New to the group

[Guest guest]

In a message dated 8/1/01 8:31:30 PM Pacific Daylight Time, jasidan@...

writes:

<<

I was wondering if anyone gets migraine headaches and then their

vision goes blurry to the point that you can only see light, and not

be able to make out anything else? I should mention that I had my

fi >>

Hi le, so glad to have you in the group.... i guess you can see by our

posts that there are alot of informed people.... You just keep asking

questions and you will be headed in the right direction.

I'm so sorry that your dr isn't understanding.. I think we have all been

there and it took me along time to fine the right dr. No one understands

and they make you feel like you are nuts.

I do get the bright lights in my eyes.. The opthamologist told me they were

optic migrains... Boy they are terrible..Sometimes I dont get the headaches

with them, but boy the lights will make you crazy... I had a few hit me when

I was driving...

Pulled over and waited one out in a book store. LOL Couldn't read a thing,

couldn't see. LOL great place to be huh??? boy did I feel stupid...

Again welcome to the best group in the world.. Thanks for telling us about

yourself.. Can't wait to get to know you better... I am 49 and live in

Calif... Have 3 daughters and a grandaughter.. Have been dx with Rp for

almost 3 years.. Most of my RP is in my ears, ribs, nose. Has your dr

mentioned going on methotrexate, dapson or Imuran or another drug plus pred.?

All I can say is print off all the info you can and take it to him... if he

won't listen.... look for another dr... Is he a rheumy?

Now that I've written a novel, I will go... Please keep posting and let us

know how you are doing... We have lots of shoulders here.

hugs

[Guest guest]

le,

Welcome to the group! So glad you found us and so sorry that you

have RP. You will find that this is the greatest group of people

that you will ever have the opportunity to meet! They are always

there when you want to blow off a little steam. Cry or we also like

to just cut up! Don't be afraid to post just jump right in.

Wow it sounds like you have had a fairly busy life or a big move in

it anyway. Sorry that you were not diagnose sooner. That seems to

be the norm with this darn disease. HOpe things start going a little

easier now that they know what it is that is causing you all the

problems.

My name is Glenda. I am 44 yrs old and have had RP for 8 yrs. I

live in Oregon. I am happily married to the same man for almost 27

yrs. Well as happy as you can be with a husband as fruity as mine!LOL

We have raise two children and are raising our now 6 year old

granddaughter. There is never a dull moment around here that is for

sure.

I work a 40+ hour a week job and lead a fairly normal life as normal

as I can anyway!LOL RP is not the only thing in my life and I hope

to keep it where it belongs! QUIET!

Take care and hope to get to know more about you!

Lots of love

Glenda

> Hello,

>

> My name is le, I am 30yrs old, and was diagnosed with rp about

> 6 months ago, since I have had symptoms since the age of 13, for me

> this was a long time coming, and almost welcome in a way, as I was

> tired of being told I was being hormonal! Imagine, you are in the

> hospital with swollen, red ears, and you are hormonal!!!

>

> I moved to Albuquerque almost 2 yrs ago, having lived in Bermuda

(my

> native country), Jamaica and England.

[Guest guest]

le,

Let me know if you need up to date info to take to that quack, or better yet, find a new Rheumy and ask before making the appointment if this doctor is familiar with RP.

No one should have to put up with ignorant doctors.

Also, someone wrote in about their doctor doing labs on them and they all came back normal.

A lot of people here have always had a normal sed rate, even during a very bad flare of RP. I am one of them.

There is no blood test that diagnoses RP. Make sure your doctor knows this.

Let me know if you need info on RP and welcome to our wonderful family.

W

>>>>>>>>>>>>>>>>>>>>>>>>

I have been so scared the last 2 years, since I moved to albuquerque, as my symptoms have been so bad, and the doctor said all he will dois treat me when I get a flare up, and my case seems so mild to him.It's funny, you just want to slap the doctor when he says that, as heisn't the one in pain, and it is very irritating to hear him tell you that your pain and discomfort are mild, especially when they sure don't feel that way.

[Guest guest]

Hi ,

My husband was getting frustrated with me being sick all the time and

he told me to email Dr. Trentham and ask him what he thought, as my

doctor didn't seem to think I can be treated at all. Hubby figured it

couldn't hurt, and we both disagreed with my doctor that my case is

mild. Dr. Trentham emailed me back, and said he recommends me going to

Boston to see him. He said my age (30 yrs) and the fact I don't sound

like a mild case to him, concern him. So.. hubby and I are trying to

figure out when we can do this.

I was actually wondering if anyone had seen Dr. Trentham. and if they

have any idea how long I may be there. I have called the office, but

am waiting for them to call back.

I was also going to ask if any of the female members have any hormonal

problems as well. I have also been diagnosed with Polycystic Ovary

Syndrome, but my gyno doesn't think either disease affects the other,

but I am currently on Promera (sp?) to correct it, and my ears have

been flaring up alot, my neck hurts, my ankles and knees are creaking

in ways I didn't know was possible, not to mention terrible mygraine

headaches, and ohhhh boy.. did I mention mood swings??? LOL

I can't tell everyone how much better I feel since I have been reading

the posts. Just a couple a days ago I was so down, and didn't know

what to think or what to feel. For the first time, I feel so great to

know that I can say how I feel, and someone will understand, and I

mean really understand. I have told some friends about the rp, and

they give me blank looks and don't understand how serious this is, and

it can make you feel soooo alone.

Thank you for being here and understanding

le

[Guest guest]

le,

I think Hormones has a lot to do with RP. I have had

RP for over 8 yrs. The first few yrs I was a real

mess. I then started having female Problems. I had a

hysterecomy in 94 at the age of 38. My drs. had me

trying everything to get the hormones straightened out

and only made it worse. I still have my ovaries so I

don't have to take any meds and soon after the

hysterectomy everything settled down even the RP.

As they say we are all different but I do beleive that

hormones play a big factor in some cases of RP.

Hope all starts working out better for you and soon.

Lots of Love

Glenda

--- jasidan@... wrote:

> Hi ,

>

> My husband was getting frustrated with me being sick

> all the time and

> he told me to email Dr. Trentham and ask him what he

> thought, as my

> doctor didn't seem to think I can be treated at all.

> Hubby figured it

> couldn't hurt, and we both disagreed with my doctor

> that my case is

> mild. Dr. Trentham emailed me back, and said he

> recommends me going to

> Boston to see him. He said my age (30 yrs) and the

> fact I don't sound

> like a mild case to him, concern him. So.. hubby and

> I are trying to

> figure out when we can do this.

>

> I was actually wondering if anyone had seen Dr.

> Trentham. and if they

> have any idea how long I may be there. I have called

> the office, but

> am waiting for them to call back.

>

> I was also going to ask if any of the female members

> have any hormonal

> problems as well. I have also been diagnosed with

> Polycystic Ovary

> Syndrome, but my gyno doesn't think either disease

> affects the other,

> but I am currently on Promera (sp?) to correct it,

> and my ears have

> been flaring up alot, my neck hurts, my ankles and

> knees are creaking

> in ways I didn't know was possible, not to mention

> terrible mygraine

> headaches, and ohhhh boy.. did I mention mood

> swings??? LOL

>

> I can't tell everyone how much better I feel since I

> have been reading

> the posts. Just a couple a days ago I was so down,

> and didn't know

> what to think or what to feel. For the first time,

> I feel so great to

> know that I can say how I feel, and someone will

> understand, and I

> mean really understand. I have told some friends

> about the rp, and

> they give me blank looks and don't understand how

> serious this is, and

> it can make you feel soooo alone.

>

> Thank you for being here and understanding

> le

>

>

__________________________________________________

[Guest guest]

Hi le,

So glad you found this group. I have gained so much from it and I

think group therapy is good for anyone. Hope you are able to get an

appointment with Dr.Trentham. Hang in there. Hope you get to

feeling better real soon. I will be anxious to hear about the shower

head. Love, marilyn

Hi ,

>

> My husband was getting frustrated with me being sick all the time

and

> he told me to email Dr. Trentham and ask him what he thought, as my

> doctor didn't seem to think I can be treated at all. Hubby figured

it

> couldn't hurt, and we both disagreed with my doctor that my case is

> mild. Dr. Trentham emailed me back, and said he recommends me going

to

> Boston to see him. He said my age (30 yrs) and the fact I don't

sound

> like a mild case to him, concern him. So.. hubby and I are trying

to

> figure out when we can do this.

>

> I was actually wondering if anyone had seen Dr. Trentham. and if

they

> have any idea how long I may be there. I have called the office,

but

> am waiting for them to call back.

>

> I was also going to ask if any of the female members have any

hormonal

> problems as well. I have also been diagnosed with Polycystic Ovary

> Syndrome, but my gyno doesn't think either disease affects the

other,

> but I am currently on Promera (sp?) to correct it, and my ears have

> been flaring up alot, my neck hurts, my ankles and knees are

creaking

> in ways I didn't know was possible, not to mention terrible

mygraine

> headaches, and ohhhh boy.. did I mention mood swings??? LOL

>

> I can't tell everyone how much better I feel since I have been

reading

> the posts. Just a couple a days ago I was so down, and didn't know

> what to think or what to feel. For the first time, I feel so great

to

> know that I can say how I feel, and someone will understand, and I

> mean really understand. I have told some friends about the rp, and

> they give me blank looks and don't understand how serious this is,

and

> it can make you feel soooo alone.

>

> Thank you for being here and understanding

> le

[Guest guest]

In a message dated 8/2/01 7:25:03 PM Pacific Daylight Time, jasidan@...

writes:

<< not to mention terrible mygraine

headaches, and ohhhh boy.. did I mention mood swings??? LOL

>>

Hi le, Boy, I sure do know about those mood swings. LOL AND the

migraines...I just got over one from last nite...

I do have problems with my hormones... Can't seem to keep enough estrogen in

my body and the rest of my hormones are all out of whack.. Who said it was

ever going to be easy. LOL I'm due to make an appt to have my hormones

checked this month.

I feel that the meds kind of mess up everything. But I don't know for

sure...

Yes this group is a blessing... I know how you feel.. It is wonderful just to

vent and talk about stuff the we all understand... I don't know what I'd have

done without this group to give me the understanding and support that they

have... Hang in there...I'm sure you will hear from Dr T... I have never seen

him, but I know there are alot in the group that has...

hugs

[Guest guest]

Welcome Lunarfishgirl,

I'm new to this too. Had RNY the 18th of Nov., and am from Calif, north of

Fresno about 40 miles.

Joan C, California

Dr. Kelvin Higa

LAP RNY 11/18/03

New to the group

Hi Im new here. I have surgery scheduled December 4th 2003 and I am

so excited. I was originally going to go for Lap-band but I compared

all the research to that of the RNY and chose the RNY instead.

Im 5'8, 289 pounds, BMI 43. Im 23, female in California. I am just

so incredibly excited, I want it done now! Im so ready to start my

new life. Well, different life! Im doing the liver-reduction diet

right now as I am less than two weeks away from surgery.

I will be posting a pre-op picture in the photos folder and posting

more photos as things develop. (no pun intended!)

Anyway I just wanted to introduce myself.

Lunarfishgirl

PS: Oh I was wondering if anyone has started a product reveiw

database file for things like protein supplements and such? Taste,

price, texture, etc?

[Guest guest]

welcome aboard. in the files sections there are prot shake recipes,

to break up the monotony.

lori h.

> Hi Im new here. I have surgery scheduled December 4th 2003 and I

am

> so excited. I was originally going to go for Lap-band but I

compared

> all the research to that of the RNY and chose the RNY instead.

>

> Im 5'8, 289 pounds, BMI 43. Im 23, female in California. I am just

> so incredibly excited, I want it done now! Im so ready to start my

> new life. Well, different life! Im doing the liver-reduction diet

> right now as I am less than two weeks away from surgery.

>

> I will be posting a pre-op picture in the photos folder and

posting

> more photos as things develop. (no pun intended!)

>

> Anyway I just wanted to introduce myself.

>

> Lunarfishgirl

>

> PS: Oh I was wondering if anyone has started a product reveiw

> database file for things like protein supplements and such? Taste,

> price, texture, etc?

[Guest guest]

hi Joan. I am in Bakersfield, south of Fresno. Did you have your

surgery in Fresno? I seem to think thats where Dr. Higa is from. Im

having my surgery in Newport Beach. It was meant to be in Huntington

Heach but my insurance prefers the hospital in Newport. Im having

the RNY done laprascopically.

Congratulations on your very recent surgery. I hope you are feeling

peachy or at least more peachy as the days pass. Having any problems

or is all going smoothly?

Good luck on this phase of the journey,

Greer (lunarfishgirl)

> Welcome Lunarfishgirl,

> I'm new to this too. Had RNY the 18th of Nov., and am from Calif,

north of

> Fresno about 40 miles.

>

> Joan C, California

> Dr. Kelvin Higa

> LAP RNY 11/18/03

>

[Guest guest]

Greer, yes the surgery was in Fresno. I feel very lucky to have had Dr.

Higa. He has quite a reputation. Glad your surgery is going to be

laparscopically. From what I've read in here, it is certainly much easier

to heal from. Everything is going smooth for me. I really feel good. I

just spent 1-1/2 hours moving boxes and things in the garage. I don't lift

anything over 20# though. I've been cooking and cleaning, and feel pretty

close to normal in only 6 days. The only time I know something else is

going on is getting out of a chair. One of the incisions had a bump on it

and was sore, but I doctored it, and it's much better. I am still amazed at

how little pain I felt, when they do something major like this internally.

I don't tolerate pain well. I don't remember when you were having your

surgery??

Joan C, California

LAP RNY 11/18/03

282/275/265

Re: New to the group

hi Joan. I am in Bakersfield, south of Fresno. Did you have your

surgery in Fresno? I seem to think thats where Dr. Higa is from. Im

having my surgery in Newport Beach. It was meant to be in Huntington

Heach but my insurance prefers the hospital in Newport. Im having

the RNY done laprascopically.

Congratulations on your very recent surgery. I hope you are feeling

peachy or at least more peachy as the days pass. Having any problems

or is all going smoothly?

Good luck on this phase of the journey,

Greer (lunarfishgirl)

> Welcome Lunarfishgirl,

> I'm new to this too. Had RNY the 18th of Nov., and am from Calif,

north of

> Fresno about 40 miles.

>

> Joan C, California

> Dr. Kelvin Higa

> LAP RNY 11/18/03

>

[Guest guest]

Hi there,

My doctor told me that I would be a good candidate for the

Orthognathic surgery, and I am petrified!

I suffer froim sleep apnea, so the surgery will not necessarily be

performed to correct my overbite, though I have one.

I am a 42 yr old male and have had bad teeth my whole life. I have

had many trips to an orthodontist, but am probably beyond help

(unless I put up $10,000 to try).

I would like to know if there are others who have had this surgery

for sleep apnea, and if so, has it helped?

Thanks,

[Guest guest]

Hi ,

I had the surgery for sleep apnea. It did help me a great deal. Not

only do I breathe at night now, I don't even snore.

Has the doc said exactly what they want to do? Have they tried CPAP

on you yet? In my case, they felt that CPAP wouldn't help because of

the position of my lower jaw.

I'll be glad to answer any questions that I can for you.

a

> Hi there,

>

> My doctor told me that I would be a good candidate for the

> Orthognathic surgery, and I am petrified!

> I suffer froim sleep apnea, so the surgery will not necessarily be

> performed to correct my overbite, though I have one.

> I am a 42 yr old male and have had bad teeth my whole life. I have

> had many trips to an orthodontist, but am probably beyond help

> (unless I put up $10,000 to try).

> I would like to know if there are others who have had this surgery

> for sleep apnea, and if so, has it helped?

> Thanks,

>