New Member

Posted February 9, 2005 · February 9, 2005

HI EMILY- IVE BEEN READING THIS WEBSITE FOR ABOUT A MONTH AND WE HAVE A 4

YEAR OLD WE ARE HAVING TESTED FOR APRAXIA, THE LATE TALKER BOOK AND THIS

WEBSIGHT

HAVE HELPED US ENORMOUSLY- CHARLOTTE HENRY

Posted February 19, 2005 · February 19, 2005

Hello Dana. I live in Warren County, NJ, and our son, will be 3 in

June. We were concerned with 's speech delay, but our family and worst

of all, pediatrician kept advising us to wait until he got a little older to

really start worrying. Needless to say, I ran into a woman in Hackettstown

Hospital who was bringing her 4 year old son there for outpatient speech

therapy. She also had a daughter who was a little younger than . That

woman told me about the Early Intervention Program, and that she wished she

never waited to start evaluating her son, because now he's in therapy and it's

extremely expensive.

Anyway, started working with a wonderful speech therapist, through Early

Intervention, at the end of October. When he started with his ST, he said about

10 words. He will be " aging out " of the program in June and we had the

transition meeting with our district's CST on February 10th. He has about 30 -

50 words (most of them sounding the same), but other than his speech, his other

skills are fine.

Now before our transition meeting, we were warned that our district is very

difficult but I was never more floored with their immediate decision! The CST

psychologist was very arrogant and blantantly said that she felt that she spoke

for the rest of the CST that they should not even do their evaluations for

because he wouldn't qualify, because he needed " two disabilities " and he

only had one. My ST and service coordinator insisted they do the evaluations,

but I just know that they're going to turn him down for the disabled preschool

program. I questioned ...how can he learn if he cannot communicate? I didn't

get an answer.

My ST is leaning towards Apraxia and has been since before Christmas, but she

doesn't really want to jump the gun. She said that if got a diagnosis

of Apraxia, they'd have to take him into the program. He also had some hearing

loss due to fluid in his ears, so we're having him re-evaluated by an ENT on

2/23 and as horrible as it is, I'm hoping he still has a slight hearing loss,

just so he'd get the help he needs. Know what I mean?

He's a great little boy, a little aggressive and he too, gets extremely

frustrated because we don't understand him most of the time. I always look to

my husband for translation and 7 times out of 10, we get it wrong. Most of his

words sound the same.

You mentioned Dr. Laveman. Where is he located? I'm wondering if I should just

bring him to a neurologist myself, especially since I don't need a referral from

my primary doctor.

This is my first time writing anyone on this site, but I've been reading

everyone's posts and it's been helpful to know that isn't alone.

Any additional feedback is welcomed.

Thanks!

Priscilla

[ ] new member

Hello I am from County NJ, and I have a son who just turned

three on Feb. 10th.Our son is diagnosed with moderate/severe verbal

dyspraxia. He was in early intervention and private speech therapist

since 2 years 7months old, and now he is in a pre-school disabled

program 5x a week from 8:30am to 11:15am. He gets speech therapy 3x

a week inschool with another child for 30minutes. I do not feel that

it is enough or if he should be having speech alone. The therapist

at his school said they pair up the students so they learn to

communicate with each other, but in my son's case he does communicate

but not much makes sense and he gets frustrated when we don't

understand him. He has about 5o-60 intelligible words and he uses

the PEC system and sign language, he uses them when he gets really

frustrated because we do not understand him. He does have a lot of

tantrums and has behavior issues because people do not understand him

example ( hitting, punching, excessive crying if he's frustrated) I

was wondering if anyone has any proven therapies that work, info on

EFA's and Names of good Developmental Pediatricians. We do have an

appointment in May with Dr. Larry Laveman, If anyone has seen him

please let me know. I appreciate reading all the posts about your

children I pray that they will all turn out to be wonderful public

speakers one day. Thanks so much, Dana

Posted February 20, 2005 · February 20, 2005

Pricilla and Dana. You are both very fortunate to be in NJ -because

you are surrounded by other families just like you -and a huge

amount of ethical, knowledgeable and awesome professionals.

Just a few quotes of yours Pricialla.

" Anyway, started working with a wonderful speech therapist,

through Early Intervention "

" Now before our transition meeting, we were warned that our district

is very difficult but I was never more floored with their immediate

decision! The CST psychologist was very arrogant and blatantly said

that she felt that she spoke for the rest of the CST that they

should not even do their evaluations for because he wouldn't

qualify, because he needed " two disabilities " and he only had one. "

" My ST is leaning towards Apraxia and has been since before

Christmas, but she doesn't really want to jump the gun. She said

that if got a diagnosis of Apraxia, they'd have to take him

into the program. "

How does that song go again? " One of these things just doesn't

belong here -one of these things just isn't the same... " (Actually -

more than one!)

First of all (where do I start?!)

1. Say " that's interesting. Can you put that in writing for me? "

for statements from the school professional

like " ...wouldn't qualify, because he needed two

disabilities and he only had one. " And, from now on tape all

meetings and document them as a follow up in writing.

" Dr. Mrs. " Blatantly Arrogant " , (your words -but they work)

My child's EI therapist suspects my son ____ who will be turning 3

on ___ has apraxia. I was under the impression that with his

documented severe ____% delay in speech, that he will qualify for

our town's Federally funded Early Intervention preschool program.

As the school psychologist when you say that my verbally impaired

child won't qualify because he needed " two disabilities " that struck

me as odd because my friend has a child who is ___ (hearing

impaired, visually impaired, etc.) , just " one " disability, who is

receiving appropriate services funded by our town's Federally funded

preschool program. So why again won't my son's " one " disability

qualify again? "

And tell her you are thinking of moving to Ghana

" There are various spectra of disabilities which may lack attention from our

educational domain. For example; children suffering from dyslexic, dyspraxia,

attention deficit, autistism, behavioural problems and others which may be

caused by traumatic births, are not picked up at an earlier stage to get the

treatment needed for them to reach their potential in life. "

http://www.ghanaweb.com/GhanaHomePage/NewsArchive/artikel.php?ID=75690

Or don't say anything and just call me at 772 335 5135. I have

someone who's job is looking for schools doing things like this that

are against an adult's or child's civil rights for you to report

this to. Let's see how " blatantly arrogant " this person is then.

We go through enough in having a child with special needs -how dare

she act that way anyway to parents -who gave her the right (or job?)

2. And I'm not letting your child's SLP off the hook here either!

Nice means nothing when it comes to people helping your child -and

you just proved it. What does " My ST is leaning towards Apraxia and

has been since before Christmas, but she doesn't really want to jump

the gun. She said that if got a diagnosis of Apraxia, they'd

have to take him into the program " mean?! Did you ask her to

remind you of the downside? Ten years from now your son will be

your son and you may never see that EI SLP again (unlike me who

really did have an awesome EI therapist Zimet who used to

also be out of NJ but is now with EI in Georgia -and I'm sure can

help you too. is still and I hope always part of our life.)

And if apraxia is suspected you should see a neuroMD (developmental

pediatrician or pediatric neurologist) Dr. Laveman diagnosed

Stacey's son

http://www.cherab.org/information/familiesrelate/staci.html and he

used to do outreach online here. Like most professionals however

that post here -they get flooded with 30 50 emails a day and it's

hard to keep up. (some ask me to post for them -some answer

privately -and some do post here direct -thank you)

Another good neuroMDs in NJ is Dr. Cargan

http://www.drcargan.yourmd.com/ who I've heard great things about,

and Dr. Ming

http://www.umdnj.edu/njmsweb/neuroscience/faculty_bio/old%20bios/Xueming.htm

And in the " NJ area " -Dr. Agin of course! (my child's neuroMD)

And there are many great SLPs in NJ -some post here to help (thank you)

The rest can be answered in this archive from a new member post for both you and

Dana

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

http://www.cherab.org/information/speechlanguage/oralapraxia.html

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

For all your other questions including what type of testing -just

read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

It!') At Amazon.com you can even start today and read sample pages

of the book online!

" The first book to show parents how to tell whether a child has a

speech

delay -or a more serious speech disorder

Every parent eagerly awaits the day his or her child will speak for

the fist

time. For millions of mothers and fathers, however, anticipation

turns to

anxiety when those initial, all-important words are a long time

coming. Many

worried parents are reassured that their child is " just a late

talker, " but

unfortunately, that is not always the case. Co-author

Posted February 20, 2005 · February 20, 2005

Hello Priscilla,

I thank you for writing back to me about your son . It is a

shame that your school district is so tough to give the help that

your son needs. Jefferson Township said that since my son

was in early intervention that they usually take kids from EI into

the preschool-disabled program. I would go to a private

developmental pediatrician to get a formal evaluation so that you can

approach the CST with documents showing what's wrong. My concern as

well was how is he suppose to do well in a regular preschool if no

one can understand him, and like your son, my son also gets very

aggressive if we don't understand him, and I feel that will cause

more problems in the long run. My son has an appointment with Dr.

Laveman on May 4th. I just called the office this past Friday, and

that's the earliest they have. He has three offices but the one

closest to us is in Sparta NJ, we live in Lake Hopatcong so his

office is only 15 min. from our home. I would make an appointment

with him just to have extra info. on your son for CST meetings. If

you need his number or his other offices, either look on the Cherab

website or email me back. I hope all works out for you and your son,

it's so frustrating as a parent watching them struggle. By the way

how far is Warren County from Lake Hopatcong? Talk Soon, Thanks,

Dana Millar

>

> To:

<mailto: @gr

oups.com>

> Sent: Friday, February 18, 2005 1:26 PM

> Subject: [ ] new member

>

> Hello I am from County NJ, and I have a son who just

turned

> three on Feb. 10th.Our son is diagnosed with moderate/severe

verbal

> dyspraxia. He was in early intervention and private speech

therapist

> since 2 years 7months old, and now he is in a pre-school disabled

> program 5x a week from 8:30am to 11:15am. He gets speech therapy

3x

> a week inschool with another child for 30minutes. I do not feel

that

> it is enough or if he should be having speech alone. The

therapist

> at his school said they pair up the students so they learn to

> communicate with each other, but in my son's case he does

communicate

> but not much makes sense and he gets frustrated when we don't

> understand him. He has about 5o-60 intelligible words and he

uses

> the PEC system and sign language, he uses them when he gets

really

> frustrated because we do not understand him. He does have a lot

of

> tantrums and has behavior issues because people do not understand

him

> example ( hitting, punching, excessive crying if he's

frustrated) I

> was wondering if anyone has any proven therapies that work, info

on

> EFA's and Names of good Developmental Pediatricians. We do have

an

> appointment in May with Dr. Larry Laveman, If anyone has seen

him

> please let me know. I appreciate reading all the posts about

your

> children I pray that they will all turn out to be wonderful

public

> speakers one day. Thanks so much, Dana

>

Posted March 5, 2005 · March 5, 2005

In a message dated 3/5/2005 3:29:36 PM Eastern Standard Time,

docsmith@... writes:

This shows you

that even physicians get PA and do not know what to do. Good luck to

all of you in the battle against this condition. You are not alone.

I really feel for you. I had to quit nursing school about 3 years ago and

was only a few credits away when this happened. I could not limp around the

hospital when in clinical anymore. I am 51 and have been in the medical

profession since I was 21. For years I was a medical assistant in an internal

medicine practice. I diagnosed myself with PA about 15 years ago when one

rheumatogist said it was OA. I did not agree with him however I only had mild

pains at that time and accepted it. Only 3 years ago when I deteriorated is

when I was diagnosed. I have tried double and single doses of HUmira and

Enbrel along with all the NSAIDS and when my foot was the size of a bologna a

few

weeks ago my present rheumy said he did not know what else to do. I walked

out of his office and will not see him again. Then I went to a doc who

believes in a more natural approach. I have been eliminating night shades,

preserved foods, salt and carbs and he also gave me drops sublingually to

desensitize myself from yeast and 5 bacteria's. Next time he will test foods

and

viruses. This was less then 3 weeks ago and the pain level has gone from 10

to

about 3 or 4. I wish you luck. I also need to find another rheumy. Lord

knows I tried the meds so now I am going to stick to a more natural approach.

Janet

Posted March 5, 2005 · March 5, 2005

One thing you mention is lack of regular sleep.

>

> I have been a new member for a week or two. I am discouraged about

> the lack of success in the treatment of PA. This is especially true

> since I am a physician. (I am a 58 year old male)

> I made the diagnosis of PA on myself about 5 years ago. It started

> with psoriasis then slowly my joints of my hands, low back, and knees

> became very painful. I am on my fourth rhemnatologist. The first one

> moved. The second one was at the University. I was seen by med

> students and never got to see the doc myself. I knew more about PA

> myself. The third was pretty good but didn't take my insurance. Yes,

> even " rich " doctors worry about insurance. The fourth and last

> rheumatologist is great. We are getting nowhere, however. To date I

> am on MTX 25mg a week. It took the psoriasis away but has not helped

> my joints. I have had no side effects from MTX. I have tried Arava and

> later cyclosporin with no help. I have been on remicaid, and enbrel

> with no help with the fatigue and joint pain. I have taken my second

> Humira injection and so far no help. I also take NSAIDs. The only

> thing I have found that helps is a 7 to 10 course of prednisone. That

> really helps, but as you all know, I cannot keep doing that forever.

> My biggest problem is fatigue and joint pain. I am an Ob/Gyn doctor

> so I am up at nights and the fatigue is killing me. Also I do a lot

> of surgery and my hands are so painful I worry about my skills. I

> have thought of applying for disability but I love my profession and

> do not want to quit. If I sound discouraged, I am. This shows you

> that even physicians get PA and do not know what to do. Good luck to

> all of you in the battle against this condition. You are not alone.

Posted March 5, 2005 · March 5, 2005

Hi Janet Would you be willing to keep a journal of the specific dietary

changes you have made and I am also quite interested in the sublingual

preperation

you are using to desensitize for yeast and 5 bacteria. Do you know what

bacteria are suspect? I would like to know everything about this Doctor's

approach

to your case because it sounds like he/she may be testing for things that I

have been thinking about. Orin

In a message dated 3/5/05 9:19:23 PM Central Standard Time, fam24@...

writes:

I went to a doc who

believes in a more natural approach. I have been eliminating night shades,

preserved foods, salt and carbs and he also gave me drops sublingually to

desensitize myself from yeast and 5 bacteria's. Next time he will test foods

and

viruses. This was less then 3 weeks ago and the pain level has gone from

10 to

about 3 or 4. I wish you luck. I also need to find another rheumy. Lord

knows I tried the meds so now I am going to stick to a more natural approach.

Janet

Posted March 5, 2005 · March 5, 2005

Dear Dean, I could have written your email, except for the doctor

profession. My husband and I own an insurance company and we used to work

side by side. I got hit with PA about 5 years ago, but I think it might

have even been earlier. It hit me first in my jaw and by the time, we had a

diagnosis my right condlye was totally degraded. My jaw is ankylosing

together and yet even with the chronic facial spasms it’s not my worst place

for pain these days. Like you, I went through my share of doctors. I know

you probably hear a lot about bad doctors, and I’ve seen a lot of doctors in

my life due to other health problems. I do think though that

rheumatologists, as a whole are really hard to deal with. I find them set

in their ways, and very judgmental. If you don’t fit into their description

of what a PA patient should look like, then most of them won’t diagnosis

you. (I actually had one doctor tell me I couldn’t have RA because I didn’t

have blonde hair. My hair is brown, but that one was news to me…lol.) I

finally went to a teaching University and found a doctor who diagnosed me

with PA, RA, Osteoarthritis, Osteoporosis, Facets disease, spondylitis,

lumbar disc disease, fibromyalgia, and stenosis. Before I saw him, I was

only told I had asthma and fibromyalgia. So my joints aren’t in very good

shape right now. I will turn 50 in June.

Like you, very few medications have helped me. I tried all the new ones and

the old ones on the market. Some made me seriously ill, like Humira, which

left me with a chest infection that lasted for almost 5 months. I ended up

on 60mg of predinsone and still am on 12mg everyday. I’ve had to take it

now for over 3 years and I’ve hated every minute of it. I know what it can

do to me, from watching my parents taking it every day with emphysema. Yet

the once I get below 10mg, I usually end up unable to walk on my feet within

a week of lowering the dose. So I am dealing with Cushing’s as well now.

I personally would do what ever I could to keep my job and my career going

if it’s that important to you. Retiring early always sounds great but the

problem is if you are like me, you don’t feel good enough to do anything

anyway. If you could work part-time that might work out if you health doesn

’t improve. You are at a point that a lot of us have to face, life changing

decisions…and it isn’t fun and can be very life shattering.

One book I would suggest you read is called “The Anatomy of Hope by Dr.

Groopman. He is a cancer specialist and at first I thought the book would

be depressing, but I’ve read it twice now and it really has inspired me to

hold on to hope. He is a wonderful person, if he is half the person he

writes about in the book, and it might inspire you as much as it has me.

* All I can really say is welcome to our little piece of the world.

The people here are amazing. They are bright, creative and caring beyond

words. I’ve learned more from this group than my doctors have ever had the

time to tell me about my disease. Not to mention the companionship and

friendship I’ve made in the past few years, when otherwise, I’m home most of

the day alone. (Of course, my two little dogs keep me company and brighten

my day as well.) I hope you are one of the lucky ones who go into

remission and don’t have many problems in the future. We are here for you

no matter what your future holds. Take care and let us know how you are

doing. Fran

*

* PS I’ve had more luck with Pain management for treatment, than

any other doctor so far.

I have been a new member for a week or two. I am discouraged about

the lack of success in the treatment of PA. This is especially true

since I am a physician. (I am a 58 year old male)

I made the diagnosis of PA on myself about 5 years ago. It started

with psoriasis then slowly my joints of my hands, low back, and knees

became very painful. I am on my fourth rhemnatologist. The first one

moved. The second one was at the University. I was seen by med

students and never got to see the doc myself. I knew more about PA

myself. The third was pretty good but didn't take my insurance. Yes,

even " rich " doctors worry about insurance. The fourth and last

rheumatologist is great. We are getting nowhere, however. To date I

am on MTX 25mg a week. It took the psoriasis away but has not helped

my joints. I have had no side effects from MTX. I have tried Arava and

later cyclosporin with no help. I have been on remicaid, and enbrel

with no help with the fatigue and joint pain. I have taken my second

Humira injection and so far no help. I also take NSAIDs. The only

thing I have found that helps is a 7 to 10 course of prednisone. That

really helps, but as you all know, I cannot keep doing that forever.

My biggest problem is fatigue and joint pain. I am an Ob/Gyn doctor

so I am up at nights and the fatigue is killing me. Also I do a lot

of surgery and my hands are so painful I worry about my skills. I

have thought of applying for disability but I love my profession and

do not want to quit. If I sound discouraged, I am. This shows you

that even physicians get PA and do not know what to do. Good luck to

all of you in the battle against this condition. You are not alone.

..

Posted March 5, 2005 · March 5, 2005

Hi Dean(docsmith),

welcome to our group. yes...the pa can sure be discouraging. Hope

humira will be at least a partial answer for you. I know several

people here are helped by it. Are there consulting options available

for you if you choose not to apply for a whole disability? I went

out of work slowly...worked part time, then changed the part time job

and finally could not work at all although I am still hoping to

return to part time work.

best,

marti

Posted March 6, 2005 · March 6, 2005

In a message dated 3/6/2005 8:12:00 AM Eastern Standard Time, orinok@...

writes:

I would like to know everything about this Doctor's approach

to your case because it sounds like he/she may be testing for things that I

have been thinking about. Orin

Just got your messsage Orin and yes, I will definitely do that for you and

it would be good for myself as well. I have downstairs a list of 5 types of

yeast and 5 bacterias which I will post as soon as I go down and come up here

again. The doc called the bacterias, arthritis bacteria which if you have a

high numbers can cause joint pain. I also tested the highest to candida

albicans which the diet will help eliminate. I bought a store made barbqued

chicken yesterday for dinner and noticed a little more achey today. Then I

read

the ingredients and saw preservatives. I have to stay away from these. He

said the carbs really feed into this yeast thing also. I never thought I

would follow a diet for arthritis and I am off all meds except some Naprosyn a

few days a week. I still ache all over but it is not the intense pain I was

experiencing. I will send more later.

Janet

Posted March 6, 2005 · March 6, 2005

Thanks for the reply. I am hoping I can continuing delivering babies and

surgery, but if Humira doesn't help I've tried about everything. I may have to

quit Ob and just do an office practice of Gyn. It might help the PA if I am not

so fatigued. I still would have to do surgery and that will be difficult if my

hands get any worse. What a delema.

[ ] Re: New Member

Hi Dean(docsmith),

welcome to our group. yes...the pa can sure be discouraging. Hope

humira will be at least a partial answer for you. I know several

people here are helped by it. Are there consulting options available

for you if you choose not to apply for a whole disability? I went

out of work slowly...worked part time, then changed the part time job

and finally could not work at all although I am still hoping to

return to part time work.

best,

marti

Posted March 6, 2005 · March 6, 2005

Thanks for your reply. We do have a lot in common. This group has been helpful

to me. Misery loves company. Is there anybody out there that has encouraging

news?

RE: [ ] New Member

Dear Dean, I could have written your email, except for the doctor

profession. My husband and I own an insurance company and we used to work

side by side. I got hit with PA about 5 years ago, but I think it might

have even been earlier. It hit me first in my jaw and by the time, we had a

diagnosis my right condlye was totally degraded. My jaw is ankylosing

together and yet even with the chronic facial spasms it's not my worst place

for pain these days. Like you, I went through my share of doctors. I know

you probably hear a lot about bad doctors, and I've seen a lot of doctors in

my life due to other health problems. I do think though that

rheumatologists, as a whole are really hard to deal with. I find them set

in their ways, and very judgmental. If you don't fit into their description

of what a PA patient should look like, then most of them won't diagnosis

you. (I actually had one doctor tell me I couldn't have RA because I didn't

have blonde hair. My hair is brown, but that one was news to me.lol.) I

finally went to a teaching University and found a doctor who diagnosed me

with PA, RA, Osteoarthritis, Osteoporosis, Facets disease, spondylitis,

lumbar disc disease, fibromyalgia, and stenosis. Before I saw him, I was

only told I had asthma and fibromyalgia. So my joints aren't in very good

shape right now. I will turn 50 in June.

Like you, very few medications have helped me. I tried all the new ones and

the old ones on the market. Some made me seriously ill, like Humira, which

left me with a chest infection that lasted for almost 5 months. I ended up

on 60mg of predinsone and still am on 12mg everyday. I've had to take it

now for over 3 years and I've hated every minute of it. I know what it can

do to me, from watching my parents taking it every day with emphysema. Yet

the once I get below 10mg, I usually end up unable to walk on my feet within

a week of lowering the dose. So I am dealing with Cushing's as well now.

I personally would do what ever I could to keep my job and my career going

if it's that important to you. Retiring early always sounds great but the

problem is if you are like me, you don't feel good enough to do anything

anyway. If you could work part-time that might work out if you health doesn

't improve. You are at a point that a lot of us have to face, life changing

decisions.and it isn't fun and can be very life shattering.

One book I would suggest you read is called " The Anatomy of Hope by Dr.

Groopman. He is a cancer specialist and at first I thought the book would

be depressing, but I've read it twice now and it really has inspired me to

hold on to hope. He is a wonderful person, if he is half the person he

writes about in the book, and it might inspire you as much as it has me.

* All I can really say is welcome to our little piece of the world.

The people here are amazing. They are bright, creative and caring beyond

words. I've learned more from this group than my doctors have ever had the

time to tell me about my disease. Not to mention the companionship and

friendship I've made in the past few years, when otherwise, I'm home most of

the day alone. (Of course, my two little dogs keep me company and brighten

my day as well.) I hope you are one of the lucky ones who go into

remission and don't have many problems in the future. We are here for you

no matter what your future holds. Take care and let us know how you are

doing. Fran

*

* PS I've had more luck with Pain management for treatment, than