Recently Diagnosed

March 5, 2004

Dear Wodell --

You are correct to educate yourself as much as possible and this is a good place

to start. If your doc is correct and you have PA it will have a tremendous

impact on your normal life but it is manageable. It will require medications

that you won't want to take, it is manageable. It will cause you to go through

unbelievable emotional ups and downs, it is managable.......and we can help. I

hope you keep posting so we can.

Cheri :-))

[Editor's Note: I'm with you, Cheri; I think our new member is off on the right

track. So, " Wodell, " we have a pretty good idea as to where your thoughts are

taking you, and also of your levels and flavors of fear. All I can tell you for

now--because you'll need to experience, rather than just be told, " it " --is that

the confusion, the terror, et cetera, that you're feeling right now will shortly

be reduced. I promise.

D.]

[ ] Recently Diagnosed

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.

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

Also,in August 2001,list member Jack aka Cornishpro@... began to

conduct extensive research which he publishes as the " Psoriatic Arthritis

Research Newsletter " , monthly in our email and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage as well as the

archives of the list.

Don't forget that the list archives comprise a tremendous amount of

information (Over three years of messages and answers).Feel free to browse them

at your convenience.

LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or

question, chances are there is a person who has been around a while who can help

you out with AT LEAST an educated guess for an answer! If not,we can steer you

in the right direction with a good website to go to,

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

Orin, List Editor

, List Editor

and any others who help in any way (thank you!)

March 7, 2004

Hello Mike, glad you found this site. It was a huge help to me 2 years ago

when I was diagnosed and continues to aid my " Mind, Body and Emotions " as

you put it. I am new to Enbrel too and it is doing a good job for me. I

don't have as much skin involvement as you do but what I do have is

miserable so I really feel for those, like yourself who have so much. I

look forward to hearing more from you. Cheri :-))

----- Original Message -----

> Hi My name is Mike.I have been lurking out there for about 3 months now.

I'm 45 yrs old

March 8, 2004

Donna II,

Feel free to email me off list if you like... I am in Oklahoma City. DeafEskie

@ cox. net (remove spaces).

That invite to chat via email goes out to anyone who would like to and may be

on Enbrel......

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

March 8, 2004

Hey, Donna II, I'm from OK also. So welcome to both of you. Sylvia in Cushing

January 9, 2005

Hi Heidi! Sorry to hear of health troubles, but welcome to the group...

You most definately WILL feel better! It did not take long for medication

to kick me into gear. I would say a week at the most, before I started

to notice a change...I am definately not 100% where I used to be, I still

tire more easily than I did before, however I absolutely felt human again

very soon after beginning medication. It can be difficult to be patient

when you feel so out of control, and helpless. You are on the right

track!

best wishes!

.

January 11, 2005

waldenworld <waldenworld@...> wrote:

Hi,

I just joined this group, since I've recently been diagnosed as

having Hypo/Hashi. It's come as a huge surprise to me. Until a

few months ago, I have always been very very active, with plenty

of energy. I'm only 31 years old, and, thinking I had mono, went

to the doctor. My TSH (or is it THS?) level was around 50. I'm

now on Synthroid 75mcg (this is the first week). Aside from an

occassional cold, I'm never sick. I almost never take any drug,

including aspirin, ibuprofen, etc. Anyway, this is all kind of new to

me, and I'm trying to get as much info as I can. I just read that

soy products can be harmful, as are certain vegetables. I'm a

vegetarian, so this news is rather depressing for me. I think tofu

is one of my favorite foods.

I guess mostly I'm wondering about when I will start to feel

better. It's been really hard for me to adjust to doing very little.

I'm a high school teacher, so all my energy is used just to make

it through the day now. I come home and lie on the couch for

hours. I feel very restless and helpless and am getting

depressed because I can't do things I want to do anymore.

Anyone got any advice? How did you make it through the first

stage? Now that I have been diagnosed and have started

Synthroid, it seems like I'm just waiting for the clouds to part.

Does it happen?

Sorry this is such a ramble. Thank you to anyone who reads this

and/or responds.

Heidi

January 11, 2005

Heidi,

You wrote:

> ... My TSH (or is it THS?) level was around 50. I'm

> now on Synthroid 75mcg (this is the first week). ...

Your TSH will start down on this dosage, but you probably won't really

start to feel normal until you get to at least double that dosage,

depending on your body mass. The recommended waiting period for the next

dose increase is six weeks, but I would suggest you find an excuse to

visit the doctor two weeks early. At your age and with good cardiac

health, he should let you increase a little faster. The sooner you get

to a full dose, the sooner you will feel better.

> ... I just read that

> soy products can be harmful, as are certain vegetables. ...

Keep reading. This is correct. However, if your thyroid is completely

replaced (likely, considering your TSH) you may eventually tolerate

small amounts of soy without problems. Especially read about how and

when to take your medication, as mistakes can cause large fluctuations

in absorption. Also, stay away from green tea.

>

> I guess mostly I'm wondering about when I will start to feel

> better. ...

Most of us felt a little better each time the dosage increases, but you

really won't come out of the forest until you approach your maintenance

dosage, if then.

> ... I feel very restless and helpless and am getting

> depressed because I can't do things I want to do anymore.

This is all par for the course. Depression is part of the drill. Avoid

heavy exercise for the time being, as this will only make things worse

by using up what little T3 you have in your system. Exercise won't

" energize " you the way it used to.

>

> ... How did you make it through the first stage? ...

With gritted teeth.

Suggestions: Keep reading. Our list archives and web pages cited there

will be useful. Eventually the light will dawn for you too. Just hang in

there. Try to be extra patient with your students and loved ones right

now. Feeling miserable will reduce your abilities to listen and

empathize. I remember being short tempered during the first stage, which

was distracting at best in the classroom.

Chuck B.

January 11, 2005

Heidi,

It takes a while for Synthyroid to work... about 6wks to 2 months. It has

to build in your system. I did not do well on it but some do. I still felt

very tired and had bone aches on it. After I changed to Armour (natural

form of the drug) the bones quit aching and I found that I could maintain a

more stable dosage on Armour. Synthyroid I was never on the same dose for

more than 2 months. The doctor would either have me hyper or hypo on it. I

even had one doctor argue with me that I was blaming everything on my

thyroid and I told him...pull my chart and you will see that I have NEVER

been balance on that drug for more than two months. He pulled and was

surprised to confirm what I said. From there I had done enough research to

know that I wanted to change drugs. Once I switched, I have done much

better and have been stable on the same dose for almost 9 months now. My

advice for new patients is to give your doctor the data he/she needs to

adjust your meds with. They will use a TSH test most of the time which is

not very accurate on how you feel and is useless in my opinion and many

other doctors feel the same. The TSH labs should be a guide for your doctor

not the determining factor on your dosage. I would recommend that you keep

a log of your basil temp in the mornings. If they are low, you are still

hypo and you should see the temp come up as the dosage gets to the proper

level. This has to be done slow since your metabolism has to get kick

started again. Also keep records of your daily symptoms on the same chart.

These charts especially the basil can give clues to wether you may have an

underlying adrenal problem to the thyroid as many of us do. Together the

temp chart and symptom chart will provide the doctor the tools they need to

see how you are doing. Hope this helps and welcome to the group.

LaCretia

>From: Ruposky <ficheboy2001@...>

>Reply-hypothyroidism

>hypothyroidism

>Subject: Re: recently diagnosed

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>

>waldenworld <waldenworld@...> wrote:

>

>Hi,

>I just joined this group, since I've recently been diagnosed as

>having Hypo/Hashi. It's come as a huge surprise to me. Until a

>few months ago, I have always been very very active, with plenty

>of energy. I'm only 31 years old, and, thinking I had mono, went

>to the doctor. My TSH (or is it THS?) level was around 50. I'm

>now on Synthroid 75mcg (this is the first week). Aside from an

>occassional cold, I'm never sick. I almost never take any drug,

>including aspirin, ibuprofen, etc. Anyway, this is all kind of new to

>me, and I'm trying to get as much info as I can. I just read that

>soy products can be harmful, as are certain vegetables. I'm a

>vegetarian, so this news is rather depressing for me. I think tofu

>is one of my favorite foods.

>

>I guess mostly I'm wondering about when I will start to feel

>better. It's been really hard for me to adjust to doing very little.

>I'm a high school teacher, so all my energy is used just to make

>it through the day now. I come home and lie on the couch for

>hours. I feel very restless and helpless and am getting

>depressed because I can't do things I want to do anymore.

>

>Anyone got any advice? How did you make it through the first

>stage? Now that I have been diagnosed and have started

>Synthroid, it seems like I'm just waiting for the clouds to part.

>Does it happen?

>

>Sorry this is such a ramble. Thank you to anyone who reads this

>and/or responds.

>

>Heidi

>

August 17, 2005

YES realize that thyroid treatment is very poor. you will feel much better

on the right med and enough of it. your doc is not likelly to know this so

you must search for one who can help

http://www://geocities.com/thyroide

Gracia

> Any advise for a recently diagnosed crazy woman?

>

October 9, 2005

Hi,

Diagnosis of Cholesteatoma can be scary...it certainly "bummed me out" for quite a while. Finding this group and knowing that I wasn't the only person with this condition was of great help.

Some recommendations based on my personal experience:

- Find a doctor who specializes in C-toma

- Have it addressed as soon a possible

Recovery time varies with every individual and each surgery (if you have more than one). Most people seem to be back on their feet again in 2 to 3 weeks. Good luck with your surgery and rest assured that this condition can be treated successfully.

Regards,

Rich

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of cgljtyreeSent: Tuesday, September 20, 2005 12:25 PMcholesteatoma Subject: Recently Diagnosed

Hi there- I am a 26 year old female that has just been diagnosed with a right attic cholesteatoma by a doctor at the Michigan Ear Institute. This was a total surprise to me as I had a CT done three months ago in whichthe radiologist ruled out a C-toma. It all started about 2 months ago, when my ENT placed a a tube in my ear and the drainage still continued. I have to now get mey adenoids removed before my new doctor will treat my c-toma. I guess I am just very scared of the word cholesteatoma. Ia m gettign married this May, and I wondered if anyone could provide me with soem good news as to my recovery time. Thank you!

October 9, 2005

Just read your posted message. I was diagnosed in July. I had my

surgery on Sept. 28. It is less than 2 weeks, and aside from feeling

a little tired and minimal pain, my recovery is going much better

than I expected. I have two little ones so the " can't lift anything

(or anyone) heavy " part is tough. From reading this group, I know

that everyone recovers in different ways. My surgeon told me the

ctoma was worse than she thought and she had to replace a bone with a

prosthetic. I still have to see if my hearing will be restored, but

she is optomistic. I wish you luck and much happiness on your

upcoming marriage. Just know that you are not alone.

>

> Hi there-

>

> I am a 26 year old female that has just been diagnosed with a right

> attic cholesteatoma by a doctor at the Michigan Ear Institute. This

> was a total surprise to me as I had a CT done three months ago in

which

> the

> radiologist ruled out a C-toma.

>

> It all started about 2 months ago, when my ENT placed a a tube in

my

> ear and the drainage still continued. I have to now get mey

adenoids

> removed before my new doctor will treat my c-toma.

>

> I guess I am just very scared of the word cholesteatoma. Ia m

gettign

> married this May, and I wondered if anyone could provide me with

soem

> good news as to my recovery time.

>

> Thank you!

>

October 19, 2005

Thank you so much for your reply. I am actually scheduled for my 1st

surgery on Friday. My otologist said the c-toma was worse than he

expected after looking at the films from my CT scan.

I am nervous, but the words I recieve from everyone her are very

encouraging.

I will keep you posted!

> >

> > Hi there-

> >

> > I am a 26 year old female that has just been diagnosed with a

right

> > attic cholesteatoma by a doctor at the Michigan Ear Institute.

This

> > was a total surprise to me as I had a CT done three months ago in

> which

> > the

> > radiologist ruled out a C-toma.

> >

> > It all started about 2 months ago, when my ENT placed a a tube in

> my

> > ear and the drainage still continued. I have to now get mey

> adenoids

> > removed before my new doctor will treat my c-toma.

> >

> > I guess I am just very scared of the word cholesteatoma. Ia m

> gettign

> > married this May, and I wondered if anyone could provide me with

> soem

> > good news as to my recovery time.

> >

> > Thank you!

> >

>

April 4, 2007

Hi,

I had a pretty extensive ctoma in my right ear and had surgery about

eight weeks ago to remove it. Yes, the surgery to remove a ctoma is

pretty involved, but manageable. Once diagnosed, the best thing to do

is get the ctoma out as soon as possible. The longer its in, the more

damage it causes. Before surgery, I lost about 30% of my hearing.

Right now, I would guess I have about 50% loss; however, it is getting

better. As far as the olive oil treatment, I would not suggest that.

I remember that treatment being around as a kid and a doctor telling

my mother back then to NEVER put anything oily in ears. Get a good

ENT surgeon with a lot of experience removing ctomas and you'll

husband will be fine!

Good Luck!

Rich

>

> Hi there all... My husband was recently diagnosed w/this disease in

> both ears and he is very scared. He is a vet and we only have the VA

> hosp as a medical resource. He was told of the serious impact that

> the surgical procedure could have on his hearing and was told of the

> damage and risks associated with having the surgery. What he wasn't

> told, but I am learning through research on the net is that this

> could be a recurrent condition and that there is no garauntee that

> his hearing will be restored.

>

> The pain in his ear that is infected is unbearable. So bad that we

> made a trip to the emergency room at 3am to receieve antibiotics and

> pain medicine. He was rx vicodin for the pain, but that has only

> been of minimal help. He was given amoxicillan for the infection, but

> that is taking a very long time to move the infection out of the

> ear. Does anyone out there have any info or suggestions on what can

> be done for the pain or any antibiotics that seems to clear the

> infection sooner?

>

> Also, the home remedy of a cap of sweet oil or olive oil in the ear

> to assist in clearing the infection; can anyone give any info on this

> practice?

>

> Hubby is quite scared and ladies I know you know (if you're married

> or ever been in a caregiver to a boy or man)how men act when they are

> sick. He sometimes refuses to take the pain meds and choses to

> suffer through the pain as a result of how the vicodin makes him

> feel. In addition to all of this we suffer from severe seasonal

> allergies. He is taking claritin for that. We have checked all of

> the drug interactions. This is really taking its toll on our

> relationship and his interaction with our children. I am quite

> concerned..

>

> Can anyone offer any help?

>

April 4, 2007

Rich,

You have said many times that once it is diagnosed, it should be removed

quickly....my son's doctor doesn't seem to be that concerned....it was his

GP that caught it early, however I called his ENT surgeon (in a different

state now) and asked if we should move faster on it, he and his new ENT

surgeon do not seemed too concerned about moving fast. Yes, I brought up

that we needed to get cleared through the other specialist before he could

even get a CT, but that is done.

Would I be too overboard if when I saw his pediatrician on the 10th if I

asked for the CT ASAP and asked him to help move up the ENT appt? (it is

now sched on 4/30). I am noticing more " gunk " in that ear but he has always

been a waxing kid. Now that I know he has hearing loss of course I am

noticing different trends in his speech and hearning, but that could be just

be knowledge.....

Thanks

Stefanie

>From: " mcguyver98 " <mr@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: Recently Diagnosed

>Date: Wed, 04 Apr 2007 16:01:37 -0000

>

>Hi,

>

>I had a pretty extensive ctoma in my right ear and had surgery about

>eight weeks ago to remove it. Yes, the surgery to remove a ctoma is

>pretty involved, but manageable. Once diagnosed, the best thing to do

>is get the ctoma out as soon as possible. The longer its in, the more

>damage it causes. Before surgery, I lost about 30% of my hearing.

>Right now, I would guess I have about 50% loss; however, it is getting

>better. As far as the olive oil treatment, I would not suggest that.

> I remember that treatment being around as a kid and a doctor telling

>my mother back then to NEVER put anything oily in ears. Get a good

>ENT surgeon with a lot of experience removing ctomas and you'll

>husband will be fine!

>

>Good Luck!

>

>Rich

>

> >

> > Hi there all... My husband was recently diagnosed w/this disease in

> > both ears and he is very scared. He is a vet and we only have the VA

> > hosp as a medical resource. He was told of the serious impact that

> > the surgical procedure could have on his hearing and was told of the

> > damage and risks associated with having the surgery. What he wasn't

> > told, but I am learning through research on the net is that this

> > could be a recurrent condition and that there is no garauntee that

> > his hearing will be restored.

> >

> > The pain in his ear that is infected is unbearable. So bad that we

> > made a trip to the emergency room at 3am to receieve antibiotics and

> > pain medicine. He was rx vicodin for the pain, but that has only

> > been of minimal help. He was given amoxicillan for the infection, but

> > that is taking a very long time to move the infection out of the

> > ear. Does anyone out there have any info or suggestions on what can

> > be done for the pain or any antibiotics that seems to clear the

> > infection sooner?

> >

> > Also, the home remedy of a cap of sweet oil or olive oil in the ear

> > to assist in clearing the infection; can anyone give any info on this

> > practice?

> >

> > Hubby is quite scared and ladies I know you know (if you're married

> > or ever been in a caregiver to a boy or man)how men act when they are

> > sick. He sometimes refuses to take the pain meds and choses to

> > suffer through the pain as a result of how the vicodin makes him

> > feel. In addition to all of this we suffer from severe seasonal

> > allergies. He is taking claritin for that. We have checked all of

> > the drug interactions. This is really taking its toll on our

> > relationship and his interaction with our children. I am quite

> > concerned..

> >

> > Can anyone offer any help?

> >

>

_________________________________________________________________

MSN is giving away a trip to Vegas to see Elton . Enter to win today.

http://msnconcertcontest.com?icid-nceltontagline

April 4, 2007

I wish I could help with some magic pain cure...I do remember my husband once being told to try a warm heating pad wrapped in a towel at the base of the skull or on the ear....you could try that, but don't count on it actually working.....I too would avoid putting any kind of oil in his ears...it could exasperate the infection.....the only time I know of using warm mineral oil in the ear is to loosen hard wax and that's only on the advice of a doctor.....

Don't let the VA stonewall you. He's worked hard for his benefits and most of the red-tape is created by individuals with degrees in business management, but are not medical specialists. All they see is one form followed by another, and a patient as a number......Make them work for you.

Where do you live???? We live in Kansas and will either be going to KC or Texas for treatment.

Do you "clean" your home for allergens???? I'm working on mine to get mine as "free" as possible, not an easy task to say the least......

I do know how husbands react with pain.....my husbands been having a dilly of a time with his pain...He's been taking morphine and antibiotics and so far his headache has finally subsided....

It's true, as I'm sure you're seeing out here the risks are pretty major, but from past experience following my husbands first surgery and then the complete C-toma removal/reconstruction the lack of pain and dizziness far outweighed the loss in hearing....We were lucky though in that his doctors did tell him this could and most likely would reoccur....I just wish we'd known that taking a goofy little train ride up the side of a mountain would cause this much trouble by "readjusting" the prosthetics...had we known that we would have saved our money a drove to the top of Pikes Peak...

You just tell that husband vet of yours, you're the boss and he's got to follow orders....hopefully he'll smile and say Yes, Dear......

Good Luck, Keep posting....

Recently Diagnosed

Hi there all... My husband was recently diagnosed w/this disease in both ears and he is very scared. He is a vet and we only have the VA hosp as a medical resource. He was told of the serious impact that the surgical procedure could have on his hearing and was told of the damage and risks associated with having the surgery. What he wasn't told, but I am learning through research on the net is that this could be a recurrent condition and that there is no garauntee that his hearing will be restored. The pain in his ear that is infected is unbearable. So bad that we made a trip to the emergency room at 3am to receieve antibiotics and pain medicine. He was rx vicodin for the pain, but that has only been of minimal help. He was given amoxicillan for the infection, but that is taking a very long time to move the infection out of the ear. Does anyone out there have any info or suggestions on what can be done for the

pain or any antibiotics that seems to clear the infection sooner? Also, the home remedy of a cap of sweet oil or olive oil in the ear to assist in clearing the infection; can anyone give any info on this practice? Hubby is quite scared and ladies I know you know (if you're married or ever been in a caregiver to a boy or man)how men act when they are sick. He sometimes refuses to take the pain meds and choses to suffer through the pain as a result of how the vicodin makes him feel. In addition to all of this we suffer from severe seasonal allergies. He is taking claritin for that. We have checked all of the drug interactions. This is really taking its toll on our relationship and his interaction with our children. I am quite concerned..Can anyone offer any help?

TV dinner still cooling?Check out "Tonight's Picks" on TV.

April 4, 2007

,

Just like Kazzy you're missing the point. The topic concerned ear

aches in CHILDREN, not adults. I've never heard of a " child " who had

an ear ache associated with TMJ; however, I could name hundreds of

cases if not more associated with EAR INFECTIONS. If you want to

bring EVERY variable associated with ear aches okay, but that's not

what the topic was about! The topic was about the woman's child,

perhaps you need to revisit the original post to get facts straight

also. I didn't start this jihad, I merely stated an opinion about the

TOPIC; however, its funny how you jumped my opinion for stating facts

on the TOPIC at hand and supported the side that got off

topic.....hmmmm. Yes , you and Kazzy are absolutely right, ear

aches do occur from TMJ and all the other variables listed. I humbly

beg you and Kazzy forgive me for being so stupid.

Rich

>

> I wish I could help with some magic pain cure...I do remember my

husband once being told to try a warm heating pad wrapped in a towel

at the base of the skull or on the ear....you could try that, but

don't count on it actually working.....I too would avoid putting any

kind of oil in his ears...it could exasperate the infection.....the

only time I know of using warm mineral oil in the ear is to loosen

hard wax and that's only on the advice of a doctor.....

>

> Don't let the VA stonewall you. He's worked hard for his benefits

and most of the red-tape is created by individuals with degrees in

business management, but are not medical specialists. All they see is

one form followed by another, and a patient as a number......Make them

work for you.

> Where do you live???? We live in Kansas and will either be going to

KC or Texas for treatment.

>

> Do you " clean " your home for allergens???? I'm working on mine to

get mine as " free " as possible, not an easy task to say the least......

>

> I do know how husbands react with pain.....my husbands been having a

dilly of a time with his pain...He's been taking morphine and

antibiotics and so far his headache has finally subsided....

>

> It's true, as I'm sure you're seeing out here the risks are pretty

major, but from past experience following my husbands first surgery

and then the complete C-toma removal/reconstruction the lack of pain

and dizziness far outweighed the loss in hearing....We were lucky

though in that his doctors did tell him this could and most likely

would reoccur....I just wish we'd known that taking a goofy little

train ride up the side of a mountain would cause this much trouble by

" readjusting " the prosthetics...had we known that we would have saved

our money a drove to the top of Pikes Peak...

>

> You just tell that husband vet of yours, you're the boss and he's

got to follow orders....hopefully he'll smile and say Yes, Dear......

>

> Good Luck, Keep posting....

>

> Recently Diagnosed