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> I would like to join the support group if someone could please

email

> me. My address is bratzaj@a... My name is Bruce and I have had

> this disease for three years now. I have so many questions to ask

> others about it. Could any one please email me on how to get to the

> chat group and what day and time they meet.

>

Hi Bruce, and welcome. And welcome to all the other new members,

too! My name is Tull, and I'm a friend/primary care-giver of Karyn's,

who created this group about a year and a half ago. She's not able to

get on the computer herself very much these days, so I kind of try and

" fill in " for her in the meantime.

As far as looking for a place to ask questions about this disease,

you've definitely come to the right place! That's one of the main

purposes of this this group. While none of us are doctors, most have

direct experience in dealing with this condition, and are more than

willing to share that with others. So go ahead and start posting

any/all questions you may have ..... maybe one or 2 at a time! ;-)

As far as the chat group goes, folks are still kind of evaluating

different options for that, so it's still kind of in a state of

" flux " . The Chat room supplied for this purpose from the Yahoo

groups web site seems to be too slow, and some of the other options

that have been tried don't allow enough folks to join simultaneously.

When that gets sorted out, I'll update the " calendar " section of the

website, and everyone will get an e-mail reminder each week with the

time and URL for the chat. I believe one of our newer members

(Mark?) has graciously provided a link to his web site, and folks will

be trying that out tonight, Wednesday, March 28, starting at 5:30 pm

Pacific Standard Time (which I think is 8:30 Eastern Standard

time????). Here's the URL:

http://www.top5plus5.com/Chat%20Rooms.htm

In the meantime, feel free to start asking questions via e-mail!

Cheers to all,

--Tull

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Guest guest

Hi Bruce,

Welcome, my friend. It is still kinda sketchy what we are doing with

the chat group yet. We have been having big fun chatting every

night, and last night I think there was a great big confusion where

we were suppose to meet. When someone, or everyone, figures out what

we are doing, someone will let us all know. I am on the AOL IM -

Kru20Laws............and also the MSN IM

Kru20Law@... if you have either of these services,

please add my name, and when you see me on, IM me & we can chat that

way until everything else gets straightened out. Thanks, and again,

WELCOME!

Lots of Hugs,

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  • 3 weeks later...
Guest guest

Dear I can certainly understand your frustration with Chrissie's

problems. If she is not eating it is important that she is getting some kind

of nutrition. Possibly in liquid form so it will not give her any pain

swallowing. I can only imagine what you are going through. Make sure you get

breaks from caretaking as this is so important in your own well being. You

are doing a wonderful Job.

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  • 4 weeks later...
Guest guest

Hi, , and welcome. What you describe sounds very similar to something

my Mom had. Has your mother's thyroid levels been checked? My mom has been

on Synthroid for years, but then the bumps and itching started on her back.

She finally got it checked out, and the same thing - doctors had no clue. I

told her to go back and ask them to re-check her thyroid levels. Sure

enough, they were down a wee bit, and upping her Synthroid dose cleared her

up.

Hope this helps.

Air hugs,

Jackie

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Guest guest

Hi, , and welcome. What you describe sounds very similar to something

my Mom had. Has your mother's thyroid levels been checked? My mom has been

on Synthroid for years, but then the bumps and itching started on her back.

She finally got it checked out, and the same thing - doctors had no clue. I

told her to go back and ask them to re-check her thyroid levels. Sure

enough, they were down a wee bit, and upping her Synthroid dose cleared her

up.

Hope this helps.

Air hugs,

Jackie

_________________________________________________________________

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Guest guest

hmmm...Your description sort of sounds like scabies. But with scabies you

will see some " tunneling " marks on her skin, too Scabies seems to be seen

quite intensely in the armpits and folds of the elbows...and the warm places

on the body (usually not the scalp, though)...but can occur on back, etc.

Might your Mom have a fungal infection? Have your Dr. check for that.

Poor baby, my heart goes out to her.

Love, Suzanne in Juneau, Alaska

>

>Reply-To: urticaria

>To: urticaria

>Subject: Help

>Date: Mon, 14 May 2001 14:52:18 -0700

>

>Hi All -

>

>A friend just told me about this list, so I'm giving it a shot and hope

>you'll be able to help. My mother has " something " - the dermatologist

>and her doctors have not been able to diagnose it. She has small red

>bumps all over, especially her back, lower back, legs, arms, a bit on

>her feet, and shoulders. Sometimes they appear red, sometimes they

>don't. She also has some areas with a rash. Sometimes the bumps drain

>(if she scrathes), then forms a little scab. Some will bleed if she

>scratches too much.

>

>She has a lot of itching. The dermatologist even took a biopsy and he

>still doesn't know what it is. She's had it for six months; my final

>frustration came the other day when he suggested it might be scabies,

>because he didn't know what ele to say. Well, obviously, if that is

>what the problem is, we would all have it. Plus that's not at all what

>it looks like.

>

>Using Sea Breeze followed by the anti-itching lotion they give her

>helps. She's also taking methylprednisolone, (generic for Medrol) 4mg.

>

>Anyone have any thoughts? Anything specific on the FAQ you can suggest?

>

>Thanks. You can email me privately if you like.

>

>

>

>

>

_________________________________________________________________

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Guest guest

hmmm...Your description sort of sounds like scabies. But with scabies you

will see some " tunneling " marks on her skin, too Scabies seems to be seen

quite intensely in the armpits and folds of the elbows...and the warm places

on the body (usually not the scalp, though)...but can occur on back, etc.

Might your Mom have a fungal infection? Have your Dr. check for that.

Poor baby, my heart goes out to her.

Love, Suzanne in Juneau, Alaska

>

>Reply-To: urticaria

>To: urticaria

>Subject: Help

>Date: Mon, 14 May 2001 14:52:18 -0700

>

>Hi All -

>

>A friend just told me about this list, so I'm giving it a shot and hope

>you'll be able to help. My mother has " something " - the dermatologist

>and her doctors have not been able to diagnose it. She has small red

>bumps all over, especially her back, lower back, legs, arms, a bit on

>her feet, and shoulders. Sometimes they appear red, sometimes they

>don't. She also has some areas with a rash. Sometimes the bumps drain

>(if she scrathes), then forms a little scab. Some will bleed if she

>scratches too much.

>

>She has a lot of itching. The dermatologist even took a biopsy and he

>still doesn't know what it is. She's had it for six months; my final

>frustration came the other day when he suggested it might be scabies,

>because he didn't know what ele to say. Well, obviously, if that is

>what the problem is, we would all have it. Plus that's not at all what

>it looks like.

>

>Using Sea Breeze followed by the anti-itching lotion they give her

>helps. She's also taking methylprednisolone, (generic for Medrol) 4mg.

>

>Anyone have any thoughts? Anything specific on the FAQ you can suggest?

>

>Thanks. You can email me privately if you like.

>

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

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Guest guest

hmmm...Your description sort of sounds like scabies. But with scabies you

will see some " tunneling " marks on her skin, too Scabies seems to be seen

quite intensely in the armpits and folds of the elbows...and the warm places

on the body (usually not the scalp, though)...but can occur on back, etc.

Might your Mom have a fungal infection? Have your Dr. check for that.

Poor baby, my heart goes out to her.

Love, Suzanne in Juneau, Alaska

>

>Reply-To: urticaria

>To: urticaria

>Subject: Help

>Date: Mon, 14 May 2001 14:52:18 -0700

>

>Hi All -

>

>A friend just told me about this list, so I'm giving it a shot and hope

>you'll be able to help. My mother has " something " - the dermatologist

>and her doctors have not been able to diagnose it. She has small red

>bumps all over, especially her back, lower back, legs, arms, a bit on

>her feet, and shoulders. Sometimes they appear red, sometimes they

>don't. She also has some areas with a rash. Sometimes the bumps drain

>(if she scrathes), then forms a little scab. Some will bleed if she

>scratches too much.

>

>She has a lot of itching. The dermatologist even took a biopsy and he

>still doesn't know what it is. She's had it for six months; my final

>frustration came the other day when he suggested it might be scabies,

>because he didn't know what ele to say. Well, obviously, if that is

>what the problem is, we would all have it. Plus that's not at all what

>it looks like.

>

>Using Sea Breeze followed by the anti-itching lotion they give her

>helps. She's also taking methylprednisolone, (generic for Medrol) 4mg.

>

>Anyone have any thoughts? Anything specific on the FAQ you can suggest?

>

>Thanks. You can email me privately if you like.

>

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

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Guest guest

, Hello and welcome to the group!!! I am sorry to hear that your Mom

has been suffering. It is so hard to figure this unique puzzle out. This

website might be worth checking out and maybe a picture on it will help

http://tray.dermatology.uiowa.edu/DermImag.htm I hope this helps in some

way. Hang in there!! ~Alena's Mom

Help

> Hi All -

>

> A friend just told me about this list, so I'm giving it a shot and hope

> you'll be able to help. My mother has " something " - the dermatologist

> and her doctors have not been able to diagnose it. She has small red

> bumps all over, especially her back, lower back, legs, arms, a bit on

> her feet, and shoulders. Sometimes they appear red, sometimes they

> don't. She also has some areas with a rash. Sometimes the bumps drain

> (if she scrathes), then forms a little scab. Some will bleed if she

> scratches too much.

>

> She has a lot of itching. The dermatologist even took a biopsy and he

> still doesn't know what it is. She's had it for six months; my final

> frustration came the other day when he suggested it might be scabies,

> because he didn't know what ele to say. Well, obviously, if that is

> what the problem is, we would all have it. Plus that's not at all what

> it looks like.

>

> Using Sea Breeze followed by the anti-itching lotion they give her

> helps. She's also taking methylprednisolone, (generic for Medrol) 4mg.

>

> Anyone have any thoughts? Anything specific on the FAQ you can suggest?

>

> Thanks. You can email me privately if you like.

>

>

>

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

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Guest guest

, Hello and welcome to the group!!! I am sorry to hear that your Mom

has been suffering. It is so hard to figure this unique puzzle out. This

website might be worth checking out and maybe a picture on it will help

http://tray.dermatology.uiowa.edu/DermImag.htm I hope this helps in some

way. Hang in there!! ~Alena's Mom

Help

> Hi All -

>

> A friend just told me about this list, so I'm giving it a shot and hope

> you'll be able to help. My mother has " something " - the dermatologist

> and her doctors have not been able to diagnose it. She has small red

> bumps all over, especially her back, lower back, legs, arms, a bit on

> her feet, and shoulders. Sometimes they appear red, sometimes they

> don't. She also has some areas with a rash. Sometimes the bumps drain

> (if she scrathes), then forms a little scab. Some will bleed if she

> scratches too much.

>

> She has a lot of itching. The dermatologist even took a biopsy and he

> still doesn't know what it is. She's had it for six months; my final

> frustration came the other day when he suggested it might be scabies,

> because he didn't know what ele to say. Well, obviously, if that is

> what the problem is, we would all have it. Plus that's not at all what

> it looks like.

>

> Using Sea Breeze followed by the anti-itching lotion they give her

> helps. She's also taking methylprednisolone, (generic for Medrol) 4mg.

>

> Anyone have any thoughts? Anything specific on the FAQ you can suggest?

>

> Thanks. You can email me privately if you like.

>

>

>

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

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Guest guest

, Hello and welcome to the group!!! I am sorry to hear that your Mom

has been suffering. It is so hard to figure this unique puzzle out. This

website might be worth checking out and maybe a picture on it will help

http://tray.dermatology.uiowa.edu/DermImag.htm I hope this helps in some

way. Hang in there!! ~Alena's Mom

Help

> Hi All -

>

> A friend just told me about this list, so I'm giving it a shot and hope

> you'll be able to help. My mother has " something " - the dermatologist

> and her doctors have not been able to diagnose it. She has small red

> bumps all over, especially her back, lower back, legs, arms, a bit on

> her feet, and shoulders. Sometimes they appear red, sometimes they

> don't. She also has some areas with a rash. Sometimes the bumps drain

> (if she scrathes), then forms a little scab. Some will bleed if she

> scratches too much.

>

> She has a lot of itching. The dermatologist even took a biopsy and he

> still doesn't know what it is. She's had it for six months; my final

> frustration came the other day when he suggested it might be scabies,

> because he didn't know what ele to say. Well, obviously, if that is

> what the problem is, we would all have it. Plus that's not at all what

> it looks like.

>

> Using Sea Breeze followed by the anti-itching lotion they give her

> helps. She's also taking methylprednisolone, (generic for Medrol) 4mg.

>

> Anyone have any thoughts? Anything specific on the FAQ you can suggest?

>

> Thanks. You can email me privately if you like.

>

>

>

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

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  • 1 year later...
Guest guest

Hello,I was wondering If anyone out there knows what to do for

extreme back pain and leg pain!I have good days and bad days,but

today is really bad.I take neurontin 100 mg,Ithelps with my head and

gazing,but it does not help with my back and legs.I have poor balance

and coordination at times I feel like I'm going to fall but luckily I

catch myself.If anyone has any info I would greatly appreciate it!

Thanks Tiff,mom of ally and ariel all 3 of us have mitochondrial

encephalomyopathy!

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Guest guest

Tiff

I am the mother of Colby, COX IV< LCHAD, I too suffer from back pain. I was

on ms contin for awhile, neurotin did nothing for me. I had 3 series of

epidural blocks in my back last year, it worked for a year, and I am ready to

go back again. Look in your yellow pages for pain management. Hope this

helps.

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Guest guest

Tiff

I am the mother of Colby, COX IV< LCHAD, I too suffer from back pain. I was

on ms contin for awhile, neurotin did nothing for me. I had 3 series of

epidural blocks in my back last year, it worked for a year, and I am ready to

go back again. Look in your yellow pages for pain management. Hope this

helps.

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Guest guest

Tiff

I am the mother of Colby, COX IV< LCHAD, I too suffer from back pain. I was

on ms contin for awhile, neurotin did nothing for me. I had 3 series of

epidural blocks in my back last year, it worked for a year, and I am ready to

go back again. Look in your yellow pages for pain management. Hope this

helps.

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Guest guest

Thanks ,I can use all the help I can get,My neurologist doesn't tell us

anything.he once told me a couple years back,that i would have good days and bad

days.but,he did not tell us what would be a bad day was!I found out what a bad

day was about.god bless.Tiff

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Guest guest

Thanks ,I can use all the help I can get,My neurologist doesn't tell us

anything.he once told me a couple years back,that i would have good days and bad

days.but,he did not tell us what would be a bad day was!I found out what a bad

day was about.god bless.Tiff

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Guest guest

I have no advice but we sure know all about neurontin not working for leg pains! It hasn't made one bit of difference in our son's leg pain.

We are going to ask for something else when we go back in June. Maybe I can let you know what we get.

Hopefully something that works!

re:help

Hello,I was wondering If anyone out there knows what to do for extreme back pain and leg pain!I have good days and bad days,but today is really bad.I take neurontin 100 mg,Ithelps with my head and gazing,but it does not help with my back and legs.I have poor balance and coordination at times I feel like I'm going to fall but luckily I catch myself.If anyone has any info I would greatly appreciate it!Thanks Tiff,mom of ally and ariel all 3 of us have mitochondrial encephalomyopathy!Please contact mito-owner with any problems or questions.

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Guest guest

I have no advice but we sure know all about neurontin not working for leg pains! It hasn't made one bit of difference in our son's leg pain.

We are going to ask for something else when we go back in June. Maybe I can let you know what we get.

Hopefully something that works!

re:help

Hello,I was wondering If anyone out there knows what to do for extreme back pain and leg pain!I have good days and bad days,but today is really bad.I take neurontin 100 mg,Ithelps with my head and gazing,but it does not help with my back and legs.I have poor balance and coordination at times I feel like I'm going to fall but luckily I catch myself.If anyone has any info I would greatly appreciate it!Thanks Tiff,mom of ally and ariel all 3 of us have mitochondrial encephalomyopathy!Please contact mito-owner with any problems or questions.

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Guest guest

I have no advice but we sure know all about neurontin not working for leg pains! It hasn't made one bit of difference in our son's leg pain.

We are going to ask for something else when we go back in June. Maybe I can let you know what we get.

Hopefully something that works!

re:help

Hello,I was wondering If anyone out there knows what to do for extreme back pain and leg pain!I have good days and bad days,but today is really bad.I take neurontin 100 mg,Ithelps with my head and gazing,but it does not help with my back and legs.I have poor balance and coordination at times I feel like I'm going to fall but luckily I catch myself.If anyone has any info I would greatly appreciate it!Thanks Tiff,mom of ally and ariel all 3 of us have mitochondrial encephalomyopathy!Please contact mito-owner with any problems or questions.

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  • 1 year later...

I do have some cards missing.

I found my list and I had at least 8 missing.

I bought more cards and finally got them addressed and put where the cats cannot get to them.

Sharon

HELP

My cats messed up my cards and I have some of them missing.

I went to see if I had the list and for some dumb reason I deleted it.

I need pages 1 through 4.

I have 5 through 10.

My cards will be late this year because of all the craziness going on.

I hope you forgive me and I promise next year I will get them out a lot earlier.

Sharon

~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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I do have some cards missing.

I found my list and I had at least 8 missing.

I bought more cards and finally got them addressed and put where the cats cannot get to them.

Sharon

HELP

My cats messed up my cards and I have some of them missing.

I went to see if I had the list and for some dumb reason I deleted it.

I need pages 1 through 4.

I have 5 through 10.

My cards will be late this year because of all the craziness going on.

I hope you forgive me and I promise next year I will get them out a lot earlier.

Sharon

~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

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  • 8 months later...

Hi! My name is Tina and I'm new to this group. I've started the

process with Kaiser to get approval for this surgery. So far, things

have not gone very smoothly. My doctor had no problem referring me

initially. I attended the class at Pt. West given by a nutrition

person and a behavioral medicine person. According to the teachers of

the class, the next step was paperwork being sent to SSF for approval

and that it should take approximately 2 months to find out. Well, 1

month after I took the class, I called SSF (Marina) to make sure she

had my paperwork. Low and beyond, NO PAPERWORK! I've called and left

messages with my PCP and have tried to talk to various people at

Kaiser to find out the process but no luck. Any help would be greatly

appreciated.

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Hi Tina,

Welcome to the group. I hope you brought lots of patience with you

too. Kaiser hasn't been the fastest route for obtaining WLS but they

do provide some highly skilled surgeons who do the surgery.

I wish I could tell you that the road to surgery will be a smooth

one. It has been for a few Kaiser patients. From a patient's point of

view I can only tell you that there are a lot of people here who

share your frustration, and we help each other through the processes

for WLS with Kaiser.

You didn't mention specificly when you started the process for WLS.

I started the process for approval of a gastric by-pass in August of

2003. I received approval in June of 2004. I am scheduled for

orientation at the new Fremont site next month, September 28th 2004.

I know I will have another month's wait for my visit with the

surgeron, anesteologist, 2nd psych eval & 2 nutritionist.

Some people have a shorter process than I have had others have had

longer. One year is about the norm for most patients.

BTW, my PCP supposedly sent in my file for approval to SSF the first

week of March. It wasn't until the first week of April that I found

out is wasn't submitted. Then it took another month for my file to

accutally be compiled and sent to SSF....hence the June approval.

Hang in there. We are here to listen and support you in the process.

In the mean time, don't give up on calling your PCP. Keep on her.

(and whomever is compiling your file for submission to SSF). The

squeaky wheel definitely gets things in motion where Kaiser is

concerned.

Best of luck,

D

> Hi! My name is Tina and I'm new to this group. I've started the

> process with Kaiser to get approval for this surgery. So far,

things

> have not gone very smoothly. My doctor had no problem referring me

> initially. I attended the class at Pt. West given by a nutrition

> person and a behavioral medicine person. According to the teachers

of

> the class, the next step was paperwork being sent to SSF for

approval

> and that it should take approximately 2 months to find out. Well, 1

> month after I took the class, I called SSF (Marina) to make sure

she

> had my paperwork. Low and beyond, NO PAPERWORK! I've called and

left

> messages with my PCP and have tried to talk to various people at

> Kaiser to find out the process but no luck. Any help would be

greatly

> appreciated.

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