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Harold, the 80% pertains to several rheumatic diseases

not just RA. Polymyositis, dermatomyositis,

Scleraderma, Lupus just to mention a few others!

But I do agree that we need to obtain 2nd opinions. I

had just the opposit experience. My MRI showed a

miniscus tear in my left knee and that was what we

thought was causing me to fall when I ran and also

causing the pain. I had the knee surgery and all they

did was to clean out some junk. But my symptoms became

worse until I approached my family physician and then

began the testing, EMG, Blood work and finally muscle

biopsy. AP ahs worked wonders for me and I am working

on year number 3.

--- " Harald Weiss, Technical Marketing Group "

<hweiss@...> wrote:

> ,

>

> You state that the AP works for about 80% of people.

> That is for 80%

> of people with RA. One problem is that there are

> other rheumatic

> diseases, such as polymyalgia rheumatica, and even

> physical injuries,

> which produce many of the same symptoms as RA -- but

> are not RA.

> These diseases and physical conditions may not

> respond to the AP. I

> was misdiagnosed as having RA over 5 years and later

> found to have

> had a meniscal knee tear all along. I think many of

> us should get

> second opinion diagnoses, especially those among the

> 20% who do not

> respond to the AP.

>

> Sincerely, Harald

>

>

> At 05:04 AM 3/27/2007, Ken and wrote:

>

> >I haven't been following this thread closely, but

> didn't Dr. Brown

> >say the AP works for about 80% of people? We are

> all different. In

> >an ideal world the AP would work for 100% of

> people. While it's

> >clear that we as a group support the use of the AP

> alone, I think we

> >need to support those who need modifications to

> stop permanent joint

> >damage in some cases and who need some quality of

> life through

> >additional means when the AP does not work enough.

> We can be clear

> >and confident, not threatened, in stating our

> position, but not

> >overly critical to those in the 20% group. We are a

> support group.

> >Just my opinion.

> >

> >

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  • 1 year later...

Hello Stan,

I don't think it would hurt at all to get a second opinion. RA is a very

serious disease and the medications used to treat it are very powerful, so you'd

want to be completely comfortable in the course that your taking to treat it.

My rheumatologist sent me for a second opinion before we started some of the

heavier drugs. Both of the doctors agreed on the course of treatment and for

awhile I was seeing both (they were working together on my treatment). I feel I

was lucky because I found two doctors who I really liked and had a lot of faith

in what they were proposing for me. I do think that if I was in your shoes, I'd

get a second opinion. You may end up finding a doctor who works better for you

and who you feel more comfortable with.

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

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  • 8 months later...

Jocelyn,

We got a second opinion from a pediatric craniofacial surgeon. They prescribed

physical therapy for my son's torticollis and suggested the plagio wasn't too

bad and would self-correct. We were surprised that they basically said the same

thing as the first pediatrician. We continued on to Cranial Tech because we

didn't want to take the chance on it not self-correcting. By the time we got to

Cranial Tech, he was at 17mm asymmetry. Our third opinion came from a

pediatrician that had been recommended to us by a friend. That pediatrician

wrote the prescription for the DOC Band after taking one look at his head. We

were glad to finally find a doctor who shared our concern...and were surprised

that the specialist didn't. I guess I just expected them to be as alarmed as I

was by the shape of our son's head. The specialist did send us to physical

therapy, which has helped his tort. We graduated from the band last week, but

are continuing the physical therapy as it has helped tremendously.

Hope that helps.

Jill

Cade's mom (7 mo., DOC Band graduate, 8/5/09)

>

> I've searched the past posts for ideas of what type of physician to see for a

second opinion on the treatment of plagiocephaly. It appears most people go to

a neurosurgeon or cranial plastic surgeon. Could anyone that got a second

opinion from either one share their experience? I'm curious what insight or

solutions these specialists may have.

>

> Thanks!

>

> Jocelyn

> ton, Illinois

>

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Our second opinion was from a neurosurgeon and our third opinion was from a rehab doctor of some sort that worked at the cranial clinic. She is the one to go to. We were mostly sent to the neurosurgeon to rule out craniosyntosis and because my daughter also has microcephaly. After he told me that the head would round out on it's own (which contridicted the ped's words), I called the ped back and got the referral to the cranial cervical clinic at KKI here in Baltimore.

From what I've heard, most of the nuerosurgeons believe that the problem is a cosmetic one and cosmetic issues don't need treatment so they'll more than likely NOT recommend a band. I wanted treatment whether or not it was cosmetic so it depends upon how strongly you want a round head in the end.

Second Opinions

I've searched the past posts for ideas of what type of physician to see for a second opinion on the treatment of plagiocephaly. It appears most people go to a neurosurgeon or cranial plastic surgeon. Could anyone that got a second opinion from either one share their experience? I'm curious what insight or solutions these specialists may have. Thanks!Jocelynton, Illinois

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