Recently Diagnosed

October 2, 2001

I agree with you Carol. If anything, this forum scares me more than

helps me. My doctor performed the cholesteatoma removal and

reconstructed the middle ear bones all in one surgery. He's

confident he got all the infection and that I'll regain at least the

hearing I had before the surgery. I should also be able to get the

ear wet in time. And the c-toma rendered my ear a mess (his words)!

My otologist performs about 300 of this type of surgery per year.

Since I had this surgery on August 16, my hearing is improving ever

so slightly. I visited him last Friday, and he says the gel packing

still hasn't dissolved yet, and to give it a few more weeks. I

believe him because sometimes when I yawn I hear a rush of air move

into the middle ear, and things seem louder.

Carol, do you by any chance see your doctor at the medical center in

Houston?

P.S. I understand this condition is more traumatic if it's your kid,

but as a young adult, I'm really not terribly worried.

> I joined this group to become more informed about a condition I

knew little

> of. I have recently been diagnosed with this bilaterally. It

appears that

> most of you have terrible experiences to relate!

> I'm curious...have all of you had surgery by an otologist? My

otologist

> performs 5 to 7 cholesteatoma surgeries per week. He rarely has to

do more

> than 2 surgeries per ear. Hearing is usually restored to normal

after the

> second surgery unless there has been nerve damage. Almost

everything I'm

> reading from this group is contrary to his statistics.

> Also, the surgeon I am seeing is unusually open and accessable. (I

have his

> home phone number, cell phone number, and pager number as well as

his email

> address!)

> Maybe I'm just lucky to have found such an experienced surgeon. I'm

not

> looking forward to any of the procedures, but I'm grateful that I

live in an

> area that gives us so much access to some of the best medical

facilities in

> the world.

> I'm going to keep reading...and hoping that all goes well for

you...and for

> me.

> Carol

October 2, 2001

Hi Carol,

Welcome to the group! It sounds like you are in very good hands and

have either asked some very good questions or have a doctor that

shares information that will comfort a patient (imagine that!!)

What area are you in?

Well, I had to dig out my doctor's business card to find out that -

yes my doctor is an otologist. He also performs many of these

procedures each week, but I don't know statistics on numbers of

repeat surgeries or hearing being restored.

I was just diagnosed in March, so I'm relatively new to all of this,

too. Have you had a history of ear problems? Will you have both

ears done at the same time? Can they even do that?

Good luck and keep us posted.

October 2, 2001

Hi Carol, and welcome to the group. Unfortunately, as I'm sure you've read, not many (if any) of us have the kind of optimistic statistics that your doctor has. Hopefully you will have an easy and succesful surgery. My daughter's doctor is an Otolaryngologist. Good luck to you and please keep us posted!

October 2, 2001

thanks for something hopeful. it is difficult to read of the

struggles everyone endures with this thing.

my nephew just went back for post-op visit (s/p repair of hole in ear

drum). jeez, the kid is just learning how to blow his nose &

possibly that is what did it! packing still in place & will be left

in for another week. continuing drops.

by the way, while we are grateful for an excellent teaching facility

w/specialists in our area, do not be shy about setting limits. after

7 yrs of surgeries, my sister has finally told the interns &

residents " dont mind if you look but no NO PROBING, PICKING OR

SUCTIONING except by DR. X " . it proved invaluable this week when one

was going to just go ahead & remove that packing. she said " no we

will have to wait for dr x on that " . turns out dr x did NOT remove

the packing.

AARRGHHHHH!

October 3, 2001

Carol...hello....where are you based???

surely not the UK....a home phone number...lol.....a mobile number???...lol

please let me know!

thanks

julie (frankie's mum)

October 3, 2001

I think the problem is we are all, or most of us, in the middle of

this right now. I too would like to hear success stories. I read

and heard from my own doctor many success stories. If my son has a

successful surgery next month and the hearing is restored to near

normal and doesn't see regrowth for along time, I want to forget

about it and to be honest, not visit any more sites. In children I

heard it is more agressive, 50% chance of regrowth. To me, that

means 50% success right away. I think there are numerous success

stories out there and maybe someone can get the oto... to post them.

Good luck to all upcoming surgeries and the cup is half full.

Off topic to our England friends: Listened to Tony Blair yesterday

and thought he was tremendous.

October 7, 2001

I live near Cleveland, Ohio USA.

I have worked in hospitals for 25 years...this is the first time that

I have heard of a physician who gives his patients so much access. So

far, I am very impressed with his services. Now all that remains is

to see how the surgery goes! (He even has his home phone number on

his web page!)

Carol

> Carol...hello....where are you based???

> surely not the UK....a home phone number...lol.....a mobile

number???...lol

> please let me know!

> thanks

> julie (frankie's mum)

October 7, 2001

Hi, this is Michele and I live in Klamath Falls,

Oregon. I also have all of my doctors #'s (office,

mobile, pager, and home #) and he has told me to call

anytime. We have complete access to him. Once he was

vacation when I called him.

Michele

--- cmschulz@... wrote:

> I live near Cleveland, Ohio USA.

> I have worked in hospitals for 25 years...this is

> the first time that

> I have heard of a physician who gives his patients

> so much access. So

> far, I am very impressed with his services. Now all

> that remains is

> to see how the surgery goes! (He even has his home

> phone number on

> his web page!)

> Carol

>

> > Carol...hello....where are you based???

> > surely not the UK....a home phone

> number...lol.....a mobile

> number???...lol

> > please let me know!

> > thanks

> > julie (frankie's mum)

>

=====

Call 911, some sucker just stole our water!!!!!!

__________________________________________________

October 18, 2001

I would just like to tell you that my son's surgeon is an Otologist,

and I felt very comfortable with him just from meeting him once. He

seemed to take more time with us than his former Pediatricians and

his ENT doctor. He also told us, after our initial consultation, to

call him anytime if we need anything or have any questions. He also,

knowing that we were very worried about the whole thing, encouraged

his office staff to schedule the surgery as soon as possible, even

though he was booked for surgery for over 2 months! They called me

the next day with a date of November 5th as opposed to late December

or early January.

Also, I agree with what somebody else said about most support groups

being a little on the negative side because the people that are

seeking help or had problems with their cholesteatoma are the ones in

need of 'support'. I, for one, no matter how things turn out with my

son's surgery, will continue to be a part of the groups. Whether

it's because I need more 'support' or to give other people hope.

> I joined this group to become more informed about a condition I

knew little

> of. I have recently been diagnosed with this bilaterally. It

appears that

> most of you have terrible experiences to relate!

> I'm curious...have all of you had surgery by an otologist? My

otologist

> performs 5 to 7 cholesteatoma surgeries per week. He rarely has to

do more

> than 2 surgeries per ear. Hearing is usually restored to normal

after the

> second surgery unless there has been nerve damage. Almost

everything I'm

> reading from this group is contrary to his statistics.

> Also, the surgeon I am seeing is unusually open and accessable. (I

have his

> home phone number, cell phone number, and pager number as well as

his email

> address!)

> Maybe I'm just lucky to have found such an experienced surgeon. I'm

not

> looking forward to any of the procedures, but I'm grateful that I

live in an

> area that gives us so much access to some of the best medical

facilities in

> the world.

> I'm going to keep reading...and hoping that all goes well for

you...and for

> me.

> Carol

October 21, 2001

carol,

please keep us posted on your progress with this doctor. hearing

restoration being a paramount concern here. we need success

stories.

nancy

June 18, 2002

Hi Jolene, wow that is a challenge. My opinion is that T4/T3 drugs work

best and I like the older drug Armour thyroid. (Synthroid is T4 only and not

FDA approved but has been very well marketed). The right medicine can make

all the difference. Many of us have a real struggle to find a knowledgeable

doctor. I think there must be a group for parents of hypo children, and

they would probably be of more help. Have you seen www.thyroid.about.com

and www.brodabarnes.org?

Gracia

> My daughter, Allyson, was born April 8, 2002 and diagnosed on April

> 17, 2002 with Hypothyroidism. She is currently on Synthroid and

> still having difficulty gaining weight. She seems to be developing

> normally but she is still about 2 pounds under weight. I just

> wanted to introduce myself and try and find others with this

> condition. I would love to ask questions of an adult who has

> hypothyroidism, so I can get an idea of what to expect as she grows

> older.

>

> Thank you very much for your time.

>

> Jolene mommy of Allyson Kayla.

>

September 16, 2003

Unfortunatly, if the psoriasis goes away the arthritis will not, and if

youre having a mild week with your arthritis your psoriasis will not

nessisarily clear up. Like other forms of arthritis, PA is pretty much

permanent, although I have had my psoriasis go into remission for almost a

year, and know someone whos psoriasis has been in remission for nearly 20

years. MTX is methotrexate, and I was on it for a year. Like most drugs,

MTX works for some people but not others. My doc told me it was a form of

chemo treatment but the dose was like a drop in the bucket. I cant remmeber

how much i took but it didnt help. Embrel and remecide are also popular

meds, but as i have not been on them or researched them i dont know anything

about them.

>From: " smstjo2000 " <smstjo2000@...>

>Reply-

>

>Subject: [ ] Recently diagnosed

>Date: Tue, 16 Sep 2003 01:54:07 -0000

>

>Hey, 32 year old farmer on the coast of Louisiana, just diagnosed

>with this crap. I've had psoriasis forever and have had one toe and

>one knee swollen up and hurting for several years. Needless to say

>the doctors down here in the swamp arent' the best and it was really

>my mom who is an RN who finally figured it out. I have lots of

>questions. Especially what I can expect in the future. I am a

>farmer and work very hard physically everyday. Can this disease be

>put into remission? If you can get your psoriasis under control

>does the arthritis go away? What is MTX that everyone seems to be

>taking. I have about 1000 other questions but if I can get some

>straight poop on those It would be a good start. Thanks

>

_________________________________________________________________

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September 17, 2003

In a message dated 9/17/03 2:04:56 AM Eastern Daylight Time,

goat_46804@... writes:

<< and know someone whos psoriasis has been in remission for nearly 20

years. >>

Do you know what they did to have this happen, or was it just luck?

Thanks!

September 17, 2003

Can this disease be

> put into remission? If you can get your psoriasis under control

> does the arthritis go away? What is MTX that everyone seems to be

> taking. I have about 1000 other questions but if I can get some

> straight poop on those It would be a good start. Thanks

Hi there,

This disease is different from one person to the next. The drugs

that control the disease have different effects from one person to

the next. I am not sure if full remission is possible. My own goal

is to control the disease in order for me to maintain a normal

desirable lifestyle. MTX is Methotrexate. It's one of the drugs

used to battle P & PA. I've been on a low dosage of 10mg per week

for about 20 months. I went from barely able to walk to normal with

no side effects. For others, it has little effect or they experience

bad side effects. See a Rheumatologist, Ask 1000 questions, get as

much info as possible. Then choose how you want to deal with your

disease.

Stay Well,

Editor's Note: This is to agree with , just adding that: Yes, PA can go

into remission; how complete that will be depends on how much damage has been

done. Complete ( & permanent) remission is very rare. Remissions can last for

years; my longest remission lasted half a decade. On the relationship between P

and PA: There appears to be little or no evidence controlling one will control

the other; they seem to be independent actors.

D.]

September 18, 2003

--Hi Mickey,

I have been told both by different Docs over the years. Also, a

psoriasis foundation educator told me that one subset was known more

for improving when the skin cleared up. Due to brain fog I can't

remember which subset it is. A rheum I saw said they operated on a

general theory that the psoriasis caused the arthritis: I was

surprised to hear that one , couldn't put it together in my head with

what I know about the illnesses. Maybe someone else in the group

can. My own experience shows no correlation. Maybe you will be

different and have positive results all around. I sure hope so.

Regards,

Marti

September 19, 2003

For the PA to go into remission, she was on cortisone and was a farm girl so

she got lots of sun, plus some topical stuff that i cant remember what its

called. For it to stay in remission she used a combo of tanning and pure

luck.

>From: pookiegut@...

>Reply-

>

>Subject: Re: [ ] Recently diagnosed

>Date: Wed, 17 Sep 2003 11:25:23 EDT

>

>In a message dated 9/17/03 2:04:56 AM Eastern Daylight Time,

>goat_46804@... writes:

>

><< and know someone whos psoriasis has been in remission for nearly 20

> years. >>

>

>Do you know what they did to have this happen, or was it just luck?

>

>Thanks!

>

_________________________________________________________________

Use custom emotions -- try MSN Messenger 6.0!

http://www.msnmessenger-download.com/tracking/reach_emoticon

September 19, 2003

In a message dated 9/18/2003 6:25:57 AM Eastern Daylight Time,

michaelszczygiel@... writes:

> Is that a definite( I hope not), as I have always understood it, the reason

> we are treated by the Derm as well as The Rheumy, is that it has been noted

> by a lot of Dr's that when the Psoriasis has cleared the

> arthritis symptoms

> have disappeared or become much milder.

In my case the Enbrel cleared up the P but did not help the PA. The rheumy took

my off it and now the P is flaring again. I am going to see what the Derm says.

Janet

September 19, 2003

They may both clear up (not flare, go into remission, whatever), but from

what I understand, youre pretty much stuck with both diseases for life. At

least, this is true for PA, like other forms of arthritis. If you get one

or both under control for life, kudos! And let me know how!

>From: michaelszczygiel@...

>Reply-

>

>Subject: [ ] Recently diagnosed

>Date: Thu, 18 Sep 2003 11:25:57 +0100

>

>Unfortunately, if the psoriasis goes away the arthritis will not,

>

>Hi

>

>Is that a definite( I hope not), as I have always understood it, the reason

>we are treated by the Derm as well as The Rheumy, is that it has been noted

>by a lot of Dr's that when the Psoriasis has cleared the arthritis symptoms

>have disappeared or become much milder.

>

>I can't be sure for certain, but this is what I was made to believe by Both

>my Dermatologist and My Rheumy ? I would be interested to hear what

>other's

>on here think or have experience of ?

>

>Micky

>London

>

>[Editor's Note: There are some (docs and PA people) who believe there is a

>correlation between P & A--that when one moderates/clears, the other may do

>so as well. And PA is just perverse enough to occasionally, for some

>people, clear up both together. Of course, after the next flare, either the

>P or the A will hang on forever, just to prove to you, you can't count on

>anything with PA. Sorry to be so negative, but I think most of us would

>agree...

>

> D.]

>

>Please note: All Business of whatsoever nature, be it as agents or

>principal, with any party whatsoever, shall solely be conducted in

>accordance with BIFA Standard Trading Conditions.

>

>These conditions have clauses which may limit or exclude our liability and

>a copy is available on request.

>

>==============================================================================

>

September 20, 2003

I don't think that statement is true. Many people go into PA remission but

their P is still bad, and many people see their P clear up from time to time

but not their PA. In addition, not everyone with P develops PA and not everyone

with PA has extensive P. I therefore question why a lot of doctors would

connect the dots when it is not supported by empirical evidence. There are SOME

cases where both clear concommittantly, but there are many cases where they

don't.

Kathy

<< Is that a definite( I hope not), as I have always understood it, the reason

> we are treated by the Derm as well as The Rheumy, is that it has been noted

> by a lot of Dr's that when the Psoriasis has cleared the

> arthritis symptoms >>

October 7, 2003

Hi ,

Welcome!

The biggest resource for info is http://thyroid.about.com

Shomon's site. Patients are treated with Synthroid (T4), Cytomel

(T3), Armour thyroid (desiccated pig thyroid) or other natural

medications, Thyrolar (T3 + T4) or any combo of these medications.

The main dietary changes are avoiding soy and uncooked brassica

vegetables (broccoli, brussel sprouts), and watching iodine

consumption. Too little and too much hurt thyroid function. Since you

have Hashimoto's, most of us also take supplements to help control

the antibodies. A multi, C, selenium if the multi doesn't have at

least 100mcg, and whatever else the multi doesn't have at least 100%

of (in the case of my multi, it is very low on E, so I take that

separately) and extra EFAs are pretty standard. Others also take

other stuff, like CoQ10.

Jan

> Hi,

>

> My name is , I am 25 years old and diagnosed about a week ago

> with Hasimotos Disease and Pernicus Anemia. This diagnosis was

such

> a great thing for me... it just explained SO much and made me feel

> like the depression, fatigue, weight gain, everything that was

> happening to me, was because of a REAL reason!

> So now I am faced with the challenge of treatment. I have an

> endocrinologist and we have a follow up appointment in a few weeks

> (he wants to run a few more tests before we decide on a plan) to

> discuss treatment. He did mention Synthroid to me. I of course

want

> to know everything there is to know about Synthroid. I would love

to

> hear from people who are on it, pros and cons, and if there are

other

> medications that people take. I am also interested in hearing

about

> alternative medicines or dietary changes that I could make to help

my

> immune system.

>

> Any advice would be greatly appriciated!

> Thanks,

February 9, 2004

k1p1braz@... writes:

<<I just cry a lot as I

amso frightened of what could happen to me if I don't take it and

also of what could happen to me if I do. My hands are so stiff and

uncomfy most of the day, I am also having problens with my wrist and

one foot. I just want to run away from it all - I feel so useless.

How long does it take to come to terms with PA>>

I'm so sorry you are feeling that blue. I live in the U.S. and there are

days that I feel like crying also. I also did not want to take any meds but I

then decided that I would rather take the risk of the side effects then live

the way I live. I tried Enbrel with no success and still in constant pain. I

just started Zoloft for pain of fibro. Don't give up. From what I hear Enbrel

would have less side effects then mtx. You may eventually come to a point

like I did and try the medication just to stop the constant pain. I am now

looking into finding a new rheumy because I am not satisfied with the present.

Janet

February 10, 2004

k1p1braz@... writes:

<<My rhematologist wants me to go on methotrexate,

but I am so frightened of the side effects.>>

Hi, have you thought about an alternative medication? There are a few other

DMARDs...I have just started azulfadine as the side effects are not as severe,

as long as you can tolerate sulfa drugs.

February 10, 2004

Brazuk96,

I read your posting and I understand what you are feeling. I was

diagnosed a couple of years ago when I was in the early stages. I

started out taking NSAIDs then went to indomethacin and now

indomethacin with MTX 20mg. I was really nervous about starting the

MTX because of side effects. But what I realized is that the drug

companies need make sure they are covered so they list all possible

side effects that can happen. When my Rhuemy talked to me about MTX

what he said was, yes, these things can happen but with proper

monitoring (ie blood work monthly) he will see any potiential

problems before they become problems. I started MTX last September

and even though things are not perfect they are a heck of a lot

better. My two fingers are still swollen but they don't ache or are

hot they way they were and the ball of my right foot is no longer

swollen and I don't need my cane to walk anymore. I am taking

Prevacid to block the nausea and I just plan around the day after I

take the MTX (I take MTX on thursday and on friday I feel kinda

crappy- like I have the flu) So I make friday my light physical

day. I have a 9yr old and a 2yr old to keep up with and with MTX I

am able to do that.

Ann

Subject: recently diagnosed

I was diagnosed in September 2003, and I am finding it difficult to

come to terms with. My rhematologist wants me to go on methotrexate,

but I am so frightened of the side effects. I just cry a lot as I

amso frightened of what could happen to me if I don't take it and

also of what could happen to me if I do. My hands are so stiff and

uncomfy most of the day, I am also having problens with my wrist and

one foot. I just want to run away from it all - I feel so useless.

How long does it take to come to terms with PA? Anyonelse in the UK

out there?

March 5, 2004

We can certainly all understand how confused and frightened you must be right

now. A diagnosis of PA is a scary thing and the medicines that work for many

sufferers are not without risk. I've always believed that the best way to quell

my fears is to become informed so that I can eliminate my imagined concerns from

the things I really need to focus on. There is a lot of information here and on

the web about the benefits and potential drawbacks of methotrexate. It has been

a godsend to many people and it has been used for over twenty years so all the

long term consequences are widely known. It is a very good medication for some

- but not for all. It can give you your life back, not work at all, or cause

side effects. You will be closely monitored through regular blood tests once

you begin MTX, so you needn't fear that you will be doing damage without knowing

it. Listen to your body and be sure to let your doctor know if you are

experiencing any adverse reactions to the medication. If you have specific

questions once you are on it, you can always turn to the people here to see what

their experience has been. You won't be taking this journey alone. In the

event you are not happy with MTX, there are other very good medications

available today and the chances are that one of them will help ease your

suffering.

I would also encourage you to go to the Arthritis Foundation's web site

(www.arthritis.org) and the Psoriasis Association's web site

(www.psoriasis.org). You will find a lot of information. There are support

groups you can join, exercise programs you can take advantage of, dietary advice

you can heed and lifestyle changes you can make which will all contribute to

your sense of well-being.

As has oft been said, arthritis isn't a death sentence but a life sentence. By

educating ourselves about our disease and the options open to us, by maintaining

a positive attitude and by choosing to focus on the things we can do rather than

the things we can't, a life sentence with arthritis can mean a life that is

rich, full and very worthwhile.

Wishing you wellness,

Kathy F.

I've never joined one of these groups before so please bear with

me. I was diagnosed with Psoriatic Arthritis one week ago today. I

wasn't surprised but am still hoping it could be a flare up from

when I was treated for Lyme several years ago. (Then again, maybe

the Lyme was really PA). I'm very confused and scared and am trying

to get as much information as possible before going back to the Dr.

in 2 weeks. I've been on Vioxx for a week and it seems to be

helping quite a bit. My Reumotologist has suggested starting

Methotrexate in 2 weeks. I'm terrified.

March 5, 2004

Dear Recently diagnosed,

I understand the terror of hearing you have a progressive disease. For a

lot of us, finding out our strange symptoms have a name does help. I’ve

been living with PA now for almost 6 years and only knew for sure what was

wrong about a year ago. I wish I could say the past year has been great,

that they found the perfect drug and I’m out dancing every night….but of

course that’s not the case. I’ve had problems moving from drug to drug and

so far haven’t found one that has helped me. It is scary to think of the

side effects of some these drugs. But it’s also scary to think of your

bones getting weaker and the damage getting worse.

I haven’t been able to work for almost 4 years or driven a car for over 2.

My life went from working full time with my husband in our business to

barely able to get out of bed some days. There have been days when life

hasn’t felt worth the hassle, but I’ve found that even with a restricted

life, you can find happiness. I have a family who loves me and wants me

around regardless of my condition. It has been a major adjustment for all

of us since I can’t do what once could. I also am dealing with asthma,

fibromyalgia, erythromelalgia, RSD, and just recently found out I have

congestive heart failure. I’m only 48, which seems to young to me to have

all this wrong, but I’m dealing with it the best I can.

I’m getting ready to try Humira, which scares me because I had a severe

reaction to Enbrel, but not taking it is scary as well. I’m not telling you

all my problems to scare you, but to let you know that even with all of this

“stuff” life goes on. How we deal with it is the whole thing. I decided I

didn’t want to be miserable with my problems. I still have the problems,

but I do my best to not be miserable. I’m in pain management for the pain

and that has been a huge help and relief. I don’t know if I could have made

it without their help. I never would have thought I’d be on pain

medication for as long as I have or that I ever would even need pain

medication. But again, it’s one of those things I just have to deal with

and realize life goes on.

Joining this group is a positive step. There are some sad stories and a lot

of people are in pain, but most of us are really strong people who refuse to

give up. We keep trying to find help or solutions to our problems. We may

get frustrated from time to time, but most of the time, we keep going on.

Find a doctor you like and one you can talk too. It has taken me 5 doctors

to find one that finally knew what was wrong with me. I’m still not

thrilled with this doctor, but I’m giving him a little longer to help me and

find the right drug. If not, then I guess I’m off to the Mayo clinic or the

Cleveland Clinic.

I guess what I’m trying to say, in a long rambling way, is life goes on and

it gets easier with time. Just hang in there and read as much as you can.

Reach out when you need help and don’t be afraid to ask questions or ask

your family for help. Enjoy life today since tomorrow isn’t always there

for anyone. When you think about it, most of the time, today is all we can

be guaranteed and being happy now is the best way to live your life.

Take care and write me anytime. Sincerely, Fran in Florida

[Editor's Note: Great letter, Fran; recommended reading for the newly diagnosed

and/or those new to our site. :-}

D.]

[ ] Recently Diagnosed