Newly diagnosed

[Guest guest]

Thank you Anne,

I am worried sometimes, but other times I am not. My goal is to get Zandrr into a mainstream classroom by the age of 5. I think he can do itAnne <bridgymck@...> wrote:

Yes, I can definately relate. I was in the same spot as you 3-4 years ago. My son doesn't show every sign of Asperger's, and that was kind of disturbing when he was first diagnosed - I kept wondering if it were really an accurate diagnosis, kept thinking to myself that it really couldn't be true, even thought I knew in my heart it was.The more I got to know other kids with HFA/AS the more I realized that the different aspects of Asperger's are almost like a bink of dimmer switches in each kid, and each kid's switches are set on various levels. Very few of the kids I know are exactly alike - and yet they aren't exactly different either. It occurred to me I should be thrilled my ds doesn't have every sign of AS!! We have enough to work on without having to work on every single diagnostic

criteria!! My son is in an all AS class and the fact that every kid isn't working on exactly the same issue is wonderful - they can be models for each other. It sounds like you have good instincts about your son, and that will really help you a lot.Time helps ease the shock of the diagnosis, but so does knowledge and getting to know other families going through similar situations. You will be amazed how quickly kids begin to develop once they are in therapies and you begin working with them at home too. I hope you find yourself looking back in a couple of years and getting to realize how far you and your son have come.Anne, Mom to Jack, 7.3, AS, DSI, ADD > >he shows many of the signs, such as the distant > stare, trouble transitioning, obsessive interests, but also strongly

> shows signs that don't apply, such as pointing out objects of > interest and initiating conversations. I find this all very > confusing, especially the contradictions!

Corinne Zemliak

FourPointGroup

http://zemliak.fourpointmoms.com

http://zemliak.fourpointwellness.com

czemliak@...

(818)268-5637 Cell MSN IM: corinnezemliak@... IM: czemliak@... AOL IM :corinnezemliak@...

[Guest guest]

I wanted to chime in here even though I am new here this week.

My son is in the process of getting his AS diagnosis very late...at 11.

Every thing you have all been saying tonight about your 4 and 5 year olds takes me back to being right where you are. You are all very fortunate that the red flags were noticed by someone because no one told me back then that this all added up to something. I just thought he was a little delayed and a little "quirky" so I did not seek any help for him. I've since had several "professionals" miss the AS because my son was socially outgoing "just really bad at it!" and he showed affection (sometimes to much to the wrong people lol), he also could maintain some eye contact. They never even considered AS because of these facts. He has virtually every other feature of AS and general PDD.

Because this was missed for so long I am dealing with tremendous guilt for overlooking the obvious so many years ago. The opportunities he'd have had for OT and ST could have helped us be so much further by now. maybe my son would be able to ride a bike by now.

So, even though it may be upsetting for you right now, your children will have a much better start because of it.

-Charlotte

Re: newly diagnosed

Yes, I can definately relate. I was in the same spot as you 3-4 years ago. My son doesn't show every sign of Asperger's, and that was kind of disturbing when he was first diagnosed - I kept wondering if it were really an accurate diagnosis, kept thinking to myself that it really couldn't be true, even thought I knew in my heart it was.The more I got to know other kids with HFA/AS the more I realized that the different aspects of Asperger's are almost like a bink of dimmer switches in each kid, and each kid's switches are set on various levels. Very few of the kids I know are exactly alike - and yet they aren't exactly different either. It occurred to me I should be thrilled my ds doesn't have every sign of AS!! We have enough to work on without having to work on every single diagnostic criteria!! My son is in an all AS class and the fact that every kid isn't working on exactly the same issue is wonderful - they can be models for each other. It sounds like you have good instincts about your son, and that will really help you a lot.Time helps ease the shock of the diagnosis, but so does knowledge and getting to know other families going through similar situations. You will be amazed how quickly kids begin to develop once they are in therapies and you begin working with them at home too. I hope you find yourself looking back in a couple of years and getting to realize how far you and your son have come.Anne, Mom to Jack, 7.3, AS, DSI, ADD > >he shows many of the signs, such as the distant > stare, trouble transitioning, obsessive interests, but also strongly > shows signs that don't apply, such as pointing out objects of > interest and initiating conversations. I find this all very > confusing, especially the contradictions!

[Guest guest]

Welcome to the group Michele. Sorry to hear that you have The big "A" but the pluss side is that you have found us here. There is a lot of poeple here that will support you and talk to you about the ins and outs of this disease. Once again welcom to the group.

in Suffolk

[Guest guest]

Hi Michele, welcome to the group. Sorry you have to be a part of this group, but at least you're not in this alone!

There are a few people here in the group who have had surgery at TCC, so I'll let them tell you about Dr. Rice. I met him at a medical conference a little over a year ago, and I liked him a lot -- and you sure can't beat his experience level! I will definitely be going to TCC when the time comes for me to have surgery.

Debbi in Michigan

Hello everyone, My name is Michele I have been diagnosed with achalasia. Around christmas time I began vomiting in my sleep. I went to my primary doctor who sent me for an barium swallow which showed achalasia. I then went to a GI physician who performed endoscopy and manometry which both came back showing achalasia. I then meet with two surgeons in the Saint Louis area, one has done 12 heller-myotomy and the other has done 15 Heller-myotomy. I am not comfortable with so few cases so I am going to the Cleveland Clinic to see Dr. Rice. Does anyone have any feedback in regards to Dr. Rice, traveling after surgery, Physicians that my be located closer to Saint Louis? Any feedback would be appreciated.Thank You,Michele

[Guest guest]

Hi Michele,

Sorry you have A but we welcome you and hope you will get some help soon.

Please feel free to ask questions and someone will be sure to be able to

guide you along.

Good wishes,

Joan

newly diagnosed

> Hello everyone,

> My name is Michele I have been diagnosed with achalasia. Around

> christmas time I began vomiting in my sleep. I went to my primary

> doctor who sent me for an barium swallow which showed achalasia. I

> then went to a GI physician who performed endoscopy and manometry

> which both came back showing achalasia. I then meet with two

> surgeons in the Saint Louis area, one has done 12 heller-myotomy and

> the other has done 15 Heller-myotomy. I am not comfortable with so

> few cases so I am going to the Cleveland Clinic to see Dr. Rice. Does

> anyone have any feedback in regards to Dr. Rice, traveling after

> surgery, Physicians that my be located closer to Saint Louis? Any

> feedback would be appreciated.

> Thank You,

> Michele

>

>

>

>

>

>

>

[Guest guest]

-Michele,

Try the database section in the green box on the left side of the home

page. The first listing is for doctor referals. You should be able

to find something there to start.

[Guest guest]

I understand, it is hard to accept taking meds at all, much less for

life. Recent revelations about how drug companies approve and sell

them does little to increase confidence. Yes, they are controlled for

consistency and ingredients, which most " health food " preparations are

not, but what many doctors don't seem to understand is that it is the

very power of these chemically created substances that worries people.

The whole idea of " anti " this or that, of fighting nature back into

some kind of truce--for which prices are always paid somewhere--is

disquieting.

As a researcher used to looking at these, I can only say there is more

longrange clinical experience with spiro than inspra, currently the

only aldo/K/BP balancers that seem to work. The so-called " side

effects " (that's a Pharmo PR term, my own term is " drug toxicity " )

don't seem to plague the majority of female pts, and the androgyn

suppression for males varies. With a careful DASH low salt diet, the

med amounts may be reduced significantly, or even eliminated if

exercise and general health is achieved. Maybe. Sure seems worth a

shot.

The leading Chinese Western physician & Peking-university trained

accupuncturist in our area, Darren Chen, MD, said in a recent interview

about some projects he participates in to utilise the best from both

worlds, " no, I'm afraid this is one of the diseases involving multiple

systems centered on salt metabolism, something the naturopathic and

alternative practitioners who are honest will tell you is uncovered in

their systems. They can treat symptoms and look at it in another way,

but to stay salt and potassium balanced and keep your blood pressure in

the safety range, you're pretty much going to have to block the excess

aldosterone and limit salt in diet. " It is interesting that the salt,

or electrolyte metabolism is impressing the Western research community

as a possible " governing system over all others, " and this work is

exciting, often listed under " calcium metabolism. "

I wish I had met him earlier, but was just listening to standard

medical boilerplate, which is incorrect in the case of PA. Mostly, it

turns out, because for a very long time Western doctors thought it is

so rare. It isn't, and the big institutions are rushing around

changing their statements now.

Of course there is a chance a tumor is causing all of it, in which case

you'll be free of meds. The ACTH-stimulated AVS is a procedure which

has been made very safe, and I haven't heard of a flank-opening

adrenalectomy in my neck of the woods in years. The laporoscopy is

well-practiced and safe. I'd just make sure someone knows the gland is

producing excess aldo, and then that both surgeons (AVS &

adrenalecomty) have say, at least a hundred procedeures under their

belts.

How can anyone learn, if we all demanded this? At teaching hospitals

with faculty who've done hundreds right there. At UCSF, this is what

they do.

Just my 2 cents.

Dave

On Jul 6, 2005, at 2:34 PM, joidevivre2day wrote:

> Hi,

> I'm newly diagnosed with Primary Hyperaldosteronism. I'm still getting

> tests. Just about to get the adrenal sampling. I'm terrified of the

> possibility of taking Spirorolactone (forgot the spelling) for the rest

> of my life. I've always taken good care of my body and the thought of

> that medicine scares me. Any advice on holistic approaches used? Any

> information/personal experiences with this medication? I've heard some

> people can get the laporoscopy in medical centers rather than the cut

> if surgery is required, I live in Fredericksberg VA. Do you know of

> centers who do the smaller incisions. Any of your personal experiences

> would be appreciated.

> Thanks

>

>

[Guest guest]

Hi,

I was just diagnosed with primary Hyperaldosteronism in Feb 2005, I have

been on SPIRO since then and have been feeling fine, I did not need the

surgey because I did not have a tumor on my glands. i do take Shape works

(Herbalife) supplements and had no side effects from using the 2 together.

Tracey

newly diagnosed

Hi,

I'm newly diagnosed with Primary Hyperaldosteronism. I'm still getting

tests. Just about to get the adrenal sampling. I'm terrified of the

possibility of taking Spirorolactone (forgot the spelling) for the rest

of my life. I've always taken good care of my body and the thought of

that medicine scares me. Any advice on holistic approaches used? Any

information/personal experiences with this medication? I've heard some

people can get the laporoscopy in medical centers rather than the cut

if surgery is required, I live in Fredericksberg VA. Do you know of

centers who do the smaller incisions. Any of your personal experiences

would be appreciated.

Thanks

[Guest guest]

You have nothing to worry about. I did enough worrying about taking

Spiro AND having adrenal vein sampling for ALL of us (ha ha). The AVS

was a breeze, and I have been on Spiro for over a week - no side

effects at all. In fact, I feel better and have more energy than I

have in a long time. Still on K supplements too, but may be weaned off

those next week.

Hang in there. It is so worth just knowing your exact diagnosis.

Medication should be tried before surgery, in my opinion.

I don't live in your area, but check out the Society of Interventional

Radiologists website (not sure of the URL); that is where I found my

wonderful doctor for the procedure.

Best of luck! Everything will be fine.

Ann

> Hi,

> I'm newly diagnosed with Primary Hyperaldosteronism. I'm still

getting

> tests. Just about to get the adrenal sampling. I'm terrified of the

> possibility of taking Spirorolactone (forgot the spelling) for the

rest

> of my life. I've always taken good care of my body and the thought

of

> that medicine scares me. Any advice on holistic approaches used?

Any

> information/personal experiences with this medication? I've heard

some

> people can get the laporoscopy in medical centers rather than the cut

> if surgery is required, I live in Fredericksberg VA. Do you know of

> centers who do the smaller incisions. Any of your personal

experiences

> would be appreciated.

> Thanks

[Guest guest]

KEEP US POSTED.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

READ MY ARTICLE AND TAKE A COPY TO YOUR ENDO.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Be sure they do ACTH infusion before and during the AVS.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

In a message dated 7/7/05 10:23:40 AM, tbelboda@... writes:

i do take Shape works

(Herbalife) supplements

I HAVE NO IDEA WHAT IS IN THIS AND do not recommend anyone take these uncontrolled products.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

the Yellow Emperor had it right a long time ago-4000 years ago I belive. When to much salt is taken the pulse hardens and strokes arise.

In a message dated 7/6/05 8:31:33 PM, dave@... writes:

I understand, it is hard to accept taking meds at all, much less for

life.   Recent revelations about how drug companies approve and sell

them does little to increase confidence.  Yes, they are controlled for

consistency and ingredients, which most "health food" preparations are

not, but what many doctors don't seem to understand is that it is the

very power of these chemically created substances that worries people. 

The whole idea of "anti" this or that, of fighting nature back into

some kind of truce--for which prices are always paid somewhere--is

disquieting.

As a researcher used to looking at these, I can only say there is more

longrange clinical experience with spiro than inspra, currently the

only aldo/K/BP balancers that seem to work.   The so-called "side

effects" (that's a Pharmo PR term, my own term is "drug toxicity")

don't seem to plague the majority of female pts, and the androgyn

suppression for males varies.   With a careful DASH low salt diet, the

med amounts may be reduced significantly, or even eliminated if

exercise and general health is achieved.  Maybe.  Sure seems worth a

shot.

The leading Chinese Western physician & Peking-university trained

accupuncturist in our area, Darren Chen, MD, said in a recent interview

about some projects he participates in to utilise the best from both

worlds, "no, I'm afraid this is one of the diseases involving multiple

systems centered on salt metabolism, something the naturopathic and

alternative practitioners who are honest will tell you is uncovered in

their systems.  They can treat symptoms and look at it in another way,

but to stay salt and potassium balanced and keep your blood pressure in

the safety range, you're pretty much going to have to block the excess

aldosterone and limit salt in diet."  It is interesting that the salt,

or electrolyte metabolism is impressing the Western research community

as a possible "governing system over all others," and this work is

exciting, often listed under "calcium metabolism."

I wish I had met him earlier, but was just listening to standard

medical boilerplate, which is incorrect in the case of PA.  Mostly, it

turns out, because for a very long time Western doctors thought it is

so rare.  It isn't, and the big institutions are rushing around

changing their statements now.

Of course there is a chance a tumor is causing all of it, in which case

you'll be free of meds.  The ACTH-stimulated AVS is a procedure which

has been made very safe, and I haven't heard of a flank-opening

adrenalectomy in my neck of the woods in years.  The laporoscopy is

well-practiced and safe.  I'd just make sure someone knows the gland is

producing excess aldo, and then that both surgeons (AVS &

adrenalecomty) have say, at least a hundred procedeures under their

belts.

How can anyone learn, if we all demanded this?  At teaching hospitals

with faculty who've done hundreds right there.  At UCSF, this is what

they do.

Just my 2 cents.

Dave

On Jul 6, 2005, at 2:34 PM, joidevivre2day wrote:

> Hi,

> I'm newly diagnosed with Primary Hyperaldosteronism.  I'm still getting

> tests.  Just about to get the adrenal sampling.  I'm terrified of the

> possibility of taking Spirorolactone (forgot the spelling) for the rest

> of my life.  I've always taken good care of my body and the thought of

> that medicine scares me.  Any advice on holistic approaches used?  Any

> information/personal experiences with this medication?  I've heard some

> people can get the laporoscopy in medical centers rather than the cut

> if surgery is required, I live in Fredericksberg VA.  Do you know of

> centers who do the smaller incisions.  Any of your personal experiences

> would be appreciated.

> Thanks

>

>

[Guest guest]

Ann,

I'd like to know what was your worry about taking Spiro? People say

that it has bad side effects but from what I've read I don't find

the side effects to be any worse than any other drug. However, last

night I found a site that said Spiro caused tumors in laboratory

rats. But they usually give lab animals mgs. much highter than a

human would take. Anyway I decided to ask my endo for a trial of

Spiro to see if it will help my usually higher than normal bp and my

low K. I'm on several bp meds now and have to always take potassium

to keep my k from going too low. I added Spiro yesterday to my drug

treatment and I hope it helps.

Gloria

> You have nothing to worry about. I did enough worrying about

taking

> Spiro AND having adrenal vein sampling for ALL of us (ha ha). The

AVS

> was a breeze, and I have been on Spiro for over a week - no side

> effects at all. In fact, I feel better and have more energy than

I

> have in a long time. Still on K supplements too, but may be

weaned off

> those next week.

>

> Hang in there. It is so worth just knowing your exact diagnosis.

> Medication should be tried before surgery, in my opinion.

>

> I don't live in your area, but check out the Society of

Interventional

> Radiologists website (not sure of the URL); that is where I found

my

> wonderful doctor for the procedure.

>

> Best of luck! Everything will be fine.

>

> Ann

>

[Guest guest]

Typically, Spiro is much more difficult for men to tolerate than for women to. I liked Spiro and am thinking of asking Dr. Grim his thoughts on switching back from Inspra. I've got at least nine new or healing blemishes on my face right now, at least half of which are causing a fair amount of discomfort (not to mention humiliation...). BUT, I'm not suggesting the Inspra is causing that (I had some skin problems prior to PA, but not as severe), however, the Spiro DOES prevent it.... a nice little side effect that I enjoyed in Spiro.

Re: newly diagnosed

Ann,I'd like to know what was your worry about taking Spiro? People say that it has bad side effects but from what I've read I don't find the side effects to be any worse than any other drug. However, last night I found a site that said Spiro caused tumors in laboratory rats. But they usually give lab animals mgs. much highter than a human would take. Anyway I decided to ask my endo for a trial of Spiro to see if it will help my usually higher than normal bp and my low K. I'm on several bp meds now and have to always take potassium to keep my k from going too low. I added Spiro yesterday to my drug treatment and I hope it helps.Gloria> You have nothing to worry about. I did enough worrying about taking > Spiro AND having adrenal vein sampling for ALL of us (ha ha). The AVS > was a breeze, and I have been on Spiro for over a week - no side > effects at all. In fact, I feel better and have more energy than I > have in a long time. Still on K supplements too, but may be weaned off > those next week.> > Hang in there. It is so worth just knowing your exact diagnosis. > Medication should be tried before surgery, in my opinion.> > I don't live in your area, but check out the Society of Interventional > Radiologists website (not sure of the URL); that is where I found my > wonderful doctor for the procedure.> > Best of luck! Everything will be fine.> > Ann>

[Guest guest]

I couldn't risk it, for as my endo said, " minerals have made you

symptomatic before. " That in addition to the unknowns.

Even Vitamin C and other concentrated acids create salt in the body for

some. . .

Dave

On Jul 7, 2005, at 10:32 PM, lowerbp2@... wrote:

>

> In a message dated 7/7/05 10:23:40 AM, tbelboda@...

> writes:

>

>

>> i do take Shape works

>> (Herbalife) supplements

>

>

> I HAVE NO IDEA WHAT IS IN THIS AND do not recommend anyone take these

> uncontrolled products.

>

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

> Clinical Professor of Medicine and Epidemiology

> Director, Hypertension Diagnosis and Treatment Center

> Board Certified in Internal Medicine, Geriatrics and Hypertension

>

> Published over 220 scientific papers, book chapters and 220 abstracts

> in the area of high blood pressure epidemiology, physiology,

> endocrinology measurement, treatment and how to detect curable causes.

> Listed in Best Doctors in America

> Specializing in Difficult to Control High Blood Pressure and the

> History and Physiology of High Blood pressure in the African Diaspora

>

>

[Guest guest]

In a message dated 7/8/05 5:06:46 AM, dave@... writes:

Even Vitamin C and other concentrated acids create salt in the body for

some. . .

I assume by this "salt" you dont mean sodium.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Hi Sammi,

I believe that I have Chondromalacia also. The website that you visited

sounds informative. Can you direct me to the particular website that you

consulted,

Thank you!

Rob

[Guest guest]

Sigh. Arthritis is a degenerative disease, an inflammatory process, of unknown

origin that has its source in the bone itself. I have arthritis in my finger

joints and I can tell you that it began IN the bone. Whatever was/is going on

in there eats the bone away at the joint.

Chondromalacia is caused by malalignment of the patella w/respect to the femur

so that they rub together & scrape articular cartilage off, and is not, in and

of itself, degenerative or inflammatory. They are not the same. I'm actually

amazed that your doc agrees with this because most everyone else is not using

their brain.

Unfortunately MRI's don't show everything, but if you only have discrete spots

of worn cartilage, and if (a) you have an extra $15K, or ( your insurance

would pay for a procedure the FDA hasn't approved here yet, you could get

SaluCartilage implants (enter " Salucartilage " in Google) in Europe or Canada

(they're made here, ironically) and get on with your life. The FDA will

eventually approve these things here -- they've been approved in Europe for 3.5

years and in Canada since last May. Unfortunately, the FDA has a habit of

letting Europe try out procedures on humans for 20 years before approving them

here (while on the other hand approving drugs that haven't been proven safe --

thanks to back-room handshakes with Pharma).

There is hope. Don't let anyone tell you you have to live with it. Keep on

doing research. Do what you need to do to keep the chondromalacia spots from

becoming larger (stop doing things that cause bone-on-bone grinding and/or use

McConnell tape).

I found 2 years of Glucosamine plus VMO exercises to be helpful. Not 100%, but

it got me off a cane & I can do all the walking I need to do in my daily stuff,

including going up & down my stairs a lot, w/o any pain, on-site or residual.

And a few weeks ago, I spent 3 days walking all of my neighborhood getting

signature for a petition, with no after-pain. I can even run if I need to. The

limiting factor there is my lungs. You may want to use McConnell tape during

VMO exercises.

OTOH here's an exercise that doesn't use as much vastus lateralis (i.e. pulls

laterally on the patella less) as leg extensions: Sit in a chair with your legs

crossed at the knee (bad over good). Lift your bad leg straight up while

extending it. Notice how it uses the VMO but not the VL so much.

As for anti-inflammatories, sure, the chondromalacia spots get inflamed if you

continue to let bone rub on bone. But you shouldn't do that anyway (use

McConnell tape). Anti-inflammatories are good for REAL arthritis because real

arthritis IS an inflammatory process. For chondromalacia the tradeoff

(compromised digestive lining) isn't worth it.

I'm not selling this, but all of you might want to look into Juvenon,

http://www.juvenon.com/science/overview.htm. It's acetyl-L-carnitine HCl, alpha

lipoic acid, biotin, and calcium (I looked these up separately to see if getting

them individually was cheaper but it's not). The person who originally came up

with the idea is Bruce N. Ames, UC Berkeley, after whom the Ames Assay is named

-- all biochemists in the world use the Ames Assay. He's NOT a snake-oil

salesman. Acetyl-L-carnitine stimulates biosynthesis of cardiolipin, needed by

mitochondria (which are in all cells) to maintain the integrity of their

membrane (we produce less of this as we age). The function of mitochondria is

to convert amino acids, fatty acids, and sugars into energy. Mitochondria

produce free radicals as they work (this is why subjects [many species] of the

study in 1997 or whenever it was lived longer if they ate less -- their

mitochondria did less work & produced fewer free radicals). The alpha lipoic

acid in Juvenon neutralizes free radicals. I just started taking this stuff, so

can't speak for its effectiveness. I don't like that it's patented, but they

do go into the science of it, and provide a bibliography of research. It's not

terribly expensive, either -- $40/mo, less if you buy more than one month at a

time. As a 63-year-old who is in denial about aging, I'll try just about

anything and this has a real scientist behind it (two, actually -- the Linus

ing Institute). They don't claim that it rebuilds cartilage, but I'm

thinking it could prevent it from deteriorating more, based on the fact that it

helps mitochondria do their job more effectively.

Ann

newly diagnosed

Yesterday in fact, was the long awaited result from my MRI scan (left

knee).

My Dr told me there was good news & bad news. The good news was no

serious damage to ligaments, the bad news I have chondromalacia and

there is nigh on little that can be done.. except take ibuprofen

(aadvil etc) or similar when it hurts.

I asked him directly if it was arthritis and he said no but it would

probably develop.

I looked online and one of the first sites I found said chondromalacia

is called osteoarthritis in sufferes over 30 (which I am).

So could somebody please tell me, who is right, me or the doc? Do I

have osteoarthritis, is the only 'treatment' taking anti-

inflammotories???

Thank you

[Guest guest]

Hi, all.

Ann, you obviously know a lot about this. Thanks for sharing. I would like

to add what I know as well, having had chondromalacia for over 10 years. I

think there is more than one cause of chondromalacia. One of the causes is

malignment, which I had.

Using NSAIDS (like Advil, ibuprofen, etc.), does help with inflammation, and

there is inflammation with chondromalacia -- it's caused when the body tries

to heal it self (synovitis, for example). BUT using NSAIDs for along time

has recently been shown in research to actually WEAR AWAY more cartilage in

some people. Not to add depressing news, but that is what my doctor told

me. It might be wise to talk to a doctor or look for that research if one

is taking a lot of NSAIDs.

If you don't want to wait for Salucartilage to be approved here, you may be

able to get the procedure that I had - ACI, which is approved here and has

been done for 10 years. One brand name for this is Carticel -

www.carticel.com will tell you all about it. I am not selling it either,

I'm simply telling you that I had this surgery and for me I think it's going

to be a godsend. I say " think " because it has a very slow healing time, and

I won't know for sure if it was successful for about 6 more months. It does

feel better, though, and there is actually less pain than on the left (which

still is missing the cartilage).

I hope this was helpful.

Deb

>From: " Ann " <ruby2zdy@...>

>Reply-chondromalacia treatment

><chondromalacia treatment >

>Subject: Re: newly diagnosed

>Date: Wed, 16 Nov 2005 23:18:34 -0800

>

>Sigh. Arthritis is a degenerative disease, an inflammatory process, of

>unknown origin that has its source in the bone itself. I have arthritis in

>my finger joints and I can tell you that it began IN the bone. Whatever

>was/is going on in there eats the bone away at the joint.

>

>Chondromalacia is caused by malalignment of the patella w/respect to the

>femur so that they rub together & scrape articular cartilage off, and is

>not, in and of itself, degenerative or inflammatory. They are not the

>same. I'm actually amazed that your doc agrees with this because most

>everyone else is not using their brain.

>

>Unfortunately MRI's don't show everything, but if you only have discrete

>spots of worn cartilage, and if (a) you have an extra $15K, or ( your

>insurance would pay for a procedure the FDA hasn't approved here yet, you

>could get SaluCartilage implants (enter " Salucartilage " in Google) in

>Europe or Canada (they're made here, ironically) and get on with your life.

> The FDA will eventually approve these things here -- they've been

>approved in Europe for 3.5 years and in Canada since last May.

>Unfortunately, the FDA has a habit of letting Europe try out procedures on

>humans for 20 years before approving them here (while on the other hand

>approving drugs that haven't been proven safe -- thanks to back-room

>handshakes with Pharma).

>

>There is hope. Don't let anyone tell you you have to live with it. Keep

>on doing research. Do what you need to do to keep the chondromalacia spots

>from becoming larger (stop doing things that cause bone-on-bone grinding

>and/or use McConnell tape).

>

>I found 2 years of Glucosamine plus VMO exercises to be helpful. Not 100%,

>but it got me off a cane & I can do all the walking I need to do in my

>daily stuff, including going up & down my stairs a lot, w/o any pain,

>on-site or residual. And a few weeks ago, I spent 3 days walking all of my

>neighborhood getting signature for a petition, with no after-pain. I can

>even run if I need to. The limiting factor there is my lungs. You may

>want to use McConnell tape during VMO exercises.

>

>OTOH here's an exercise that doesn't use as much vastus lateralis (i.e.

>pulls laterally on the patella less) as leg extensions: Sit in a chair

>with your legs crossed at the knee (bad over good). Lift your bad leg

>straight up while extending it. Notice how it uses the VMO but not the VL

>so much.

>

>As for anti-inflammatories, sure, the chondromalacia spots get inflamed if

>you continue to let bone rub on bone. But you shouldn't do that anyway

>(use McConnell tape). Anti-inflammatories are good for REAL arthritis

>because real arthritis IS an inflammatory process. For chondromalacia the

>tradeoff (compromised digestive lining) isn't worth it.

>

>I'm not selling this, but all of you might want to look into Juvenon,

>http://www.juvenon.com/science/overview.htm. It's acetyl-L-carnitine HCl,

>alpha lipoic acid, biotin, and calcium (I looked these up separately to see

>if getting them individually was cheaper but it's not). The person who

>originally came up with the idea is Bruce N. Ames, UC Berkeley, after whom

>the Ames Assay is named -- all biochemists in the world use the Ames Assay.

> He's NOT a snake-oil salesman. Acetyl-L-carnitine stimulates

>biosynthesis of cardiolipin, needed by mitochondria (which are in all

>cells) to maintain the integrity of their membrane (we produce less of this

>as we age). The function of mitochondria is to convert amino acids, fatty

>acids, and sugars into energy. Mitochondria produce free radicals as they

>work (this is why subjects [many species] of the study in 1997 or whenever

>it was lived longer if they ate less -- their mitochondria did less work &

>produced fewer free radicals). The alpha lipoic acid in Juvenon

>neutralizes free radicals. I just started taking this stuff, so can't

>speak for its effectiveness. I don't like that it's patented, but they do

>go into the science of it, and provide a bibliography of research. It's

>not terribly expensive, either -- $40/mo, less if you buy more than one

>month at a time. As a 63-year-old who is in denial about aging, I'll try

>just about anything and this has a real scientist behind it (two, actually

>-- the Linus ing Institute). They don't claim that it rebuilds

>cartilage, but I'm thinking it could prevent it from deteriorating more,

>based on the fact that it helps mitochondria do their job more effectively.

>

>Ann

> newly diagnosed

>

>

> Yesterday in fact, was the long awaited result from my MRI scan (left

> knee).

>

> My Dr told me there was good news & bad news. The good news was no

> serious damage to ligaments, the bad news I have chondromalacia and

> there is nigh on little that can be done.. except take ibuprofen

> (aadvil etc) or similar when it hurts.

>

> I asked him directly if it was arthritis and he said no but it would

> probably develop.

>

> I looked online and one of the first sites I found said chondromalacia

> is called osteoarthritis in sufferes over 30 (which I am).

>

> So could somebody please tell me, who is right, me or the doc? Do I

> have osteoarthritis, is the only 'treatment' taking anti-

> inflammotories???

>

> Thank you

>

>

>

>

>

>

>

>

[Guest guest]

Yes, I only mentioned the one thing - Salucartilage - because compared to the

other cartilage replacement methods, it's relative painless & the healing time

is about zero. I didn't mean to snub the other methods, and I've thought about

those myself, but the long healing times put me off. I hope that works well for

you.

Ann

newly diagnosed

>

>

> Yesterday in fact, was the long awaited result from my MRI scan (left

> knee).

>

> My Dr told me there was good news & bad news. The good news was no

> serious damage to ligaments, the bad news I have chondromalacia and

> there is nigh on little that can be done.. except take ibuprofen

> (aadvil etc) or similar when it hurts.

>

> I asked him directly if it was arthritis and he said no but it would

> probably develop.

>

> I looked online and one of the first sites I found said chondromalacia

> is called osteoarthritis in sufferes over 30 (which I am).

>

> So could somebody please tell me, who is right, me or the doc? Do I

> have osteoarthritis, is the only 'treatment' taking anti-

> inflammotories???

>

> Thank you

>

>

>

>

>

>

>

>

[Guest guest]

Okay, thanks. I just wanted to get the info. out there, as Carticel has

been approved here, and it can cover larger defects than it looks like

Salucartilage can.

>From: " Ann " <ruby2zdy@...>

>Reply-chondromalacia treatment

><chondromalacia treatment >

>Subject: Re: newly diagnosed

>Date: Thu, 17 Nov 2005 10:56:42 -0800

>

>Yes, I only mentioned the one thing - Salucartilage - because compared to

>the other cartilage replacement methods, it's relative painless & the

>healing time is about zero. I didn't mean to snub the other methods, and

>I've thought about those myself, but the long healing times put me off. I

>hope that works well for you.

>

>Ann

> newly diagnosed

> >

> >

> > Yesterday in fact, was the long awaited result from my MRI scan

>(left

> > knee).

> >

> > My Dr told me there was good news & bad news. The good news was no

> > serious damage to ligaments, the bad news I have chondromalacia and

> > there is nigh on little that can be done.. except take ibuprofen

> > (aadvil etc) or similar when it hurts.

> >

> > I asked him directly if it was arthritis and he said no but it would

> > probably develop.

> >

> > I looked online and one of the first sites I found said

>chondromalacia

> > is called osteoarthritis in sufferes over 30 (which I am).

> >

> > So could somebody please tell me, who is right, me or the doc? Do I

> > have osteoarthritis, is the only 'treatment' taking anti-

> > inflammotories???

> >

> > Thank you

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

there are numerous causes of Chondromalacia and the chondromalacia could simply

be caused by an imbalance in the strength of your quads, and physical therapy

can help this, sometimes eliminating the cause of the CP, your doctor might have

mentioned that option, that is normally the first line of treatment.

casey

---------------------------------

FareChase - Search multiple travel sites in one click.

[Guest guest]

Speaking of which I've finally found a PT who takes a holistic approach,

muscle-balance, etc. Wish I'd found her years ago.

Ann

Re: newly diagnosed

there are numerous causes of Chondromalacia and the chondromalacia could

simply be caused by an imbalance in the strength of your quads, and physical

therapy can help this, sometimes eliminating the cause of the CP, your doctor

might have mentioned that option, that is normally the first line of treatment.

casey

---------------------------------

FareChase - Search multiple travel sites in one click.