.> The only difference I can see is price and the hills x ray and

sydney doesnt.> > Could I please have some feedback as to where people have gone and their experiences?> > Many thanks in advance > > Kylie xox> > > ____________ _________ _________ _________ _________ _________ _____________ __> OMG, Sweet deal for Yahoo! users/friends: Get A Month of Blockbuster Total Access, No Cost. W00t > http://tc.deals. yahoo.com/ tc/blockbuster/ text2.com>

Special deal for Yahoo! users friends - No Cost. Get a month of Blockbuster Total Access now

[Guest guest]

----- Forwarded Message ----

To: Autism_in_Girls-owner

Sent: Friday, April 25, 2008 3:06:23 PM

Subject: Introduction

Hello,

I have posted once and recently joined, but never introduced myself.

I am Angie, mom to 2 kids in a suburb of St. , Minnesota. Kaylin is 4

and is " autistic-like " on the E2 scale, and Nate is 16 months and about as

typical of a baby brother you can imagine (yes, they already drive each other

crazy and love each other to death at the same time).

Kaylin is currently in a ECSE (early childhood special education)

pre-school through our school district that is awesome and is now taking a

little break from speech therapy. Her main struggle is speech. She

has a great vocabulary but the way she puts her words together is unique.

She is improving greatly, and is a motor mouth, so it must be all of the

practice!

I have tried the GFCF diet but had seen a DAN doctor I wasn't fond of

(to put it mildly) and became very frustrated and decided to try at a different

time, maybe I will try again when school is out.

Thank you for listening all, and I look forward to talking to you

all.

Angie

Need a new ride? Check out the largest site for U.S. used car listings at AOL

Autos.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hey Jen, welcome to the group!

[Guest guest]

HI Jen

I am Tony live in the uk with my two daughters aged 8 years and almost two

years. Grace is a fun loving lively girl who has recently been diagnosed with

autism and associated learning disability.

Grace was also premature but only 7 weeks.

Hope you enjoy the group

Tony

[Guest guest]

Hi Jen!

My daughter Allie is 12, almost 13. I can tell Allie is in the early stages

of puberty.

As Bette once said in All About Eve, " Fasten your seat belts ... " LOL

Welcome to the group, it's good to have you with us!

Sandi

Houston, TX

In a message dated 5/11/2008 12:20:31 P.M. Central Daylight Time,

jen@... writes:

Hi there- I've just joined this group, and from browsing through past

messages it looks like giving an introduction is a good idea.

I have 12 year old triplets who are all diagnosed autistic- 2 girls and

one boy. We were lucky enough that since they were born prematurely we

were in contact with developmental specialists since they were born, so

we found out early and were able to get them into " intervention " at 20

months of age. We cover the entire spectrum in our house, and we've had

a lot of experience with different therapies/theories etc. One of my

daughters is fully integrated in grade 7 at the moment, and few people

know that she is on the spectrum although as we near puberty we are now

finding out that her autism manifests itself in weird and wonderful

ways. I have another daughter in a self-contained special ed class who

is doing incredibly well and is a joy to be around, a my son is living

in a group home near us because of his extreme aggression and

self-injury which means that he needs more than one-on-one care, but I

am still fully integrated in his care and life and we see him as often

as we can. All of my children are absolutely wonderful (of course), and

except for the difficulties that they face I wouldn't change anything

about them. I've had lots of experience with advocacy and changing laws

etc., and did support work for multiple birth families with special

needs for a number of years before I burned out on it :-)

My kids are amazing (as I know everyone else's are). I'm thrilled to

find this group as there seem to be so few people with daughters with

autism who want to talk about it, and I want to help them navigate their

lives as best as I can. We're right into pre-puberty now, so I find it

especially helpful to talk to other families with autistic daughters.

We're also starting to set up adult programs and living situations for 2

of my kids, so it's always good to talk to other people and see what's

out there.

I live in Ontario, I was a single mom for a very long time which was

relatively challenging, but I'm getting married again as soon as my

husband's immigration to Canada is complete within a month or two. It

sure is easier helping the kids when there are 2 people around, aside

from the benefits of just having a partner :-) I tend to fall into the

" neurodiversity " camp as I don't think that my kids need to be " cured "

of anything- I want to do everything that I can do make my kids' lives

as fulfilling and happy as possible, and I've been lucky to have " met "

enough autistic adults to know that that is possible. My kids might be

different, but they're definitely not " bad " , or " disappointing " different

recognize that we've been doing this long enough to realize that not

everyone feels the same way :-) And I do get bitchy and frustrated

just the same as everyone else lol

My girls both have lung problems as well, and one had cancer (she's fine

now), so I've got a pile of info on taking special needs kids to the

hospital if you ever need it.

Right now we're mainly dealing with puberty issues for the girls. One

daughter doesn't want to get her period as that means that she's going

to grow up and eventually die, and the other daughter is extremely

socially awkward in some ways and feels that she's years behind her

peers. It's great to find a group that has discussion about the issues

that female autistics face, as I'm feeling kind of at a loss at the

moment. There is so little information on sex ed and puberty as it

relates to autistic females out there, so I'm hoping that people can

either give me some advice or at least sympathize.

Happy Mother's Day everyone, and thanks for letting me join your group :-)

Jen

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Welcome.

My daughter is 12 going on 3 and 30 at the same time. lol

TJ

> HI Jen

>

> I am Tony live in the uk with my two daughters aged 8 years and almost two

>

> years. Grace is a fun loving lively girl who has recently been diagnosed

> with

> autism and associated learning disability.

>

> Grace was also premature but only 7 weeks.

>

> Hope you enjoy the group

>

> Tony

>

>

>

>

[Guest guest]

Ok, Amber, sounds like you have your hands full with that little one of yours. I was recently put on Symbicort 160 and have found amazing relief, Singular is another good one, I have found Xyzal to give me more relief than over the counter allergy meds, I haven't been back to the GI dr as I'm due to be scoped again in October so I'm waiting till then. As for the nasal polyps I have those too, I find Nasonex works wonders for that, They say to use it once a day, my allergies right now are so bad I use it once in the am and once in the pm before I go to bed. Xopenex is great for the nebulizer machine. I have 8 boxes I'm looking to get rid of, I don't have a need for it all as my "Cocktail" is working well for me. Keep asking your dr's more and more questions and be persistent about what's working and what's not, and demand that they find something that works for your child. We're here if you need anything

Terry I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teddy Bear's Early Learning ProgramEstablished August of 1992

From: asthma [mailto:asthma ] On Behalf Of bakerfam01Sent: Monday, May 19, 2008 8:24 AMTo: asthma Subject: introduction

Hello all, my name is Amber, I am momma to Noah, Gracie, Emma and Caleb. The first three have asthma to some degree. Emma only in reaction to allergens such as hay. Gracie, we just recently adopted and are just getting started on this path. She has many congenital anomalies, including a major heart defect. Noah, is who brought me here. He is 7 yr soon to be 8, he is extremely active and has always been our smallest child. Although he had the largest birth wt. soon after he seemed to thin out an stay that way. He was diagnosed with asthma at the age of 4, starting with an Albuterol inhaler, which brought no relief. Over the last couple of years we feel like we have lived at the Pediatricians office. They switched him to a daily inhaler, Flovent and Xopenex Q 4 PRN. In the past year he had bacterial pneumonia twice and after the second bout we were referred to a ped pulm. He was sweat tested for Cystic Fibrosis, results were border line. He was DNA tested almost 3 weeks ago and the results are not yet in. He was also allergy tested and we have made changes in our home to accomodate those. He has been put on quite a few meds. : Symbicort, Singulair, Clarinex, Prevacid, and Xopenex. He also has an emergency inhaler, which does not offer much relief. I'm a bit concerned. Even after starting these meds he is having "flare ups" monthly. Is it typical to take some time to get the right "cocktail" of meds to make a difference. He also has nasal polyps, any of your thoughts would be much appreciated. Thanks! amber

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[Guest guest]

Welcome. It sucks having kids with these issues. I can hear my 8

year old DD down stairs sneezing her head off as I type this.

catelyn

>

> Hello all, my name is Amber, I am momma to Noah, Gracie, Emma and

> Caleb. The first three have asthma to some degree. Emma only in

> reaction to allergens such as hay. Gracie, we just recently adopted

> and are just getting started on this path. She has many congenital

> anomalies, including a major heart defect. Noah, is who brought me

> here. He is 7 yr soon to be 8, he is extremely active and has

always

> been our smallest child. Although he had the largest birth wt. soon

> after he seemed to thin out an stay that way. He was diagnosed with

> asthma at the age of 4, starting with an Albuterol inhaler, which

> brought no relief. Over the last couple of years we feel like we

have

> lived at the Pediatricians office. They switched him to a daily

> inhaler, Flovent and Xopenex Q 4 PRN. In the past year he had

> bacterial pneumonia twice and after the second bout we were

referred

> to a ped pulm. He was sweat tested for Cystic Fibrosis, results

were

> border line. He was DNA tested almost 3 weeks ago and the results

are

> not yet in. He was also allergy tested and we have made changes in

> our home to accomodate those. He has been put on quite a few

meds. :

> Symbicort, Singulair, Clarinex, Prevacid, and Xopenex. He also has

an

> emergency inhaler, which does not offer much relief. I'm a bit

> concerned. Even after starting these meds he is having " flare ups "

> monthly. Is it typical to take some time to get the

right " cocktail "

> of meds to make a difference. He also has nasal polyps, any of your

> thoughts would be much appreciated. Thanks! amber

>