Welcome

November 17, 1999

Hi SueB

Glad your back on line. But sorry to hear of your

problems. The new doctor doesn't really have the right

to take you off medication that your regular doctor

has prescribed. Don't accept what he has to say,

demand that he give you a script until your regular

doctor returns. Some doctors can't seem to comprehend

what pain can do to a human being until they have

experienced the suffering themselves. Take care and

try to stay positive.

AIH Melbourne

=====

November 25, 1999

Thank You for the welcome. I wish I joined Sooner. There are so many people

with med. Questions and lyme questions. I could have been asking the Dr. for

his Advice on these questions. Hopefully soon enough with all of our help we

will get him reinstated. I will keep you posted. I agree Datwyllers office is

a good spot. I was kind of kidding. but if enough people are willing IM in.

November 26, 1999

Hi ,

Welcome to Lyme-aid, with all this distress with Dr O's license loss, and

the holidays I neglected to say hello, I am thrilled you have joined our

list. Please keep us posted as to what we as a group can do to help him. I

am sorry I cannot make it to his office on Saturday for the volunteer effort

to reach his patients. I am sure you have plenty of help though from people

who live locally. I don't know if a protest in front of Ratwyllers house

would do the trick, I think his office is the better idea, maybe his

patients and fellow doctors would like to know what he is up to. If

something is set up to do something like this, please let me know.

Big hugs,

Marta NJ

>From: Shainajay12@...

>

>I would love more than anything to Protest infront of his house. let me

know

>if its possible lisa

>

April 9, 2000

Hi Crystal

Thanks for the welcome.

I spoke to my gastroenterologist

He told me that the steroids and imuran have caused this candida. I told him

I have had this for over a year - of course he said why didn't I tell him

earlier. I told him I didn't think the two were connected. He wants me to

get back in touch with my gynecologist and get stronger medication. In the

meanwhile, he is starting to stop imuran. I have now dropped from 150mg to

100mg. Are there any side effects with tapering off imuran?

Thanks

love

July 3, 2000

Dear : Welcome to the group. I've only been on this for about 1

month, but I've already learned so much and feel like I truly belong and

understand what others are going through.

First to your questions:

1. Never heard of Naprosyn causing scarring (my 8 year old daughter, Ashli,

was on Naprosyn for about 5 months and the main side effects were night mares

and finally stomach problems -- so we couldn't continue)

2. Chances of outgrowing? My understanding is that is usually depends on

what exact type of JRA the child is diagnosed with. 4 or less joints -- 5 or

more -- everywhere/systematic. The 4 or less is the best chance of

outgrowing. I have read that some children go into remission for years and

some forever. No way for the doctors to know for sure. Also want to warn

you that there is no easy way to diagnose the exact type of JRA. In my

daughters case we started with one knee -- now a year later it is both knees,

ankles, feet and sometimes elbows, wrists, knuckles. The doctor explained to

me that it takes time for the arthritis to " settle " in whatever joints and

all we could do is wait and treat the arthritis symptoms and disease with

medication and physical therapy.

Hope some of this helps and feel free to contact me anytime!!

God Bless,

Sandi A. (Ashli's mom)

August 5, 2000

: your letter about Tori was very special. I could feel your love and

concern for her in your words. My daughter, Ashli, was on naproxen for 6

months, but luckily no scaring. She did start having stomach problems and

nightmares, so doctor also switched her to Motrin. That and the plaquenil

over the last few weeks, seem to be truly helping. First time in a year

anything has truly helped. We know everyday the blessing we have in her

being able to walk down the stairs in the morning, even if it takes a little

while. Sorry we're not in Oregon, we're in Ohio, but hopefully others online

here will be closer to you. Welcome once again to the group!

God Bless,

Sandi A. (Ashli's mom)

September 1, 2000

Welcome ! Glad to know you've decided to introduce yourself

after lurking for a bit. Sorry to hear that your disease has

progressed. I'm sure you've read how many of us went a long time

(even years) before we got properly diagnosed.

MTX is a personal decision and not easy. Read through the archives

again with a search for MTX and/or methotrexate. There have been

some great discussions. Also more good info to be found at

www.arthritis.about.com

I waited several months after the rheumy suggested MTX. Finally I

realized that new joints were painful on a regular basis like falling

dominoes. Each new round of severe pain meant damage was occurring.

I tried an aggressive natural program but kept getting worse. I

finally agreed to the MTX as it became a quality of life issue. I do

my blood tests regularly and know that I will get off the drug

immediately if my numbers ever look bad. From what I have read it

seems that if you get off the drug as soon as any of the bloodwork

changes you are not likely to suffer any permanent damage.

Good luck to you and keep us posted. LaRita

Thought from LaRita

" If you believe everything you read, better not read "

Japanese Proverb

September 2, 2000

Thanks LaRita--one important question, did the MTX help? I'm assuming it

did. It's a quality of life thing for me too, I've got five young children

who did their mom--

I went ahead and took my first dose last night. We'll see.

September 3, 2000

- I was so terrified at my first dose of MTX - not to mention that the

package was sealed and shrink wrapped like it was toxic waste!!! I was sure

I'd barf up the last two weeks of everything I ate. Well, turns out after a

few weeks on the oral I did have stomach problems, but mainly diarreah (sp?)

which could have been from the prednisone, glucophage (for diabetes),

allapurinol (for kidney stones), or the anti-inflammatories. I take about 11

drugs and at least 9 of them cause stomach troubles. So I went to

injections. I had done allergy shots before and needles are no big deal to

me. Now I take my MTX every week like it's a tylenol. No problems or

worries - you will get used to it. But I do understand the fear of beginning

it. It will get better.

I hope it works for you. I seem to go in and out of flares, but before MTX,

I was sure I was headed for a wheelchair. Yesterday I went grocery shopping,

did some housecleaning, cooked beef stew and walked the dog - all using those

knees that couldn't hold me up before the MTX. It's no miracle, but that

along with the rest of my drugs let me live my (albeit modified) life.

Best to you,

September 4, 2000

, and others on Mtx;

As far as stomach discomfort, my Dr prescribed folic acid along with

mtx to make the digestion/absorption better.

Anyone else taking mtx -Do you also take folic acid too? I never had

problems in the two years I was taking them together.

in Japan

September 4, 2000

,

I have been on MTX since April of 1994. I didn't start taking Folic acid

until several years after. Two weeks ago I increased my dose from 15 to 20

mgs per week. The reason I started on the folic acid was that I began

experiencing mouth sores. On a whole, I've had a wonderful experience with

MTX. It does it's job, and makes my live somewhat livable and I don't have

any of the horrible side effects that some are domed to suffer. Becky, in

Nevada

[ ] Re: Welcome

, and others on Mtx;

As far as stomach discomfort, my Dr prescribed folic acid along with

mtx to make the digestion/absorption better.

Anyone else taking mtx -Do you also take folic acid too? I never had

problems in the two years I was taking them together.

in Japan

September 5, 2000

<As far as stomach discomfort, my Dr prescribed folic acid along with

mtx to make the digestion/absorption better. > From

Hi : My Dr put me on the Folic acid as soon as he started me on the

MTX. He explained that it's purpose was to prevent the mouth sores that

sometimes come with taking MTX. He said as far as the stomach discomfort, he

would prescribe something if I found I needed it as we went along. I have

had mainly diarrhea the next day or so and it has not been bad, however,

taking the Indocin & Prednisone also I believe I am feeling " floaty " (best

way I can describe it) at times when the whole mixture of drugs hits me. So

far I am just dealing with it...I see him tomorrow so we shall see what he

thinks...I am still seeing new symptoms (hands, toes) even with the MTX, but

I get it up to 15 mg tonight and I think he will keep it at that level for a

while to see how it goes. My biggest concern .. well, there are two....I

" feel " that there is pain in the liver area (has anyone else had this?)...I

am doing the weekly bloodwork so I don't know if anything is abnormal

there...will find that out tomorrow....and secondly, I am on 15mg daily of

Prednisone and I really, really want off of that stuff...My last attempt to

reduce it to 10 mg left me flat on my back in bed unable to stand...but maybe

now with the MTX started?? who knows...needless to say this is all an

experiment I guess. I feel good that my Rheumatologist & Dermatologist are

working together on me at least. Tomorrow I am going to ask him if there are

others like me in the Toledo/SE Michigan area...I feel that I am all alone

over here:( I try to tell people (family included) what this is and what

it's like and it just seems sooo.... " unimportant " ...I feel like they think

I'm a whiner or something... it's so hard to project what this is like....I

just thank God that I have a great understanding husband & daughter right

here filling in the " gaps " of our " daily living " caused by PA. My 26 year

old daughter calls & stops over every day to cook, etc. PA has brought us so

much closer together...so if there's a positive about alll this...it's THAT!

Only downer is son in college feels " helpless " because he's away and all he

can do is worry...

Sorry to ramble..

in Mornoe, MI

September 5, 2000

Hey ,

How was the trip? Did you make it okey? Your daughter is a gem and you better tell her so. As to the son in college...you are lucky there too, because most young people would rather be with their friends there and not even care about the parents.

Isn't today beautiful here in the state? I love fall...I think it is my favorite time of the year. Have a good week. Donna

saewen@... wrote:

-------------------------- eGroups Sponsor -------------------------~-~>GET A NEXTCARD VISA, in 30 seconds! Get ratesof 2.9% Intro or 9.9% Ongoing APR* and no annual fee!Apply NOW!>mtx'>1/7872/4/_/494167/_/968177489/-------------------------------------------------------------------- -_- >mtx to make the digestion/absorption better. > From Hi : My Dr put me on the Folic acid as soon as he started me on the MTX. He explained that it's purpose was to prevent the mouth sores that sometimes come with taking MTX. He said as far as the stomach discomfort, he would prescribe something if I found I needed it as we went along. I have had mainly diarrhea the next day or so and it has not been bad, however, taking the Indocin & Prednisone also I believe I am feeling " floaty " (best way I can describe it) at times when the whole mixture of drugs hits me. So far I am just dealing with it...I see him tomorrow so we shall see what he thinks...I am still seeing new symptoms (hands, toes) even with the MTX, but I get it up to 15 mg tonight and I think he will keep it at that level for a while to see how it goes. My biggest concern .. well, there are two....I " feel " that there is pain in the liver area (has anyone else had this?)...I am doing the weekly bloodwork so I don't know if anything is abnormal there...will find that out tomorrow....and secondly, I am on 15mg daily of Prednisone and I really, really want off of that stuff...My last attempt to reduce it to 10 mg left me flat on my back in bed unable to stand...but maybe now with the MTX started?? who knows...needless to say this is all an experiment I guess. I feel good that my Rheumatologist & Dermatologist are working together on me at least. Tomorrow I am going to ask him if there are others like me in the Toledo/SE Michigan area...I feel that I am all alone over here:( I try to tell people (family included) what this is and what it's like and it just seems sooo.... " unimportant " ...I feel like they think I'm a whiner or something... it's so hard to project what this is like....I just thank God that I have a great understanding husband & daughter right here filling in the " gaps " of our " daily living " caused by PA. My 26 year old daughter calls & stops over every day to cook, etc. PA has brought us so much closer together...so if there's a positive about alll this...it's THAT! Only downer is son in college feels " helpless " because he's away and all he can do is worry...Sorry to ramble.. in Mornoe, MIPlease visit our new web page at:http://www.wpunj.edu/icip/paWe are currently discussing new chat times. moderates a chat on arthritis atwww.about.com on Thursday evenings, so check thatout in the meantime! E mail at RA@... for details.

March 10, 2001

Hi ,

Thank you : ) Though I may have been the one who initially started this group,

it's the feedback and contributions of everyone that keeps it up and running. I

think we've got a great group of people here, sharing a common bond and helping

one another.

About all the medical articles .... you know that old saying: sometimes when it

rains, it pours! Especially during the annual American College of Rheumatology

Conference. That's when everyone in the field shares the research they've been

working on .... and sometimes the amount of info can be overwhelming. I think

it's important for us to have access to research and studies related to

Arthritis/JRA, though. Good to keep well informed and up to date, so we can

communicate with understanding with our children's health care providers. Since

automatically archives the posts, it's also a great way to add to our

information resources. If it ever gets to be too much, just use your delete key!

The posts will still be accessible through the archives so you don't have to

worry about missing important stuff that you may want or need to read at a later

time. Just type in a key word in the search feature (available at the main JRA

group site, under Messages) and you should be able to find what you need. I too

print out many JRA articles. Some to keep for my own reference and others to

share with teachers/others who are concerned and want to know more about JRA.

Often times these reports are more detailed than those available from the

Arthritis Foundation. Which, of course, is a fantastic source of info and

support and one that all of us should be connected with.

Take Care,

Georgina

Deedee, One more thing, Georgina founded and runs the list. She is a

godsend to all of us parents. She sends thru many medical articles as she

comes across them. At first it was too much, so I would print them up, and

read them as I had time. I started a file on them. You will soon know more

than you had ever dreamed you could know on JRA.

March 20, 2001

Hi cheryl!

Thanks for the reply!!! It is so great knowing that I am not alone, and yes I am in shock. I am absolutely tired all the time, I used to just attributed it to studying too hard. I am noticing other side effects that I have, that never would have made me think that something was the matter with me prior to the diagnosis such as dry-blurry eyes. I am going to my eye doctor tomorrow because the blurriness is getting worse. I also have thyroid disease, (hypoactive) so I had to call my Endocrine Doctor to make yet another appointment. I am just trying to keep my chin up and stay positive.

Hopefully we caught this early enough! Again thank you for the reply, my prayers are with you and the rest of my "New Friends" in this support group!

Sincerely,

Pam

August 29, 2001

I wish 's fever would go away. It's almost a year now and she still

gets them. I don't even take her temp anymore and can just feel it and so

can she.

Pat

September 28, 2001

Greetings from London! It's 23 degrees and not raining so we're all feeling a little disorientated over here!

I'm a newbie to this site and I've been reading with interest and I thought that it was about time it's about time I made contact and told my 'Cholesteotoma Tale'.

I should briefly explain our health system in England first. We have a system called the National Health Service by which every individual pays a tax out of their earnings which goes towards various public services, one of which is the National Health Service. The principle is that everyone has access to whatever healthcare they may need without having to pay out ridiculous fees. Unfortunately, since it's inception in the '50s the system has become overloaded, underfunded and waiting lists for operations can stretch to years. It's become something of a political hot potato. Some people choose to pay for their healthcare (we call this 'going private') in the belief that they receive better attention in more comfortable conditions. This is probably true but you have to be well off to be able to do this.

So... about six years ago I noticed that my right ear was leaking a foul smelling substance, I kept hearing clicking noises and I felt like there was something in my ear. I have a long history of middle ear infections and whilst working on fishing trawlers in Greece (I was working my way around the world at the time) I suffered a particularly bad infection that I believe was the start of this whole affair.

I went to a GP ( General Practitioner, a local free doctor with whom I am registered on the National Health Service) who told me that I had a middle ear infection. I took his word for it and dutifully finished the course of antibiotics...to no avail. I went back after about six months and demanded to see an ENT specialist. He took one look in my right ear and told me that I needed an operation immediately to remove a 'tumour-like growth' from my ear. This alarmed me considerably as you can imagine so I went to the library to find out what the hell it was. I left the library even more worried!

I had the operation, but they woke me up in the middle of the op to tell me that the Cholesteotoma was a lot bigger than expected and that they felt it only fair to warn me of all the dangers first (risk of cutting the facial nerve etc etc). So...I had a second operation which meant that the entire hearing mechanism was removed including a lot of the mastoid bone. I woke up, they told me that they thought they had got rid of it, but only time would tell.

They hadn't. I eventually needed a third op to get rid of the last vestiges that had started to grow again. Also, although I had made great efforts to keep my ear dry, the inside lining of my ear was refusing to turn into dry skin which is an important part of the healing process. After a long haul of minor infections, fungal growths etc the lining finally turned into dry skin and I was told that I could have showers again and go swimming. I don't ever let my ear get wet these days though, because i'm paranoid and really don't want to make any trouble for myself.

The bottom line is that I am well and healthy now although permanently stone deaf in my right ear. I saw a lot of people in hospital who had much worse diseases or complaints than mine. So ultimately I think of my story as one of hope although it took six years to get to this point.

Regards to you all,

STU.

_____________________________________________________________________

This message has been checked for all known viruses by Sourcetec International delivered through the MessageLabs Virus Scanning Service. For further information visit http://www.sourcetec.net or alternatively mail info@....

September 28, 2001

Hi Stuart,

Twenty-three degrees seem extremely cold for London.

All of my relatives from my mothers side are from

London or the London area. I visited there once when

I was a lot younger. About the only thing I remember

is that I got the flu the day we had to leave. Haha.

Glad you decided to share your story. You may have

answered this but how long have you been c-toma free?

Did you ever get c-toma in your other ear? My husband

discovered his from the foul smell. He always said it

smelled like death. He had a large tumor and they

thought they got it all, although it had already

eroded the ear bones and was working it's way to the

brain. The doctor did a second look and the c-toma

was in his mastoid so they did a canal-wall-down

radical mastoidectomy. He can hear with a hearing

aid. Just last month he had his first c-toma surgery

on his right ear (it was just done on 8/29). So far

everything is going well. His next post op is October

19 and hopefully still good news.

Once again, welcome to our group and thank you for

sharing your story!

Michele

--- " Knox, Stuart " <stu@...> wrote:

> Greetings from London! It's 23 degrees and not

> raining so we're all feeling

> a little disorientated over here!

>

> I'm a newbie to this site and I've been reading with

> interest and I thought

> that it was about time it's about time I made

> contact and told my

> 'Cholesteotoma Tale'.

>

> I should briefly explain our health system in

> England first. We have a

> system called the National Health Service by which

> every individual pays a

> tax out of their earnings which goes towards various

> public services, one of

> which is the National Health Service. The principle

> is that everyone has

> access to whatever healthcare they may need without

> having to pay out

> ridiculous fees. Unfortunately, since it's inception

> in the '50s the system

> has become overloaded, underfunded and waiting lists

> for operations can

> stretch to years. It's become something of a

> political hot potato. Some

> people choose to pay for their healthcare (we call

> this 'going private') in

> the belief that they receive better attention in

> more comfortable

> conditions. This is probably true but you have to be

> well off to be able to

> do this.

>

> So... about six years ago I noticed that my right

> ear was leaking a foul

> smelling substance, I kept hearing clicking noises

> and I felt like there was

> something in my ear. I have a long history of middle

> ear infections and

> whilst working on fishing trawlers in Greece (I was

> working my way around

> the world at the time) I suffered a particularly bad

> infection that I

> believe was the start of this whole affair.

>

> I went to a GP ( General Practitioner, a local free

> doctor with whom I am

> registered on the National Health Service) who told

> me that I had a middle

> ear infection. I took his word for it and dutifully

> finished the course of

> antibiotics...to no avail. I went back after about

> six months and demanded

> to see an ENT specialist. He took one look in my

> right ear and told me that

> I needed an operation immediately to remove a

> 'tumour-like growth' from my

> ear. This alarmed me considerably as you can imagine

> so I went to the

> library to find out what the hell it was. I left the

> library even more

> worried!

>

> I had the operation, but they woke me up in the

> middle of the op to tell me

> that the Cholesteotoma was a lot bigger than

> expected and that they felt it

> only fair to warn me of all the dangers first (risk

> of cutting the facial

> nerve etc etc). So...I had a second operation which

> meant that the entire

> hearing mechanism was removed including a lot of the

> mastoid bone. I woke

> up, they told me that they thought they had got rid

> of it, but only time

> would tell.

>

> They hadn't. I eventually needed a third op to get

> rid of the last vestiges

> that had started to grow again. Also, although I had

> made great efforts to

> keep my ear dry, the inside lining of my ear was

> refusing to turn into dry

> skin which is an important part of the healing

> process. After a long haul of

> minor infections, fungal growths etc the lining

> finally turned into dry skin

> and I was told that I could have showers again and

> go swimming. I don't ever

> let my ear get wet these days though, because i'm

> paranoid and really don't

> want to make any trouble for myself.

>

> The bottom line is that I am well and healthy now

> although permanently stone

> deaf in my right ear. I saw a lot of people in

> hospital who had much worse

> diseases or complaints than mine. So ultimately I

> think of my story as one

> of hope although it took six years to get to this

> point.

>

> Regards to you all,

> STU.

>

_____________________________________________________________________

> This message has been checked for all known viruses

> by Sourcetec International delivered through the

> MessageLabs Virus Scanning Service. For further

> information visit http://www.sourcetec.net or

> alternatively mail info@....

=====

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

__________________________________________________

September 28, 2001

Stuart,

Well your healthcare system is still much better than ours. Ours is always in chaos and although we have medicaid and medicare, they are reserved for elderly and welfare.

Your condition is consistent with most of the testimonies on the webpage.

In most cases a "reconstruction" of the inner ear bones comes after 6 months to a year after having a dry ear.

I wouldn't shut the door on the possibility of this for you. Even for the most radical surgeries.

You didnt even have part of your ear canal wall removed.

I have a prosthetic implanted on my eardrum that resonates against some sound to the stapes.

Furthermore, normally, cholesteatomas do not affect the ear from hearing even w/o hearing bones.

A hearing test where they put that headset behind your ear against your mastoid bone, shows that your hearing

mechanism is still healthy, just the mechanism to bring it there may be missing. Even so, without any of my

hearing bones, i.e. hammer/anvil, I could still enjoy stereo sound, just had to turn the balance way to the right.

Reconstruction brought it back up to about 75%.

I would definately check it out, and even schedule it if your healthcare covers it. It sure will save them from filing disability, if you have that in England.

Oh yeah, after surgery, keep the ear dry, I wouldnt risk it either.

Keep the faith Stew.

Your friend in America,

Cholesteatoma Website

www.cholesteatoma.org

RE: Welcome