Hello

[Guest guest]

Where are you located?

>

> My name is and I have recently joined the group. I am a

school based practicing occupational therapist and have taken 3 of

Svetlana's courses. I am also a Brain Gym consultant and wish to open

a private practice for all ages in the next few years. The reflex work

has been the most effective and efficient one in my tool box thus far-

Thank you! I am excited to share this work, learn more and learn more

and learn more!

>

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

> Special deal for users & friends - No Cost. Get a month of

Blockbuster Total Access now

>

>

[Guest guest]

I am in Maine- far away! I am looking for some tips on oral seeking

behaviors- I have so many kids that are putting everything in their

mouths that are school aged. Also- CP child with some major drooling

issues, developmentally around 9 months and speaks about 3 words.

I'd love any advice- I have taken the tactile course, infant and

postural reflex courses. I am waiting for the facial one- but need

something now! Thanks,

> >

> > My name is and I have recently joined the group. I am a

> school based practicing occupational therapist and have taken 3 of

> Svetlana's courses. I am also a Brain Gym consultant and wish to

open

> a private practice for all ages in the next few years. The reflex

work

> has been the most effective and efficient one in my tool box thus

far-

> Thank you! I am excited to share this work, learn more and learn

more

> and learn more!

> >

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

> > Special deal for users & friends - No Cost. Get a month of

> Blockbuster Total Access now

> >

> >

[Guest guest]

Hi

Also, I wanted to let you know there will be a Postural and Dynamics Reflex Integration class in Boston this fall.

Bonnie Hershey will be the sponsor. You can find her info on the MasgutovaMethod.com webpage.

Re: Hello

I am in Maine- far away! I am looking for some tips on oral seeking

behaviors- I have so many kids that are putting everything in their

mouths that are school aged. Also- CP child with some major drooling

issues, developmentally around 9 months and speaks about 3 words.

I'd love any advice- I have taken the tactile course, infant and

postural reflex courses. I am waiting for the facial one- but need

something now! Thanks,

> >

> > My name is and I have recently joined the group. I am a

> school based practicing occupational therapist and have taken 3 of

> Svetlana's courses. I am also a Brain Gym consultant and wish to

open

> a private practice for all ages in the next few years. The reflex

work

> has been the most effective and efficient one in my tool box thus

far-

> Thank you! I am excited to share this work, learn more and learn

more

> and learn more!

> >

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

> > Special deal for users & friends - No Cost. Get a month of

> Blockbuster Total Access now

> >

> >

[Guest guest]

Agreed on all counts. Many thanks to Balan

and to you, Dr. Furman, for your unparalleled generosity. I believe that this

group serves us on several levels. The explanations of various medical

conditions and treatments is invaluable. For my part, I find that such a

caring, knowledgeable group relieves stress and anxiety and I believe stress

reduction is an important part of treatment. Stress reduction is good for

everything! Thank you both and thank you, group!

Bonnie Le Var

From: [mailto: ] On Behalf Of rrfman

Sent: Wednesday, September 03,

2008 5:30 PM

Subject: Hello

I am back from vacation respond to many of the

comments that have

recently been made. When asked me to become involved with this

group, my greatest concern was that some of you might feel inhibited

talking about certain topics by the presence of a physician. The

group was started as a means for people with CLL (family and friends

included) to talk about anything and everything that is going on with

their lives and to share their experiences with others who might be

going through similar situations. This is too important to let

anything prevent this. I think 's " nudge " back in that direction

is very important and helpful.

With that being said, I am glad that I am able to help so many people

by my involvement with the group and ask all of you not to worry

about me. If I become too overwhelmed, I may go quite for a while.

Otherwise, I am happy to help all of you in anyway I can.

As has been repeated very frequently, we should all applaud

Balan for all of his efforts, not just as part of this talk list, to

help people with CLL.

Rick Furman, MD

[Guest guest]

Hello, Children with Challenges – South

Bay Group

So far no one has let me know if they are coming

to the March 18th practice session. On the 18th AT &

T is also changing the Simoneon

Center phone # from (408)

264-4121 to (408) 559-9556. I am not sure which number you will need to

call for leaving a message if calling on that day. Please call the day

before and leave your message with a return phone # so I can confirm your

attendance.

Thank you all!

I hope we are able to get together on the

18th, but in April, if not. Everyone interested in this group,

please mention available dates in April for planning next month. Meeting

times will always be 7-9 PM. A Tuesday or Wednesday evening usually works

for me.

Scholer

Simoneon Pediatric Development Center

1952 Camden Ave, Suite 104

San , CA. 95124

From: diane hunter

[mailto:hunterdiane@...]

Sent: Tuesday, March 10, 2009

11:42 AM

Scholer

Subject: Re: Hello

Hi ,

Either nights normally will work for me however, hubby and I are planning a few

days away next week to Tahoe so I won't be able to make it next week.

Please keep me informed of the schedule so I can hopefully join next time!

Best,

Diane

From:

Scholer <otrmom@...>

diane hunter

<hunterdiane@...>

Sent: Sunday, March 8, 2009

12:29:53 PM

Subject: RE: Hello

Hello Diane,

I am thinking about all of us meeting for

the first time (if it works for others) on Wednesday March 17th

between 7-9 PM. Likely it will be held monthly on Wednesdays around the

same time in the month (each month), if this works for others. Tuesday

evenings at the same time can also work for me as well.

The address is 1952 Camden Avenue, Suite 104 . We are on

the south-west corner of Camden

and Bercaw (next to a service station, which is under construction). Our

location is between the major cross streets of Union Avenue (to our west) and Leigh Avenue (to

our east). The phone # is (408) 264-4121. Please call this # each

time you plan to attend and leave your phone # on the message (in the

unexpected event I need to cancel at the last minute for reasons of illness or

unexpected emergency). I will be asking that those who plan to attend

call in for each meeting (on the day of the planned meeting).

I hope this time frame and day works for

you, Diane.

I look forward to seeing you again!

From: diane hunter

[mailto:hunterdiane@...]

Sent: Saturday, March 07, 2009

7:54 PM

otrmom@...

Subject: Hello

Hi ,

We met last Monday at Dr. Masgutova's class. I live in Los Gatos and I'm a mother of Ian, 7 year old

with Autism. I'm interested in being included in any gatherings/meetings

that you organize for the south bay. Please add me to your list of

contacts.

Best,

Diane

[Guest guest]

Welcome, Eri Maa. I know you will find good advice, valuable insights and understanding fellow travelers here. Most of us are not doctors, but can share our experiences dealing with CLL and working with the medical system. If you have questions ask away.

Pat KennedyOn Thu, Aug 20, 2009 at 10:52 PM, Eri Maa <erimaa1@...> wrote:

 

I have been daignosed with stage 4 cll sice 06.Presently treated By Dr B.Deren of MKMG in MT.Kisco

I have also seen Dr Rai in LIJ for staging.

[Guest guest]

I am sorry, I do not know what MKMG in MT.Kisco or LIJ mean, could you please clarify for me,,,I am new in the CLL/SLL world.  Thank-you.From: Eri Maa <erimaa1@...>Subject: hello Date: Friday, August 21, 2009, 1:52 AM

 

I have been daignosed with stage 4 cll sice 06.Presently treated By Dr B.Deren of MKMG in MT.KiscoI have also seen Dr Rai in LIJ for staging.

__________________________________________________

[Guest guest]

MKMG stands presumably for Mt. Kisco Medical Group.

LIJ is Long Island Jewish Medical Center where a top CLL expert Kanti Rai

consults with patients.

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[Guest guest]

Right!From: dimackinn <dimackinn@...> Sent: Friday, August 21, 2009 9:59:37 AMSubject: Re: hello

MKMG stands presumably for Mt. Kisco Medical Group.

LIJ is Long Island Jewish Medical Center where a top CLL expert Kanti Rai consults with patients.

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[Guest guest]

Hi Diane,

Definitely it has helped me. 18 months since desense. Rate of sinus infections down. Polyps decreased. No prednisone in 9 months. No surgery in 6 years.

V. Bosso, MD was found on our website.

samters/database?method=reportRows & tbl=4

Go for it....I wish you well!

hello

I am sitting here recuperating from my fifth surgery for polyps. I was diagnosed with Samter's about 1991. I started with the aspirin allergy and environmental allergies, then polyps, lastly the asthma, which has gotten worse over the past 2 years. My surgeon is suggesting I look into aspirin desensitization therapy. Has anyone done this? Had success? Do you need to be on aspirin forever? I live in NJ and the ENT knew of a Dr. Bosso that does the desensitization.

I'm looking forward to looking at all the info available in the group.

Thanks

Diane

[Guest guest]

Thanks, . Will read more.From: ChartacJS@... <ChartacJS@...>Subject: Re: hellosamters Date: Tuesday, November 3, 2009, 4:14 PM

Hi Diane,

Definitely it has helped me. 18 months since desense. Rate of sinus infections down. Polyps decreased. No prednisone in 9 months. No surgery in 6 years.

V. Bosso, MD was found on our website.

http://health. groups.. com/group/ samters/database ?method=reportRo ws & tbl=4

Go for it....I wish you well!

hello

I am sitting here recuperating from my fifth surgery for polyps. I was diagnosed with Samter's about 1991. I started with the aspirin allergy and environmental allergies, then polyps, lastly the asthma, which has gotten worse over the past 2 years. My surgeon is suggesting I look into aspirin desensitization therapy. Has anyone done this? Had success? Do you need to be on aspirin forever? I live in NJ and the ENT knew of a Dr. Bosso that does the desensitization.

I'm looking forward to looking at all the info available in the group.

Thanks

Diane

[Guest guest]

Hi Diane -- I only developed Samter's this year -- but it progressed pretty fast, and because it involved sensitivity to salicylates it was extremely difficult for me to eat many foods. I also completely lost my sense of smell. I had extensive surgery and was desensitized just last month -- and while I've had some problems, I think desensitization is really the best hope for Samter's and from what I've read the only really effective treatment. I can now smell again and can eat everything, and even started drinking red wine again, which previously made me ill. And my nasal pathways look good so far. I think it would be important for you to do the desensitization as soon as possible, so that polyps don't have much time to grow back post-surgery. Desensitization itself for most people is only truly unpleasant for a relatively short-time, when you react to the aspirin. If you are very sensitive this happens fairly early in the process, and the rest of the time is boring but not much is happening physically. I suggest taking lots of things to distract your mind and if possible having friends come visit -- just so you don't feel alone. As I said it has all been very recent for me, and so I don't know what the long term effects will be, but I am so happy to be able to eat and drink and smell normally again. I'm a little strange as I developed asthma post- desens -- but this may have been coming anyhow, and I think eventually the aspirin should help this as well. I had some problems with the amount of aspirin I was taking and so have reduced the dose, but so far it seems to be working fine. My doctor said that taking the aspirin may help rebuild the proper arachidonic acid pathway, so that it no longer leads to inflammation, and that some of his patients have eventually been able to discontinue aspirin altogether. Hope this helps and good luck!JoanOn Nov 3, 2009, at 1:53 PM, Diane Lundy wrote:

I am sitting here recuperating from my fifth surgery for polyps. I was diagnosed with Samter's about 1991. I started with the aspirin allergy and environmental allergies, then polyps, lastly the asthma, which has gotten worse over the past 2 years. My surgeon is suggesting I look into aspirin desensitization therapy. Has anyone done this? Had success? Do you need to be on aspirin forever? I live in NJ and the ENT knew of a Dr. Bosso that does the desensitization. I'm looking forward to looking at all the info available in the group.ThanksDiane

[Guest guest]

You are blessed-lucky that you have 2 (!) doctors who actually know about

desensitization and understand that it can be administered safely and result

in a positive outcome.

Surgery begets surgery.

Avoid surgery with:

- irrigation

- desensitization

- steroid sprays

>

> I am sitting here recuperating from my fifth surgery for polyps.  I was

> diagnosed with Samter's about 1991.  I started with the aspirin allergy and

> environmental allergies, then polyps, lastly the asthma, which has gotten

> worse over the past 2 years.  My surgeon is suggesting I look into aspirin

> desensitization therapy.  Has anyone done this? Had success? Do you need to be

> on aspirin forever?  I live in NJ and the ENT knew of a Dr. Bosso that

> does the desensitization.

[Guest guest]

Thanks, have been through it all. Steroid nasal sprays, saline irrigation, etc. Allergy shots too.From: q2 <kenwest@...>Subject: Re: hellosamters Date: Tuesday, November 3, 2009, 5:19 PM

You are blessed-lucky that you have 2 (!) doctors who actually know about

desensitization and understand that it can be administered safely and result

in a positive outcome.

Surgery begets surgery.

Avoid surgery with:

- irrigation

- desensitization

- steroid sprays

>

> I am sitting here recuperating from my fifth surgery for polyps. I was

> diagnosed with Samter's about 1991. I started with the aspirin allergy and

> environmental allergies, then polyps, lastly the asthma, which has gotten

> worse over the past 2 years. My surgeon is suggesting I look into aspirin

> desensitization therapy. Has anyone done this? Had success? Do you need to be

> on aspirin forever? I live in NJ and the ENT knew of a Dr. Bosso that

> does the desensitization.

[Guest guest]

Thanks Joan. I don't know a lot about the process of the desensitization. I assume you were monitored for a few days initially? I'm not sure how quickly I'll be able to do it as I put off starting a new job to get the surgery out of the way. Did insurance cover it?

I am sitting here recuperating from my fifth surgery for polyps. I was diagnosed with Samter's about 1991. I started with the aspirin allergy and environmental allergies, then polyps, lastly the asthma, which has gotten worse over the past 2 years. My surgeon is suggesting I look into aspirin desensitization therapy. Has anyone done this? Had success? Do you need to be on aspirin forever? I live in NJ and the ENT knew of a Dr. Bosso that does the desensitization. I'm looking forward to looking at all the info available in the group.ThanksDiane

[Guest guest]

Well, insurance -- I'm hoping they pay. I think most companies do -- but my company made a fuss which wasn't resolved by the time I was desensitized. I think standard desensitization is two full days -- during which you are monitored -- but after that it generally isn't necessary.On Nov 3, 2009, at 4:38 PM, Diane Lundy wrote:

Thanks Joan. I don't know a lot about the process of the desensitization. I assume you were monitored for a few days initially? I'm not sure how quickly I'll be able to do it as I put off starting a new job to get the surgery out of the way. Did insurance cover it?

I am sitting here recuperating from my fifth surgery for polyps. I was diagnosed with Samter's about 1991. I started with the aspirin allergy and environmental allergies, then polyps, lastly the asthma, which has gotten worse over the past 2 years. My surgeon is suggesting I look into aspirin desensitization therapy. Has anyone done this? Had success? Do you need to be on aspirin forever? I live in NJ and the ENT knew of a Dr. Bosso that does the desensitization. I'm looking forward to looking at all the info available in the group.ThanksDiane

[Guest guest]

Hi Dave,Welcome to the group!Here is another Cayce group that you may wish to join:tecvlWith best wishes,Dudley

dudley_delanyFrom: more_dave

Sent: Sunday, January 16, 2011 5:24 PM

Subject: Hello

I'm new to the list and I would thanks Dudley for his web pages which has tremendously help me.

The WettCell had been immediately effective.

Regards.

[Guest guest]

Hi Alan and welcome to the group.

Sorry to hear about your son and I hope he will be one of the lucky ones who is able to tolerate and be well on thyroxine alone. You say your wife has been hypothyroid for many years. Has she been well on thyroxine alone. Many people are.

One of the best places to go for information is in the files section, on the left hand side of the home page.

There is quite a lot of reading so get yourself a tea/coffee or whatever your favourite drink is, because you might be in for a long session

You will learn a lot from there and of course, feel free to ask any questions you have.

Lilian

I'm not a thyroid patient but my wife has had underactive thyroid for many years now and our son who is 22 has just been diagnosed with uneractive thyroid so I'm looking for info and if possible to offer help in the future to list readers. How that will be I'm not sure but hello anyway. Alan

[Guest guest]

Hi alan,

Welcome. It seems Mother pass their thyroid dysfunction to their children I'm afraid. Since more and more women are suffering thyroid dysfunction, then more and more kids will also suffer thyroid dysfunction.

What have they suggested your son do about his low thyroid function and what is his mum doing for hers? Sally xx

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[Guest guest]

I'm not a thyroid patient but my wife has had underactive thyroid for many years now and our son who is 22 has just been diagnosed with uneractive thyroid so I'm looking for info and if possible to offer help in the future to list readers. How that will be I'm not sure but hello anyway.Hello Alan and welcome J

I'm sorry to hear that your son is already hypothyroid at such a young age, but at least he has been diagnosed and offered treatment, which is more than so many members here are fighting for.

A good way to start is to order Dr. Peatfield's book "Your thyroid and how to keep it healthy". It is under £ 10 and you can buy it from Amazon. Everything you and your family need to learn is in this book. Other than that – browse our files and read other people's stories on the forum. At first much of it might sound Chinese to you, but if you keep reading, you will get the hang of it – just don't give up J

Best wishes,

[Guest guest]

Hi Lillian, sally and ,

My wife has been on thyroxine for well over 20 years and has had it increased from 100 to 150 mg daily about 10 years ago.

As for my son he has been given thyroxine and vitamin D tablets but being a night owl student type it's no surprise to hear he doesn't get enough vit D from the sun, lol.

I'll read the files and also get the book via this site and go from there.

I said I wasn't a sufferer but reading the symptoms on the site I think the only one I couldn't associate with was the early menopause... lol.

Thanks for the welcome.

Alan

[Guest guest]

how do you know you're not a sufferer though if you have the symptoms? is it

possible if your son has it? (or have i missed something here?)

chris

> I said I wasn't a sufferer but reading the symptoms on the site I think the

only one I couldn't associate with was the early menopause... lol.

>

[Guest guest]

Firstly thanks for being here living with a disabilitating disease is not easy

but greatly helped when shared with others suffering similar, I look forward to

sharing with you.

I recently was diagnosed ith SS but it's been since birth and I've had problems

since birth but always noted as attention grabbing symptoms and until a few

years ago I believed them sort of but was ashamed of my medical history so

pretended to feel nothing....

After 4 perm babies and continuos health problems and then a MVA as the final

straw I slowly lost my mobility or should I say my life...

Cutting a very long story short... Now days I'm in constant pain that has

debilitated me to the couch using a power chair to get around with only a few

assisted steps.

Where as once I worked from dawn to midnight now I don't , well on a good day I

might be able to get up and do something but most days I'm crap.

Tarlov Cysts, Spinal Stenosis, Spinal Epidural Liptomatosis, 3x torn disks,

Degenerative Disk Disease, Spinal O Arthritis, plus a load of digestive and

autoimmune diseases, I'd need a forest of trees made to paper to write it all

down

I must turn to humour to pass each day, that and my beautiful grand children,

and children, not to mention my beautiful man by my side helping me along my

way.

I hope this find you all having a better day today....

Adrienne