Introduction

August 17, 2002

Welcome. I recall a couple cases from the list. One Mom also posted the

changes in the pictures. I also

recall one, who had some facial palsy that seemingly progressed being 'bell's

palsy' (theory vaccine

reaction) but after a peroid of getting worse; improves.

A. Gloyn, Canada

tclobaugh@... wrote:

> Of most immediate concern to us is information regarding facial

> palsy. 's 7th nerve palsy appeared on her left side when she was

> 2 1/2 months old. One day it wasn't there, the next day it was. Over

> the course of the next 3 months, it progressed slowly to her right

> side.

August 17, 2002

Welcome. I recall a couple cases from the list. One Mom also posted the

changes in the pictures. I also

recall one, who had some facial palsy that seemingly progressed being 'bell's

palsy' (theory vaccine

reaction) but after a peroid of getting worse; improves.

A. Gloyn, Canada

tclobaugh@... wrote:

> Of most immediate concern to us is information regarding facial

> palsy. 's 7th nerve palsy appeared on her left side when she was

> 2 1/2 months old. One day it wasn't there, the next day it was. Over

> the course of the next 3 months, it progressed slowly to her right

> side.

August 19, 2002

Thanks for the info! We just got our CHARGE manual in the mail, and have

been making our may slowly through it.

Christian Lobaugh (Husband to Ingrid, and Dad to - 3, and 7

months CHARGE)

Introduction

Howdy from Oklahoma! We are the parents of two wonderful girls,

3-year-old and 7-month-old , who is being evaluated for

CHARGE. was born on 1/3/02 and quickly diagnosed with

tracheoesophageal fistula, esophageal atresia and a PDA (all 3 now

thankfully repaired). Since coming home from NICU, we have learned

that she has a profound hearing loss and unilateral choanal atresia.

She has a vertebral anomoly that her doctors consider insignificant,

ear anomolies, low muscle tone in her trunk, slow postnatal growth and

developmental delays. Her kidney ultrasound and eye exam were normal.

VATER is the other association being considered for (fun fact:

one of our geneticists is Burhan Say, who wrote the original VATER

paper in 1968 -- amazing man). We're not sure why has not been

diagnosed at this time, except for the apparent lack of experience

with CHARGE.

Of most immediate concern to us is information regarding facial

palsy. 's 7th nerve palsy appeared on her left side when she was

2 1/2 months old. One day it wasn't there, the next day it was. Over

the course of the next 3 months, it progressed slowly to her right

side. We have pictures documenting the change from birth to present.

We've been told everything, from it's viral to mitochondrial to

terminal. We were sent to Dallas for an EMG when motor neuron disease

was the diagnosis of the day. While that was fortunately ruled out,

the 3 neurologists involved still seem to have differing opinions.

The information we were originally given on CHARGE stated that CHARGE

facial palsy would be unilateral, present at birth, and

non-progressive. Have any of you experienced a progressive type of

palsy? One that wasn't present at birth? I've already read that it

can be bilateral. Do you have any suggestions for us? We don't

really know what to do next, and apparently neither does our medical

team. Our local neurologist has ordered a couple of other tests (for

spinal muscular atrophy and genetic mitochondrial test), but doesn't

expect to find anything.

Thanks in advance for your input.

Christian & Ingrid Lobaugh, frightened & frustrated parents to

(3) & (7 months - CHARGE???)

August 19, 2002

To and everyone,

Just a note to remind everyone that the Manual is now $25 due to the

postage increase and printing costs.

We do appreciate your recommendation of the Manual. New parents may also

want to order the New Parent Folder which is free to parents.

n

wrote:

And if you haven't already purchased one, I

> HIGHLY recommend getting a copy of the CHARGE Management Manual for Parents,

> available from the foundation. (www.chargesyndrome.org)

> It's a well spent 20 dollars.

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation, Inc.

2004 Parkade Blvd, Columbia MO 65202 USA

phone/fax; (families only)

mailto:mnorbury@... or mailto:marion@...

web site: http://www.chargesyndrome.org

August 19, 2002

To and everyone,

Just a note to remind everyone that the Manual is now $25 due to the

postage increase and printing costs.

We do appreciate your recommendation of the Manual. New parents may also

want to order the New Parent Folder which is free to parents.

n

wrote:

And if you haven't already purchased one, I

> HIGHLY recommend getting a copy of the CHARGE Management Manual for Parents,

> available from the foundation. (www.chargesyndrome.org)

> It's a well spent 20 dollars.

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation, Inc.

2004 Parkade Blvd, Columbia MO 65202 USA

phone/fax; (families only)

mailto:mnorbury@... or mailto:marion@...

web site: http://www.chargesyndrome.org

August 19, 2002

To and everyone,

Just a note to remind everyone that the Manual is now $25 due to the

postage increase and printing costs.

We do appreciate your recommendation of the Manual. New parents may also

want to order the New Parent Folder which is free to parents.

n

wrote:

And if you haven't already purchased one, I

> HIGHLY recommend getting a copy of the CHARGE Management Manual for Parents,

> available from the foundation. (www.chargesyndrome.org)

> It's a well spent 20 dollars.

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation, Inc.

2004 Parkade Blvd, Columbia MO 65202 USA

phone/fax; (families only)

mailto:mnorbury@... or mailto:marion@...

web site: http://www.chargesyndrome.org

August 19, 2002

Thanks for the update n....it really is a must-have for parents....

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: Introduction

To and everyone,

Just a note to remind everyone that the Manual is now $25 due to the

postage increase and printing costs.

We do appreciate your recommendation of the Manual. New parents may also

want to order the New Parent Folder which is free to parents.

n

wrote:

And if you haven't already purchased one, I

> HIGHLY recommend getting a copy of the CHARGE Management Manual for Parents,

> available from the foundation. (www.chargesyndrome.org)

> It's a well spent 20 dollars.

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation, Inc.

2004 Parkade Blvd, Columbia MO 65202 USA

phone/fax; (families only)

mailto:mnorbury@... or mailto:marion@...

web site: http://www.chargesyndrome.org

August 19, 2002

Thanks for the update n....it really is a must-have for parents....

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: Introduction

To and everyone,

Just a note to remind everyone that the Manual is now $25 due to the

postage increase and printing costs.

We do appreciate your recommendation of the Manual. New parents may also

want to order the New Parent Folder which is free to parents.

n

wrote:

And if you haven't already purchased one, I

> HIGHLY recommend getting a copy of the CHARGE Management Manual for Parents,

> available from the foundation. (www.chargesyndrome.org)

> It's a well spent 20 dollars.

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation, Inc.

2004 Parkade Blvd, Columbia MO 65202 USA

phone/fax; (families only)

mailto:mnorbury@... or mailto:marion@...

web site: http://www.chargesyndrome.org

March 24, 2005

HI KARIS, I am new too, and so far this group has made me feel very welcome! I hope you feel the same! Soft Hug... Hello everyone; My name is Karis, I'm a 36y/o single mother of a teenage daughter, living in Toronto Ontario. I am 6yrs diagnosed with FM-CFS, though have suffered the symptoms much longer. Additionally, I also have RLS, Sciatica, PTSD, Depression, Chronic Insomnia.. etc etc etc. And the 99 symptoms and side effects which go along with each of my illnesses. I have been on pretty much every medication known to man lol .. currently I am on the Duragesic Patch 25mcg for chronic pain around the clock, though I am having it increased to 50mcg - because of severe breakthrough pain, which I am taking Tylenol 4's for. This is in addition to muscle relaxants, CNS relaxants, etc etc etc. I am currently trying to shift as much of my prescription meds over to supplements as much as possible, at the moment, I am taking Vitamin D - 1200IU/day .. Magnesium 900mg/day ... B-Complex 100 and Glucosamine Sulfate 1500mg/day. I am looking forward to starting D-Ribose in the next week, as well. In my former group, there were many members who had wonderful results with D-Ribose, so I hope to share in those and find the relief I need. I also have severe swelling in my feet - I am fearful that I may have Gout - so, I will be having the urik acid testing done for that next week as well. ~seems I am forever being tested for one thing or another~ *ugh* lol Luckily, my most recent test have shown that I do not have Lupus. Which I am VERY thankful for. As I said, I have recently left my former support group, of which I was a Moderator... and though I will miss many of the members there, most of whom I have become quite close with, I am in search of a new 'home'. I am hopeful that I will be able to find the support I require within your group. I know the importance of sharing fears/concerns/experiences with ones who "know" what I am going through. And hopefully I can share with you some of my personal experiences as well. I look forward to getting to know each of you, over time .. as I am with great hopes that I may be able to become part of your 'family'. <warm hugs> Karis 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

March 24, 2005

HI KARIS, I am new too, and so far this group has made me feel very welcome! I hope you feel the same! Soft Hug... Hello everyone; My name is Karis, I'm a 36y/o single mother of a teenage daughter, living in Toronto Ontario. I am 6yrs diagnosed with FM-CFS, though have suffered the symptoms much longer. Additionally, I also have RLS, Sciatica, PTSD, Depression, Chronic Insomnia.. etc etc etc. And the 99 symptoms and side effects which go along with each of my illnesses. I have been on pretty much every medication known to man lol .. currently I am on the Duragesic Patch 25mcg for chronic pain around the clock, though I am having it increased to 50mcg - because of severe breakthrough pain, which I am taking Tylenol 4's for. This is in addition to muscle relaxants, CNS relaxants, etc etc etc. I am currently trying to shift as much of my prescription meds over to supplements as much as possible, at the moment, I am taking Vitamin D - 1200IU/day .. Magnesium 900mg/day ... B-Complex 100 and Glucosamine Sulfate 1500mg/day. I am looking forward to starting D-Ribose in the next week, as well. In my former group, there were many members who had wonderful results with D-Ribose, so I hope to share in those and find the relief I need. I also have severe swelling in my feet - I am fearful that I may have Gout - so, I will be having the urik acid testing done for that next week as well. ~seems I am forever being tested for one thing or another~ *ugh* lol Luckily, my most recent test have shown that I do not have Lupus. Which I am VERY thankful for. As I said, I have recently left my former support group, of which I was a Moderator... and though I will miss many of the members there, most of whom I have become quite close with, I am in search of a new 'home'. I am hopeful that I will be able to find the support I require within your group. I know the importance of sharing fears/concerns/experiences with ones who "know" what I am going through. And hopefully I can share with you some of my personal experiences as well. I look forward to getting to know each of you, over time .. as I am with great hopes that I may be able to become part of your 'family'. <warm hugs> Karis 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

March 24, 2005

Hi Karis,

Welcome to the group I am new just a couple of days, my friend has

FM/and CFS she is also doing all neutrceuticals at this point. Glad to

hear you are able to get off some drugs. My friend has beat the pain

cycle, now just dealing with old habits of depression. I am hear

learning from others what she has been through, so I can help her thru

this last part of depression. It will be good to hear how you cope.

karis wrote:

>

> / Hello everyone; /

> / /

> / My name is Karis, I'm a 36y/o single mother of a teenage daughter,

> living in Toronto Ontario. I am 6yrs diagnosed with FM-CFS, though have

> suffered the symptoms much longer. Additionally, I also have RLS,

> Sciatica, PTSD, Depression, Chronic Insomnia.. etc etc etc. And the 99

> symptoms and side effects which go along with each of my illnesses. /

> / /

> / I have been on pretty much every medication known to man lol ..

> currently I am on the Duragesic Patch 25mcg for chronic pain around the

> clock, though I am having it increased to 50mcg - because of severe

> breakthrough pain, which I am taking Tylenol 4's for. This is in

> addition to muscle relaxants, CNS relaxants, etc etc etc. /

> / /

> / I am currently trying to shift as much of my prescription meds over to

> supplements as much as possible, at the moment, I am taking Vitamin D -

> 1200IU/day .. Magnesium 900mg/day ... B-Complex 100 and Glucosamine

> Sulfate 1500mg/day. I am looking forward to starting D-Ribose in the

> next week, as well. /

> / /

> / In my former group, there were many members who had wonderful results

> with D-Ribose, so I hope to share in those and find the relief I need. /

> / /

> / I also have severe swelling in my feet - I am fearful that I may have

> Gout - so, I will be having the urik acid testing done for that next

> week as well. ~seems I am forever being tested for one thing or

> another~ *ugh* lol /

> / /

> / Luckily, my most recent test have shown that I do not have Lupus.

> Which I am VERY thankful for. /

> / /

> / As I said, I have recently left my former support group, of which I

> was a Moderator... and though I will miss many of the members there,

> most of whom I have become quite close with, I am in search of a new

> 'home'. /

> / /

> / I am hopeful that I will be able to find the support I require within

> your group. I know the importance of sharing fears/concerns/experiences

> with ones who " know " what I am going through. And hopefully I can share

> with you some of my personal experiences as well. /

> / /

> / I look forward to getting to know each of you, over time .. as I am

> with great hopes that I may be able to become part of your 'family'. /

> / /

> / <warm hugs> /

> / Karis /

> / /

>

> 1. While it is wonderful to share our experiences with everyone on the

> list as to what treatments do and don't work for us, pls always check

> with your dr. Some treatments are dangerous when given along with other

> meds as well as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls

> don't be afraid to ask for help. It is the first step to trying to make

> that situation better.

>

> Have a nice day everyone.

>

> *

March 24, 2005

Hi Karis,

Welcome to the group I am new just a couple of days, my friend has

FM/and CFS she is also doing all neutrceuticals at this point. Glad to

hear you are able to get off some drugs. My friend has beat the pain

cycle, now just dealing with old habits of depression. I am hear

learning from others what she has been through, so I can help her thru

this last part of depression. It will be good to hear how you cope.

karis wrote:

>

> / Hello everyone; /

> / /

> / My name is Karis, I'm a 36y/o single mother of a teenage daughter,

> living in Toronto Ontario. I am 6yrs diagnosed with FM-CFS, though have

> suffered the symptoms much longer. Additionally, I also have RLS,

> Sciatica, PTSD, Depression, Chronic Insomnia.. etc etc etc. And the 99

> symptoms and side effects which go along with each of my illnesses. /

> / /

> / I have been on pretty much every medication known to man lol ..

> currently I am on the Duragesic Patch 25mcg for chronic pain around the

> clock, though I am having it increased to 50mcg - because of severe

> breakthrough pain, which I am taking Tylenol 4's for. This is in

> addition to muscle relaxants, CNS relaxants, etc etc etc. /

> / /

> / I am currently trying to shift as much of my prescription meds over to

> supplements as much as possible, at the moment, I am taking Vitamin D -

> 1200IU/day .. Magnesium 900mg/day ... B-Complex 100 and Glucosamine

> Sulfate 1500mg/day. I am looking forward to starting D-Ribose in the

> next week, as well. /

> / /

> / In my former group, there were many members who had wonderful results

> with D-Ribose, so I hope to share in those and find the relief I need. /

> / /

> / I also have severe swelling in my feet - I am fearful that I may have

> Gout - so, I will be having the urik acid testing done for that next

> week as well. ~seems I am forever being tested for one thing or

> another~ *ugh* lol /

> / /

> / Luckily, my most recent test have shown that I do not have Lupus.

> Which I am VERY thankful for. /

> / /

> / As I said, I have recently left my former support group, of which I

> was a Moderator... and though I will miss many of the members there,

> most of whom I have become quite close with, I am in search of a new

> 'home'. /

> / /

> / I am hopeful that I will be able to find the support I require within

> your group. I know the importance of sharing fears/concerns/experiences

> with ones who " know " what I am going through. And hopefully I can share

> with you some of my personal experiences as well. /

> / /

> / I look forward to getting to know each of you, over time .. as I am

> with great hopes that I may be able to become part of your 'family'. /

> / /

> / <warm hugs> /

> / Karis /

> / /

>

> 1. While it is wonderful to share our experiences with everyone on the

> list as to what treatments do and don't work for us, pls always check

> with your dr. Some treatments are dangerous when given along with other

> meds as well as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls

> don't be afraid to ask for help. It is the first step to trying to make

> that situation better.

>

> Have a nice day everyone.

>

> *

March 25, 2005

Hi Karis, Your so welcome! It is difficult you never quite know if you will offend anyone, or step on any toes! But I went in here full barrel! And everyone has been awesome! Why did you leave your last group? Hi ; Thank you for the warm welcome, it is very difficult to move into a new group ... I hope that I am able to find my own little space within this established group/family. I am sure that everyone is very friendly and supportive - its just hard starting over. Karis HI KARIS, I am new too, and so far this group has made me feel very welcome! I hope you feel the same! Soft Hug... Hello everyone; My name is Karis, I'm a 36y/o single mother of a teenage daughter, living in Toronto Ontario. I am 6yrs diagnosed with FM-CFS, though have suffered the symptoms much longer. Additionally, I also have RLS, Sciatica, PTSD, Depression, Chronic Insomnia.. etc etc etc. And the 99 symptoms and side effects which go along with each of my illnesses. I have been on pretty much every medication known to man lol .. currently I am on the Duragesic Patch 25mcg for chronic pain around the clock, though I am having it increased to 50mcg - because of severe breakthrough pain, which I am taking Tylenol 4's for. This is in addition to muscle relaxants, CNS relaxants, etc etc etc. I am currently trying to shift as much of my prescription meds over to supplements as much as possible, at the moment, I am taking Vitamin D - 1200IU/day .. Magnesium 900mg/day ... B-Complex 100 and Glucosamine Sulfate 1500mg/day. I am looking forward to starting D-Ribose in the next week, as well. In my former group, there were many members who had wonderful results with D-Ribose, so I hope to share in those and find the relief I need. I also have severe swelling in my feet - I am fearful that I may have Gout - so, I will be having the urik acid testing done for that next week as well. ~seems I am forever being tested for one thing or another~ *ugh* lol Luckily, my most recent test have shown that I do not have Lupus. Which I am VERY thankful for. As I said, I have recently left my former support group, of which I was a Moderator... and though I will miss many of the members there, most of whom I have become quite close with, I am in search of a new 'home'. I am hopeful that I will be able to find the support I require within your group. I know the importance of sharing fears/concerns/experiences with ones who "know" what I am going through. And hopefully I can share with you some of my personal experiences as well. I look forward to getting to know each of you, over time .. as I am with great hopes that I may be able to become part of your 'family'. <warm hugs> Karis 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

March 25, 2005

Hi Karis, Your so welcome! It is difficult you never quite know if you will offend anyone, or step on any toes! But I went in here full barrel! And everyone has been awesome! Why did you leave your last group? Hi ; Thank you for the warm welcome, it is very difficult to move into a new group ... I hope that I am able to find my own little space within this established group/family. I am sure that everyone is very friendly and supportive - its just hard starting over. Karis HI KARIS, I am new too, and so far this group has made me feel very welcome! I hope you feel the same! Soft Hug... Hello everyone; My name is Karis, I'm a 36y/o single mother of a teenage daughter, living in Toronto Ontario. I am 6yrs diagnosed with FM-CFS, though have suffered the symptoms much longer. Additionally, I also have RLS, Sciatica, PTSD, Depression, Chronic Insomnia.. etc etc etc. And the 99 symptoms and side effects which go along with each of my illnesses. I have been on pretty much every medication known to man lol .. currently I am on the Duragesic Patch 25mcg for chronic pain around the clock, though I am having it increased to 50mcg - because of severe breakthrough pain, which I am taking Tylenol 4's for. This is in addition to muscle relaxants, CNS relaxants, etc etc etc. I am currently trying to shift as much of my prescription meds over to supplements as much as possible, at the moment, I am taking Vitamin D - 1200IU/day .. Magnesium 900mg/day ... B-Complex 100 and Glucosamine Sulfate 1500mg/day. I am looking forward to starting D-Ribose in the next week, as well. In my former group, there were many members who had wonderful results with D-Ribose, so I hope to share in those and find the relief I need. I also have severe swelling in my feet - I am fearful that I may have Gout - so, I will be having the urik acid testing done for that next week as well. ~seems I am forever being tested for one thing or another~ *ugh* lol Luckily, my most recent test have shown that I do not have Lupus. Which I am VERY thankful for. As I said, I have recently left my former support group, of which I was a Moderator... and though I will miss many of the members there, most of whom I have become quite close with, I am in search of a new 'home'. I am hopeful that I will be able to find the support I require within your group. I know the importance of sharing fears/concerns/experiences with ones who "know" what I am going through. And hopefully I can share with you some of my personal experiences as well. I look forward to getting to know each of you, over time .. as I am with great hopes that I may be able to become part of your 'family'. <warm hugs> Karis 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

March 25, 2005

Hi Karis, Your so welcome! It is difficult you never quite know if you will offend anyone, or step on any toes! But I went in here full barrel! And everyone has been awesome! Why did you leave your last group? Hi ; Thank you for the warm welcome, it is very difficult to move into a new group ... I hope that I am able to find my own little space within this established group/family. I am sure that everyone is very friendly and supportive - its just hard starting over. Karis HI KARIS, I am new too, and so far this group has made me feel very welcome! I hope you feel the same! Soft Hug... Hello everyone; My name is Karis, I'm a 36y/o single mother of a teenage daughter, living in Toronto Ontario. I am 6yrs diagnosed with FM-CFS, though have suffered the symptoms much longer. Additionally, I also have RLS, Sciatica, PTSD, Depression, Chronic Insomnia.. etc etc etc. And the 99 symptoms and side effects which go along with each of my illnesses. I have been on pretty much every medication known to man lol .. currently I am on the Duragesic Patch 25mcg for chronic pain around the clock, though I am having it increased to 50mcg - because of severe breakthrough pain, which I am taking Tylenol 4's for. This is in addition to muscle relaxants, CNS relaxants, etc etc etc. I am currently trying to shift as much of my prescription meds over to supplements as much as possible, at the moment, I am taking Vitamin D - 1200IU/day .. Magnesium 900mg/day ... B-Complex 100 and Glucosamine Sulfate 1500mg/day. I am looking forward to starting D-Ribose in the next week, as well. In my former group, there were many members who had wonderful results with D-Ribose, so I hope to share in those and find the relief I need. I also have severe swelling in my feet - I am fearful that I may have Gout - so, I will be having the urik acid testing done for that next week as well. ~seems I am forever being tested for one thing or another~ *ugh* lol Luckily, my most recent test have shown that I do not have Lupus. Which I am VERY thankful for. As I said, I have recently left my former support group, of which I was a Moderator... and though I will miss many of the members there, most of whom I have become quite close with, I am in search of a new 'home'. I am hopeful that I will be able to find the support I require within your group. I know the importance of sharing fears/concerns/experiences with ones who "know" what I am going through. And hopefully I can share with you some of my personal experiences as well. I look forward to getting to know each of you, over time .. as I am with great hopes that I may be able to become part of your 'family'. <warm hugs> Karis 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone. 1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

March 25, 2005

Hi ,

I was a Moderator in my last group and though I will not get into specifics, I will say that there were tensions amongst the Management Team, and I felt it was best to leave, rather then have it cause stress for myself or any of our members.

Karis

Re: Introduction

Hi Karis,

Your so welcome! It is difficult you never quite know if you will offend anyone, or step on any toes! But I went in here full barrel! And everyone has been awesome! Why did you leave your last group?

Hi ;

Thank you for the warm welcome, it is very difficult to move into a new group ... I hope that I am able to find my own little space within this established group/family. I am sure that everyone is very friendly and supportive - its just hard starting over.

Karis

HI KARIS,

I am new too, and so far this group has made me feel very welcome!

I hope you feel the same!

Soft Hug...

Hello everyone;

My name is Karis, I'm a 36y/o single mother of a teenage daughter, living in Toronto Ontario. I am 6yrs diagnosed with FM-CFS, though have suffered the symptoms much longer. Additionally, I also have RLS, Sciatica, PTSD, Depression, Chronic Insomnia.. etc etc etc. And the 99 symptoms and side effects which go along with each of my illnesses.

I have been on pretty much every medication known to man lol .. currently I am on the Duragesic Patch 25mcg for chronic pain around the clock, though I am having it increased to 50mcg - because of severe breakthrough pain, which I am taking Tylenol 4's for. This is in addition to muscle relaxants, CNS relaxants, etc etc etc.

I am currently trying to shift as much of my prescription meds over to supplements as much as possible, at the moment, I am taking Vitamin D - 1200IU/day .. Magnesium 900mg/day ... B-Complex 100 and Glucosamine Sulfate 1500mg/day. I am looking forward to starting D-Ribose in the next week, as well.

In my former group, there were many members who had wonderful results with D-Ribose, so I hope to share in those and find the relief I need.

I also have severe swelling in my feet - I am fearful that I may have Gout - so, I will be having the urik acid testing done for that next week as well. ~seems I am forever being tested for one thing or another~ *ugh* lol

Luckily, my most recent test have shown that I do not have Lupus. Which I am VERY thankful for.

As I said, I have recently left my former support group, of which I was a Moderator... and though I will miss many of the members there, most of whom I have become quite close with, I am in search of a new 'home'.

I am hopeful that I will be able to find the support I require within your group. I know the importance of sharing fears/concerns/experiences with ones who "know" what I am going through. And hopefully I can share with you some of my personal experiences as well.

I look forward to getting to know each of you, over time .. as I am with great hopes that I may be able to become part of your 'family'.

Karis

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.Have a nice day everyone.

March 25, 2005