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<< You don't have the CMT gene but have the symptoms -- unlike my family

who has the gene more often than the symptoms. >>

<< When these situations come up -- people that have CMT without the gene it

must stump the doctors. >>

Hi Natilee,

You missed the conversation about genes. The DNA (gene) test only detects

three types of CMT. Type 1A, X-linked, and HNPP.

Family history, reflex tests, appearance of the patient's feet and legs, and

EMGs are among the tools used to identify the other types.

All of the more than 20 types involve genes, but the other ones have not had

their exact location identified so they don't show up on the genetic (DNA)

test.

CMT symptoms vary between people, even among members of the same family. In

some families most members are very mildly affected. They may not even think

they have CMT; they may think they are slightly clumsy, or that they just

have odd feet, or perhaps they have no symptoms at all.

In another family there may be many members who need AFOs, walkers,

wheelchairs, or other aids for mobility. CMT is so inconsistent it is

frustrating to patients and to doctors alike.

This is from Dorothy Gosling's web site:

CMT 1A with duplication

(occurs approximately 10.5 per 100,000 population)

There is an incidence of 18% sporadic cases with no family history with 60%

having a family history of CMT. Males and females are equally affected.

http://tor-pw1.netcom.ca/~dgosling/cmt/types.html

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

Key:

HNPP = Hereditary Neuropathy with Liability to Pressure Palsies

AFO = Ankle Foot Orthotic

EMG = Electromyography

I hope this helps.

Kat in Seattle

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<< You don't have the CMT gene but have the symptoms -- unlike my family

who has the gene more often than the symptoms. >>

<< When these situations come up -- people that have CMT without the gene it

must stump the doctors. >>

Hi Natilee,

You missed the conversation about genes. The DNA (gene) test only detects

three types of CMT. Type 1A, X-linked, and HNPP.

Family history, reflex tests, appearance of the patient's feet and legs, and

EMGs are among the tools used to identify the other types.

All of the more than 20 types involve genes, but the other ones have not had

their exact location identified so they don't show up on the genetic (DNA)

test.

CMT symptoms vary between people, even among members of the same family. In

some families most members are very mildly affected. They may not even think

they have CMT; they may think they are slightly clumsy, or that they just

have odd feet, or perhaps they have no symptoms at all.

In another family there may be many members who need AFOs, walkers,

wheelchairs, or other aids for mobility. CMT is so inconsistent it is

frustrating to patients and to doctors alike.

This is from Dorothy Gosling's web site:

CMT 1A with duplication

(occurs approximately 10.5 per 100,000 population)

There is an incidence of 18% sporadic cases with no family history with 60%

having a family history of CMT. Males and females are equally affected.

http://tor-pw1.netcom.ca/~dgosling/cmt/types.html

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

Key:

HNPP = Hereditary Neuropathy with Liability to Pressure Palsies

AFO = Ankle Foot Orthotic

EMG = Electromyography

I hope this helps.

Kat in Seattle

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  • 3 months later...
Guest guest

Yes, he is a blessing, but don't tell him, I would like to keep him humble

a little while linger....as if.

Robynn

Re: (unknown)

> In a message dated 4/28/00 3:57:10 PM Eastern Daylight Time,

> rhandr@... writes:

>

> << here are times I wonder what I did to get such a good man, he has

always

> come through, with flying colors for me, and he really does it well. >>

>

> Robynn,

>

> What a wonderful blessing he is!

>

> {{HUGS}}

>

> Claire

> Redhead in FL

> MGB 4/10/00 !!!!

> Dr. Rutledge (http:/clos.net)

>

>

> " He who began a good work in you will be faithful to complete it until the

> day of Christ Jesus. " - Phil. 1:6

>

> ------------------------------------------------------------------------

> You have a voice mail message waiting for you at iHello.com:

> http://click.egroups.com/1/3555/1/_/453517/_/956959259/

> ------------------------------------------------------------------------

>

> This message is from the Mini-Gastric Bypass Mailing List at Onelist.com

> Please visit our web site at http://clos.net

> Get the Patient Manual at http://clos.net/get_patient_manual.htm

>

>

>

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Guest guest

Yes, he is a blessing, but don't tell him, I would like to keep him humble

a little while linger....as if.

Robynn

Re: (unknown)

> In a message dated 4/28/00 3:57:10 PM Eastern Daylight Time,

> rhandr@... writes:

>

> << here are times I wonder what I did to get such a good man, he has

always

> come through, with flying colors for me, and he really does it well. >>

>

> Robynn,

>

> What a wonderful blessing he is!

>

> {{HUGS}}

>

> Claire

> Redhead in FL

> MGB 4/10/00 !!!!

> Dr. Rutledge (http:/clos.net)

>

>

> " He who began a good work in you will be faithful to complete it until the

> day of Christ Jesus. " - Phil. 1:6

>

> ------------------------------------------------------------------------

> You have a voice mail message waiting for you at iHello.com:

> http://click.egroups.com/1/3555/1/_/453517/_/956959259/

> ------------------------------------------------------------------------

>

> This message is from the Mini-Gastric Bypass Mailing List at Onelist.com

> Please visit our web site at http://clos.net

> Get the Patient Manual at http://clos.net/get_patient_manual.htm

>

>

>

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Guest guest

Dear Kathy,

There are surgeons in the Chicago area doing RNY's, both open & lap, but

only Dr. Rutledge in Durham, NC, does the MGB. He created this procedure

and has not yet trained anyone else on it. You can get all the info on his

procedure at the website: http://clos.net. Where in Chicago are you from?

I am a pre-op recently moved from Westmont, IL to GA.

This is a great site with lots of info. But you have to come to Durham if

you want the MGB.

P. in GA

(unknown)

> Are there physicians and clinics that do this procedure outside of

> North Carolina? Chicago area?

>

>

> ------------------------------------------------------------------------

> Now the best and coolest websites come right to you based on your

> unique interests. eTour.com is surfing without searching.

> And, it's FREE!

> http://click.egroups.com/1/3013/1/_/453517/_/957137887/

> ------------------------------------------------------------------------

>

> This message is from the Mini-Gastric Bypass Mailing List at Onelist.com

> Please visit our web site at http://clos.net

> Get the Patient Manual at http://clos.net/get_patient_manual.htm

>

>

>

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  • 2 weeks later...
Guest guest

I'll try it...anything for Dr. R!!! I'm usually up twice a night with my

baby anyway, so I'll do it then. I hope it works! :)

_____________________________________________

Amy S. Poe

MGB 5/22/2000

280/140

United Healthcare Select Plus POS approved

(unknown)

Hello Friends,

I know how we can support Dr. Rutledge in his presentation at the

conference next month. We can do " broadcast messages " to the

conference attendees.

Here is how it works:

As you go to bed tell yourself that you are going to awaken at the

time when the greatest number of conference members are the most

receptive to receiving your message. You will wake up - no doubt

about it. When you do wake up, you just have a conversation with the

group. I think we should tell them that Dr. R. is a very talented

surgeon and a wonderful person. Tell them that they should treat the

Doctor and the material he presents with the utmost respect. Tell

them that by the time he finishes his presentation that any

skeptisism they previously had will have vanished and that they will

know that Dr. R and MGB are THE BEST.

Speaking of skepticism, there may be more than a few of you who are a

little skeptical of broadcast messaging. I have had much success

with this when I knew I had a confrontation coming up. Come on, give

it a try - You've got nothing to lose. If this powerful group

started now and bombarded them with these messages every night, those

conference attendees will be putty in his hands.

You don't have to do it every night, but we do need to make sure

every night is covered. Each of us could pick a couple of nights a

week we are willing to do it.

Is anyone interested?

Carolyn in VA

_____

http://click.egroups.com/1/3746/2/_/453517/_/958021352/>

Auction listings at govWorks.com. Click here.

http://adimg.egroups.com/img/3746/2/_/453517/_/958021352/>

_____

This message is from the Mini-Gastric Bypass Mailing List at Onelist.com

Please visit our web site at http://clos.net http://clos.net>

Get the Patient Manual at http://clos.net/get_patient_manual.htm

http://clos.net/get_patient_manual.htm>

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Guest guest

Dear Paige,

So glad you are doing so well. Please give us your stats. It's so much

fun hearing the different stages of all the post-ops. Keep up the good work.

All the Best,

Genz

paige windahl wrote:

> Hi all,

> Well I am about a month and a week out of surgery and I am learning every

> day what is a good thing to eat and a bad thing! LOL My weight is great and

> I am feeling so much more in control of my life!

> Things I have learned, eating something warm at first and drinking warm

> herbal tea makes meals much more pleasant! I have gotten to where soup and

> salad are the choices when eating out. I have also figured out that

> different chinese restaurants use diferent ingredients in basically the same

> dishes and usually one will sit better. I am still big on the flavored

> crackers and feel satisfied with the crunch and taste of them. I am am so

> much more active and I am doing more lately than in a long time. My sleep

> schedule is so much better it is scary! I am working on a month of days

> journal that I kept track of right after surgery and they are fun to reread

> and see how much I have learned in the time since surgery. I craved the

> crunch too much and finally gave up on the only liquids and have been adding

> things as I feel the need. I am concerned that straight water has not been a

> great thing and that I am going to have to work on another source of liquid

> for later in the day. I drink herbal teas in the mornings and that is about

> 4 8oz glasses with 4 more needed by the end of the day! LOL The whey

> protein is not all that palatable( I do not like the vanilla flavor, too

> sweet) but I try to get some in me once a day at least! I have had little

> problems with meats if they are in a light glaze or sauce like stir fry. If

> the meat is drier then I seem to trap air in my tummy and it has to

> " percolate " up before I can eat more. A couple of times I have been too

> hungry and wanted to eat too fast and that traps air too. I think I swallow

> air when I eat anyway but hurrying does not help! LOL I am finding that my

> favorite yogurt is too sweet now and I am amazed at how much sugar there is

> in yogurt! ACK I mix cottage cheese and yogurt half and half to get it less

> sweet. I also really like my cottage cheese with salt and pepper so that is

> good too! I cannot wait for tomatos to get ripe that will really be good! I

> have found that I really like egg drop soup and it seems to like me!:) I

> make it with " fake " eggs so the fat is less and then use the chicken broth

> as the base. Well all, keep watch for the journal, I may ask Dr R if he

> woudl like to use it on the web page:) Love to all and Godspeed! PAige

> ________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

> ------------------------------------------------------------------------

> Get paid for the stuff you know!

> Get answers for the stuff you don’t. And get $10 to spend on the site!

> http://click.egroups.com/1/2200/2/_/453517/_/958159036/

> ------------------------------------------------------------------------

>

> This message is from the Mini-Gastric Bypass Mailing List at Onelist.com

> Please visit our web site at http://clos.net

> Get the Patient Manual at http://clos.net/get_patient_manual.htm

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  • 2 weeks later...
Guest guest

In a message dated 5/22/2000 6:48:40 PM Eastern Daylight Time,

chuebear@... writes:

<< Hey, I got my date!!!! Finally, I am so excited and scared. I will

be in Friday, May 26. Is anyone else on that date?

Almost There

Della

>>

CONGRATULATIONS Della!!!!!!!!!!

Wanting

to be on the other side,

Cathy in Lenoir, NC

Patient Info Emailed on 5/2/00

BMI 42

" A Journey Of A Thousand Miles Begins With A Single Step! "

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  • 8 months later...

> yea! thanks Alice I was suspecting that MILLET was OK

> 'cause I bought it w/o thought at the health store

> thinking it was a variety of rice that I had heard was

> OK, but then I started having doubts remembering when

> I bought the not OK spelt, but we're are on bag two

> when we hooked up the computor w/o side effect so I

> was thinking it was OK.

So which millet are you using? What spelt is okay? I have tried spelt

before. I thought he was reacting to it but that was before we found out

about all of his other allergies. I am scared to try again.

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Hi,

We use millet regularly, it is gluten free!!

Kati

>

> Mehegan wrote:

>

> > Hi, does anyone know what 'millet' is? Is it

> glueten

> > free? Are

__________________________________________________

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  • 2 weeks later...

In a message dated 2/25/01 8:33:01 PM Pacific Standard Time,

renee0543@... writes:

> Please pass on this mail to all

> > > your friends. Forward this to everyone in your address book. I would

> >rather

> > > receive this 25 times than not at all.

>

>

> and all who have posted virus warnings: THANK YOU!!!!!

> I don't mind any repetition at all. I really appreciate it, as I have been

> attacked by computer viruses recently and now I'm a believer!

> THANKS AGAIN

> Cherri

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  • 2 weeks later...
Guest guest

Love it!!

Sandy

> Ten Things Men Know About Women

>

> 1.

>

> 2.

>

> 3.

>

> 4.

>

> 5.

>

> 6.

>

> 7.

>

> 8.

>

> 9.

>

> 10. They have boobs.

>

>

>

> __________________________________________________

>

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Guest guest

In a message dated 3/20/01 3:37:37 PM Pacific Standard Time,

sisterslk@... writes:

<< He said I have many clinical components of the

disease, but he doesn't know of another case where one has RP and

another autoimmune disorder. >>

Sharon, I think most of us have RP and another autoimmune disease or

two...LOL I don't think there are many who have just RP... Am I wrong on

this??? I need someone elses imput here.

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Guest guest

In a message dated 3/20/01 3:37:37 PM Pacific Standard Time,

sisterslk@... writes:

<< He said I have many clinical components of the

disease, but he doesn't know of another case where one has RP and

another autoimmune disorder. >>

Sharon, I think most of us have RP and another autoimmune disease or

two...LOL I don't think there are many who have just RP... Am I wrong on

this??? I need someone elses imput here.

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Guest guest

In a message dated 3/20/01 3:37:37 PM Pacific Standard Time,

sisterslk@... writes:

<< He said I have many clinical components of the

disease, but he doesn't know of another case where one has RP and

another autoimmune disorder. >>

Sharon, I think most of us have RP and another autoimmune disease or

two...LOL I don't think there are many who have just RP... Am I wrong on

this??? I need someone elses imput here.

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Guest guest

Sharon,

I have other immune disorders besides RP. Sjogrens Syndrome

and Vascullitis are 2 of them.

Sandy

He said I have many clinical components of the

> disease, but he doesn't know of another case where one has RP and

> another autoimmune disorder.

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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