Re:

[Guest guest]

Andi,

I would certainly ask the docs about enzymes! Like I said, for months I was unable to eat and nothing seemed to help except for these magic pills! There are different doses and they started me on 10's but ended up with MT16's. Script says to take 3 with a meal and two with a snack. It honestly was the first time I ate anything without pain (or at least very little) in almost 4 months. I fell in love with them.

I was so desperate to eat that even though I was on TPN (and not suppose to eat or drink) I would put food in my mouth, chew it as long as possible, and then spit it out. How pathetic is that?! I discovered then that I LOVE FOOD. The enzymes are rather expensive, but if you have good insurance that's not an issue. (I am on disability and Medicare doesn't cover meds.)

By the time they got me squared away I was not only very thin but as gray as cement. Then I had intermittant bouts with jaundice, and some days the colors would compete. Competition is not always a good thing!

They gray is gone except for around my eyes as well (black, gray whatever). And my skin color is frequently yellowish (although the doctors pointed out that I do not yet "glow"). My family has gotten used to me being a colorful person, but I just avoid the mirrors as much as possible.

You said you were drinking Ensure now. AT the risk of sounding like a commercial - that saved my life more than once. When I was first diagnosed and lost so much weight it took me 1.5 years to gain a substantial amount of weight back. The docs said I wouldn't gain weight. Of course then I was on a mission to prove them wrong, after all I had a 4 mo. old baby to raise. I ate as much as I could and drank Ensure in between. That did it. Also, when they put the stents in in Nov. I couldn't eat for quite some time so my hubby kept me stocked in no-fat ensure. For two weeks that's all I drank, but I gained some weight back. Yeah!

You mentioned pancreas problems associated with PSC. Well, you'll get a kick out of this. I started having extreme joint pain in Nov. '96 and went to the doc that originally diagnosed my UC/PSC. He did some blood work and found that my ANA was extremely high and sent me to a specialist who diagnosed me with rhuematoid arthritis. Pain got worse and pounds began to be shed. Pain then spread to my abdomen, mostly the left quadrant. The doc had told me in 1984, when diagnosed, I was now a high risk for pancreatitis. Knowing this I mentioned the pancreas. He blew me off and checked my kidneys instead. Went to the ER, asked them to check pancreatic enzymes, they refused. So in May '97, I speak to the doc again and he tells me that he thinks I need to see a shrink. I told him if it was all in my head that I needed a lobotomy, because the pain had gotten unbearable. He laughed. A few days later I went to a different ER and the guy took one look at me and checked my enzymes. He came back with the results and begged me to take a pain shot while they admitted me. My enzymes were through the roof. (It's a good thing I didn't go for the lobotomy, huh?)

And that, is how it all began. Needless to say that doc is no longer MY doc! I think he's an idiot! Knowing that I was high risk yet refusing to check for pancreatitis. Yikes! I called him from the hospital just to tell him what my Amylase was. I could tell he was a little embarrassed and I never got a bill from him. Not billing me was the only smart thing he did!

Well, enough of my rambling. Hope I have given you enough info. about enzymes. If not let me know, and I'll help if I can.

[Guest guest]

welcome to the group. I myself joind recently.

About how to search archives, go to

http://groups.yahoo.com/group//

sign in as a yahoo user, then do a search by typing a word (or a phrase) in

the " search archive " box. Also, to the left you will see options that you

can set for receiving the mails in the digest form. Or you can see if you

have to edit your profile. By the way, this information should also be in

the welcome message that you received when you joined the Group.

aumesh (father, son Raj -- 99 AIH, 02 suspect auto cholangitis)

[Guest guest]

Darin,

Thanks for the info ...

--- dpittman@... wrote:

> A few questions to the group:

>

> 1. Are there good/bad foods for the liver ?

>

> www.sandracabot.com

>      www.liverdoctor.com

>      www.whas.com.au

> The book is called The Healthy Liver and Bowel

> book .

>

> This was sent by Faith ('s Mom) on 11/25

>

>

> 2. Are there typical LFT numbers which can be

> associated with being

> listed for Tx ? (ALT, AST, ALK. PHOS., Albumin,

> etc.)

>

> Each tx center is different as for being

> listed. But to be moved up

> on the tx list, there has to be several indicators

> used as criteria that

> are extremely elevated (alk phos, billi, alt, etc.

> It doesn't necessarily

> have to be all of them.

>

> 3. Embarrassed to ask but ... how do I perform an

> archive search ?

>

> if you go to the website and click on

> " messages " it will allow you to

> do a search. Type in the key word of interest and

> it will list all related

> posts.

>

> 4. Someone in the group recently made reference to

> having our group

> messages in a digest form ... how do I do this ?

>

> Again go to website and on far right had side

> is " Edit my membership " .

>

> On the last two if you have not set up a

> profile with AOL, you will

> need to do so - if I am not mistaking.

>

>

> Darin

> UC-87, PSC-99, tx11/01

>

>

>

>

__________________________________________________

[Guest guest]

Thank you so much for posting this. There are just times I just

feel like such a burden to everyone and I try and try so hard, and I

can relate to you about not having custody of children because I do

not have custody of 3 of my children. Sometimes I wonder if I was

fit to even be a mother. I swear being abused as a child sure does

mess with your head, doesn't it?? I can just hear my father saying,

Lianne, you will never amount to anything, nobody will love you and

make you happy. Well, guess what?? I sure feel like he is right.

Darn him to h__ll and back. People just do not know what damage

they do when they say things to other people. I know I am the

world's worst about just popping the first thing that comes to my

mind out, and then having to apologize later for it, but the damage

is already done. Thank you . This made me feel a little

better and just wakes me up and makes me realize that I am not the

only one and there are others out there too.

hugs,

Lianne

-- In Fibromyalgia_Support_Group , Falzarano

<tenderheartbear32@y...> wrote:

> Decided to respond to all I have read so far instead of a million

emails to everyone..

> Margaret welcome back.. I am I just joined over the

weekend. Nice to meet you.

> Lianna ( hope I spelled right),

> Nice to meet you. I can relate a tad. I get so frustrated. The

whole month of August I was so bad off and literally was negging my

husband to commit me as I felt I was going insane. I was dealing

with pressure of trying to technically hide my disease as everyone

complained that I used it as an excuse. I was trying to be as normal

as I could and ignore all I was feeling pain wise. My nephew had

just moved up here and two days later hisgirlfriend moved in and

then two weeks after that her brother and then the first week of

Sept their dad. All by our choice to help us out with bills. My

husband explained to my nephew and his girlfriend about the FM and

the seemed to be okay with it at first. Then after about three

weeks they started treating me like crap becuase I couldnt do much

around the house so I started second guessing myself. I also had a

religious bring down in the past few years and it was topped out in

August of this year as well. I was to the point of thining

> maybe it was all in my head, I was worthless, I was a burden on

my husband. That I couldnt do anything right. And though I have

now gotten to the place where I am trying to just be myself and make

it through each day as it comes, it gets very frustrating as I still

have to fight the mes each day. I put my hubby through hell with my

depression moods and yet he still hangs on. I may feel like a burden

to him, but he says I am not. But then I have the rest of the

household. We can clean the place and then with in hours it is a

disaster again just between mynephew and the 17 year old. I see it

and become immediately stressed out and dont wnat to deal with it,

then it just keeps building up. They help make the mess but not

clean it up. And yet I am expected to do everything and they look

down on me if I dont ( except hubby) and then hubby ends up doing it

cause I cant and then the rest all look badly on me... it is a bad

cycle...

> I also have another stress ( to a point) I have 4 children. 16,

14,13,12 They do not live with me. Due to the abuse from my ex SS

removed them from the home and we lost parental rights. There is

alot more to it, but it is pointless to bring up. But when

birthdays roll around and holidays it is very hard. I have written

access to my older 3 but havent a clue to where my youngest is

except he is in Tennessee.

> So what I am trying to say is... we understand and we are sorry if

it seems we dont care from time to time. It gets rough for allof us

and sometimes people get overlooked. Please keep in mind it is not

intentional. And if you want to be heard... ( SAY I NEED HELP PLEASE

LISTEN in the subject line...) Dont know about anyone else, but It

would catch my attention and I would be looking at it.

> Okay I know I have rambled again.. my apologies everyone... Bad

habit!!! <bad rebecca, Bad rebecca> <grin>

> As to all else, hope everyone is having a good day so far. I am

actually alone in my house and enjoying the peace and quiet!!! till

hubby gets home.. but i can deal with him... aaahhhh peace!! LOL

>

>

>

> Check out my business Groups and pen pal group!!

> http://groups.yahoo.com/group/fancydecorandmore

> http://groups.yahoo.com/group/fancylabelsandmore

> http://groups.yahoo.com/group/thebestofglaobalpals2

>

>

> __________________________________________________

>

[Guest guest]

Thanks for the response. At first I took to big a jump from 120mg to 80mg with the Geodon. explained how it is best to go 5%-10% increments in order to taper off. I sure will be going slowly of Geodon now. I experienced some withdrawals when I made my first reduction to 80mg with the Geodon. Fatigue, fear-anxiety, restless, crying easily, irritable, little tolerance for noise, and feeling really out of touch with reality to name just a few. Tomorrow (Saturday) I see a new Doc who takes the holistic alternative medicine approach to help prescribe Geodon in smaller dosages. I'm afraid to go to my orginal prescribing Psychiatrist and tell her I've come off my antidepressant - Lexapro (been off 2 weeks completely now) and plan to work off of the Geodon and Klonipin. In my last visit with her 3 months ago she asked me not to go off any of my meds, I was doing better and to go off would cause a relapse. I had

already planned on coming off no matter what she said that's why I talked her into not seeing for another 4 months because if coming off my meds went well then I would eventually call and cancel my future appointment with her anyway. I hope this new doc is cooperative with my desires to come of my meds, because Tuesday I have to call my Psychiatrist and cancel my Thursday appointment. I'm too chicken to see her in person to tell what I've done. I shared with her once that I wanted to come off these 3 meds and she said no, and that I probably should plan on being on them for the rest of my life. She said there was no reason for me to come off them. When I did research on the side effects and dangers of staying on these drugs for long periods of time it scared me, tardive dyskneia (spell ?) and other permanent tremors etc.. I don't want this to happen to me. I've been on Geodon approx. 3 years now and I think that's plenty long

enough. My fear is that when I'm completely detoxed off these drugs that my psychological emotional problems will return, then what will I do. This is a scary thought for me. Right now I just can't think about that possibility because it scares me to think about having to live with depression, anxiety, and dissociative states without drugs. I hope I can. With the support of this group though gives me hope and encouragement that I can. Do you fear a relapse? Maybe it's just me and withdrawals speaking and not reality. I've been having some really weriod dreams about dying and creepy stuff like that since I've reduced my dosage of Geodon and Lexapro. I don't know what to think. Taking things one day at a time is the only way I can get through each day. I'm so glad you wrote me. I'll let you know how my appointment went with Dr. Leder (the holistic/nutrition docter) goes tomorrow. I hope your doing

okay with your recovery and withdrawals.

from land wrote:

Hi ,

I hope you are going very slowly in coming off the Geodon. I am coming off Zyprexa which is in the same class. It gives me so much hope to read about people who have come off all their drugs and are coping with life. If they can do it, we can too!

Something which has really helped me with the insomnia is to stop sleeping with my cats. It broke my heart to put them out of my room. I have never slept without a cat in about 14 years. But I am sleeping much better. Running the window air conditioner in my room also helps. I like the background noise. And I am also very careful to go to bed at the same time each night. I still have some nights when I am up most of the night, but it is not every night.

Hang in there,

__________________________________________________

[Guest guest]

; Your psychiatrist is a monster. She has no damn right to tell you that you must do what she says -- it is YOUR body and YOUR mind that these drugs are screwing with and YOU have the right to make these decisions. Tell this b**ch to go to hell; that you are sick of being doped up like a zombie and you are going to get your life under control without 38 pills a day. This doctor should be in jaill for doing this to you, or anyone. Where the hell are these doctors coming from? And why are so many people afraid to stand up to them when all they are doing is slowly killing you? These people are not your minders. They are your doctors and they work for YOU yet so many people are terrified of telling these quacks that they are discontinuing these dangerous medications. I don't get it. It's unconscionable what these doctors are doing. I'd be so outraged that I don't know what I would do, but I sure wouldn't be afraid to give these jerks a piece of what's left of my mind.

[Guest guest]

I'm also baffled why people think they have to OBEY a psych doctor who is recommending/prescribing mind-altering drugs to a person. 38 pills a day is mind boggling. I'd be writing to their professional board ... pronto.

Why in the world don't people think they have a right to say NO in the first place, and NO MORE to these mind-altering drugs? At this rate of 38 pills a day, there won't be much left of a person's mind.......... Take your power back. Be in charge of what goes into your body. Ask for alternatives to mind-altering drugs.

Just me.. Jan

======================

; Your psychiatrist is a monster. She has no damn right to tell you that you must do what she says -- it is YOUR body and YOUR mind that these drugs are screwing with and YOU have the right to make these decisions. Tell this b**ch to go to hell; that you are sick of being doped up like a zombie and you are going to get your life under control without 38 pills a day. This doctor should be in jaill for doing this to you, or anyone. Where the hell are these doctors coming from? And why are so many people afraid to stand up to them when all they are doing is slowly killing you? These people are not your minders. They are your doctors and they work for YOU yet so many people are terrified of telling these quacks that they are discontinuing these dangerous medications. I don't get it. It's unconscionable what these doctors are doing. I'd be so outraged that I don't know what I would do, but I sure wouldn't be afraid to give these jerks a piece of what's left of my mind. =======

=======

..

..

[Guest guest]

Subj:Re:

Date:7/2/05 8:21:08 AM Mountain Daylight Time

From: treblclef2@...

Sender: Withdrawal_and_Recovery

Reply-to: Withdrawal_and_Recovery

To: Withdrawal_and_Recovery

I'm also baffled why people think they have to OBEY a psych doctor who is recommending/prescribing mind-altering drugs to a person. 38 pills a day is mind boggling. I'd be writing to their professional board ... pronto.

Why in the world don't people think they have a right to say NO in the first place, and NO MORE to these mind-altering drugs? At this rate of 38 pills a day, there won't be much left of a person's mind.......... Take your power back. Be in charge of what goes into your body. Ask for alternatives to mind-altering drugs. Just me.. Jan

====================== Jan: After hearing literally thousands of stories like this one, I'm convinced that not being able to stand up to these abusive doctors is part of a person's problem that led them to psych meds in the first place. Being intimidated and bullied seems to be the way a lot of doctors treat their patients and I find it utterly appalling. But that doesn't mean one has to endure this kind of abuse. Perhaps the person who is afraid to stand up to these drug pushers has some kind of problem with authority figures, or low self-esteem, or feelings of no self worth. I'm not referring specifically to but to the broader spectum of patients who simply comply with their doctor's orders without questioning the drugs or the quantity prescribed. We're not supposed to cowtow to these doctors as though they were some supreme being in control of our existence and what we put into our bodies. The only smart thing I ever heard Lewinsky say was "You're not the boss of me!" when she was two years old, and I think it's high time that people adopt that phrase when their drug pushing doctors start with the mind games (and that is what this is). Of course, being stubborn and recalcitrant will get you labeled "non-compliant" but who gives a damn?? If I were I'd be saying to this doctor, "I ain't taking no more of your mind-altering pills, and oh, by the way, I believe that you have abused me and if you so much as dare to bill me for your abuse, not only will I report you to your local AMA, but I'm going to hire a lawyer and sue you!" These doctors have to be put in their place, which is NOT on some pedstal.

[Guest guest]

On one hand I agree that anyone has the right to go tell their doctor

to stick it if he is pushing meds on someone. Moreover, I agree that

more should and I also don't understand why more don't. However, do

whatever makes you comfortable . If you don't feel like

confronting him right now then don't. Do whatever you can to get

healthy the right way and as long as that doesn't include meds then

what suits others here may not suit you, so do what makes you feel

comfortable or tell me to stick it or others to stick it or whatever.

Point is your main priority is to be med free and healthy. All the

other stuff is secondary and can be dealt with in time. Just my

opinion. God bless,

Casey

[Guest guest]

--- " Ask for alternatives to mind-altering drugs. "

Jan, my doctors would say there aren't any! Or they would refer for

cognitive behaviourial therapy which is like a 6 month wait!

Regarding saying NO to you doctor, I think for so many years they

were hero worshipped by everyone. Always from a child in school at

home wherever, it was an attitude of doctor knows best.

Now I think people here in the UK are questioning , what is in the

drugs and asking first about side effects.

I went to GP, for my ear, he looked in it, first he was going to

give me drops for an infection that wasnt even there, then he was

going to give me antibiotics, then he was talking about taking a

swap, and finally he said if it is still painful come back next

week. If I hadn't questioned, I'd have ended up with drugs, for an

infection that isnt even there!!

I think knowledge and confidence is alot to do with people saying NO

to there GP..........if only everyone had access to and

Kim.

My GP finally acknowledged that the neurolgia in my ear, cannot be

treated in the traditional way, as their drugs make me so ill.

Yep, I think knowledge is a most powerful asset to us all.

God Bless

x

[Guest guest]

" Point is your main priority is to be med free and healthy. All the

other stuff is secondary and can be dealt with in time "

Couldn't agree with you more Casey.

[Guest guest]

Thanks guys and gals for the vote of confidence about these drug pushing Psychiatrists and doctors. I do need to be more courageous and stand up for my self and my beliefs. This has been a life long problem for me. I came to this psychiatrist naive, vulnerable, hurting, and desparate, which alot of people do, I was in no position mentally and emotionally to think clearly about what I would be gettting myself into by taking these drugs. I think docs should be required by law to educate their patients on the drugs they suggest a person should take and what the long term effects and damage that can be done in taking these drugs. They certainly shouldn't take advantage of a hurting and desperate patient like they do. It seems like these psychiatrists don't care enough about their patients to do the extra bit of time, effort, and research to educate the patient before starting any kind of drug regimen. I got

hooked on all those drugs and had no idea what I was getting into until 1 1/2 years ago when my father-in-law pointed out to me how dangerous and unhealthy it was to be on all those drugs and that there was a better way to deal with my problems, instead of just treating the symptoms with drugs. I'm thankful for my father-in-laws advice now.

,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,glitterari@... wrote:

Subj:Re: Date:7/2/05 8:21:08 AM Mountain Daylight Time From: treblclef2@... Sender: Withdrawal_and_Recovery Reply-to: Withdrawal_and_Recovery To: Withdrawal_and_Recovery

I'm also baffled why people think they have to OBEY a psych doctor who is recommending/prescribing mind-altering drugs to a person. 38 pills a day is mind boggling. I'd be writing to their professional board ... pronto. Why in the world don't people think they have a right to say NO in the first place, and NO MORE to these mind-altering drugs? At this rate of 38 pills a day, there won't be much left of a person's mind.......... Take your power back. Be in charge of what goes into your body. Ask for alternatives to mind-altering drugs. Just me.. Jan ====================== Jan: After hearing literally thousands of stories like this one, I'm convinced that not being able to stand up to these abusive doctors is part of a person's problem that led them to psych meds in the first place.

Being intimidated and bullied seems to be the way a lot of doctors treat their patients and I find it utterly appalling. But that doesn't mean one has to endure this kind of abuse. Perhaps the person who is afraid to stand up to these drug pushers has some kind of problem with authority figures, or low self-esteem, or feelings of no self worth. I'm not referring specifically to but to the broader spectum of patients who simply comply with their doctor's orders without questioning the drugs or the quantity prescribed. We're not supposed to cowtow to these doctors as though they were some supreme being in control of our existence and what we put into our bodies. The only smart thing I ever heard Lewinsky say was "You're not the boss of me!" when she was two years old, and I think it's high time that people adopt that phrase when their drug pushing doctors start with the mind games (and that is what this is).

Of course, being stubborn and recalcitrant will get you labeled "non-compliant" but who gives a damn?? If I were I'd be saying to this doctor, "I ain't taking no more of your mind-altering pills, and oh, by the way, I believe that you have abused me and if you so much as dare to bill me for your abuse, not only will I report you to your local AMA, but I'm going to hire a lawyer and sue you!" These doctors have to be put in their place, which is NOT on some pedstal. To subscribe to the off-topic list go to: http://groups.yahoo.com/group/socialWandR/

[Guest guest]

Well, all I have to say is what is a support group for anyway!!??

To share problems and share advise, as well as accept it from others.. Otherwise you have a delete button!! In honest support...Sandie S.

[Guest guest]

Post Nasal Drip - something of a pest for most of us with bronch, causing infx to spread from having a head-cold to lungs; and also throat irritation causing extra coughing ....  just another little nuisance!! Happy breathing  JJoy -- -- "Wealth is nothing, position is nothing, fame is nothing.Who you become inside is everything.What happens to you is not as important as how you react to what happens."

[Guest guest]

Hi

How do you use the tumeric. I try and have it regularly in cooking but how much and how do you take yours?

An Indian man told me bout its healing properties

chers lee

[Guest guest]



I have been unable to access the archives since joining this group. Could someone please tell me how to do that. Janice Judson - huskeryank@...

I am interested in corresponding with other members thru e-mails one-on-one. I have just recently discovered I have bronchiectasis and I sure would appreciate learning how other people are being treated and how they are handling this serious disease. thank you. huskeryankmsn (DOT) com

[Guest guest]

The one thing I can tell you about CF patients is that my son's CF/ Bronchiectasis nurse @ Mayo Clinic says that she has several CF patients in the their 30s and 40s. She said that she even has some in their 60s! One lady is a teacher so she tends to get infections from her students more often than Mayo would like to see, but she's in her 60s and still doing well enough to work w/ CF!! That nurse said that 2 things have helped SO much: The Vest and Pulmozyme- nebulizer. As well as, of course, the newest anti-biotics that we are all so grateful for.

[Guest guest]

Hi Karina,

I am sorry that your son has been diagnosed at such ayoung age with this disease. I was diagnosed 4 years ago in August. I am sure from my symtoms that I had it for at least several years before the diagnosis. However, I am in my 60's.

I teach and have a student who was diagnosed with it. He had a lung infection at three years of age and has suffered from this ever since. He plays hockey and actually went to Sweden this summer to play. Several years ago he suffered from a lot of infections but lately he has been healthier.

His family have worked with a children's hospital and doctors that specialize in cystic fibrosis although he does not have that. He does take many of the medicines that children with cystic fibrosis do.

My bronchiectasis is diffused. As Joy already said, someone with bronchiectasis that is not diffused can have the part of the lung that has it removed. Of course you would want to check with doctors about that.

This group has been helpful to me. Just finding out how to deal with the disease as well as treatments that others have tried is very useful for me personally.

Welcome to the group.

Cindi W.

[Guest guest]

Hi New Member,

It is nice that you want to find out more to help your mom. This group is very knowledgeable and helpful.

Welcome.

Cindi W.

[Guest guest]

Hi Cris,

Welcome to the group. I have learned so much from this group. It is difficult to deal with psychologically but it helps to know that others have been able to manage this disease.

Cindi

[Guest guest]

I was just wondering how many of you who had tethered spinal cord also suffer

with chiari malformation? I would like to know the kind of sysptoms anyone has

had?

[Guest guest]

- I was screened for chiari (with an MRI) since I had TC pluse all sorts

of other symptoms (chronic headaches, photobia, dizziness, ear fullness,

fatigue, etc.). But my brian MRI was normal. I think anyone with symptoms such

as these should have a brain MRI to rule this out, as these conditions can be

concurrent. I think there is at least one person in this group who's chiari

symptoms were helped with the TC surgery.

Dee

To: tetheredspinalcord

From: wenrn68@...

Date: Sun, 27 Feb 2011 10:15:33 -0800

Subject: RE:

I was just wondering how many of you who had tethered spinal cord also suffer

with chiari malformation? I would like to know the kind of sysptoms anyone has

had?

[Guest guest]

e - Venzuela! Sounds exciting. Glad to hear Sammy is doing well in school and you are so fortunate to have a school with an ESE program. Hopefully he can play baseball again this summer. He sounds like quite a guy. I have a granddaughter who will be 9 this month and it's great age. Kids these days are so darn smart!!

When I return to IA - Sioux City, I am going in to see my Dr. with a briefcase full of information I have received from you all. I have so many questions to ask. For years we wintered in AZ but 3 years ago we started to come to the gulf @ The Caribe Resort in Orange Beach, AL - near Pensacola, FL. It is not as warm as AZ but we love the water. We have many friends who winter here also, so it is nice for that reason. We should be home on the 20th.

[Guest guest]

Hi. I don’t want you to smoke. So I can help you to rid of this habit!..

http://alpha-photo.fr/page.php?zID=61ar3

[Guest guest]

Kay--I, too, will be in Rochester in early May--arriving on the 4th until ?. This time the visit is for my fella. And we have not booked a return because we want to do some exploring in Minnesota. It's a lovely state. Is there a chance we can meet up? D.

Think you must be talking about another member!

Kay