New Doctor visit today

May 20, 2004

Went to a new doctor today - I thought I was going to get a physical,

but I just got to meet the doctor and get to know him. My hubby who

saw him last year for a physical thought he would be a 'partner'

doctor - but turns out he's a different kind - can't remember the

designation right now - but he's the type that will just order

whatever tests you ask for. For me that works out ok, although I

wish he were the 'partner' type. Who knows, maybe my personallity

wouldn't work with the partner type.

Anyway - I told him about EDS - he didn't bat an eye, I told him I

wasn't after an official dx, but just symptom treatment - mostly for

chronic pain - and that I'm not interested in meds right now. I can

generally keep the pain at workable levels with yoga and trigger

point therapy and diet, etc. He offered up vioxx or celebrex if I

wanted them - he felt that they were easier on your stomach than

other pain relievers, although there is some possible kidney

problems. He did say he would give me a referal to the PT that I

want to see - and will do an 'echo' to check for mitral valve

prolapse.

I also spoke with him about my daughter who I suspect has POTS - at

least some form of it - he suggested a lot of the usual tests, but

recommended first to have cbc and blood sugar done - so I'll have

them do that at her yearly check up first week of June. Actually I

think I will ask for it for all the girls as their turns come about

since with our history it would just be a good idea.

I'm not sure if he believed me about the EDS, and didn't even ask to

see any of my limited hypermobile tricks.

I wasn't sure on the way home if it was a good visit or not - I was

there almost 2 hours, with all the waiting, and I was extreamly

stressed out - my blood pressure was pretty high for me. My temp was

high, too, which is unusual - except that it is really hot here

today. On top of it all, they weighed me at the begining of the

visit, and I was 10lbs more that at home - and I own a fairly new and

accurate scale - makes me think that those scales are deliberately

set high to make us feel fat and unworthy so we will listen to the

doctor better.

However, I decided if he will order tests that I ask and give me the

referals I need it can't be too bad.

I'm thinking about switching the girls from their regular ped to this

place (it's family practice) so they can keep tabs on all of us. Of

course, I'm the one keeping tabs on us no matter where we go.

However, this office was much less chaotic than the regular ped -

another plus.

May 23, 2004

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

From: mohrs6

Sent: Thursday, May 20, 2004 6:37 PM

I'm not sure if he believed me about the EDS, and didn't even ask to

see any of my limited hypermobile tricks.

Hi :

I also thought that my 17 yr. old had limited hypermobility until our

visit to Dr. Grubb when with his clinical abilities he was able to very

easily dislocated both her shoulders while standing and show us how her

hips could dislocate when lying, with his moving her leg in a relatively

normal way. This was without her feeling even a wince of pain. This is

very abnormal and not possible with the average person. NO ONE will

ever tell me she does not have HEDS, or that she has Benign

Hypermobility and have me believe them.

We have been to many, many doctors and none before had this expertise,

or chose to clarify her hypermobility. I think most doctors just do not

have the necessary skill training, education re Hypermobility.

Regards, Bernie

May 23, 2004

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

From: mohrs6

Sent: Thursday, May 20, 2004 6:37 PM

I'm not sure if he believed me about the EDS, and didn't even ask to

see any of my limited hypermobile tricks.

Hi :

I also thought that my 17 yr. old had limited hypermobility until our

visit to Dr. Grubb when with his clinical abilities he was able to very

easily dislocated both her shoulders while standing and show us how her

hips could dislocate when lying, with his moving her leg in a relatively

normal way. This was without her feeling even a wince of pain. This is

very abnormal and not possible with the average person. NO ONE will

ever tell me she does not have HEDS, or that she has Benign

Hypermobility and have me believe them.

We have been to many, many doctors and none before had this expertise,

or chose to clarify her hypermobility. I think most doctors just do not

have the necessary skill training, education re Hypermobility.

Regards, Bernie

May 23, 2004

Bernie,

Thanks for the encouragement. I agree that many doctors don't have

adequate expertise - and since I know I will just keep after what I

need to get 'better'

I am truely glad you were able to find a doctor to give a correct

dx. So amazing what some human bodies can do that they probably

shouldn't Seems to me that knowing what is going on is half the

battle to taking charge and getting 'better'. A 'clued in' doctor

must also be a tremendous help. I used to have a doctor that was

willing to listen and learn, but he moved away

I also appreciate your willingness to share so that I know I am on

the right track and not alone.

>

> -----Original Message-----

> From: mohrs6 [mailto:jbmohr@n...]

> Sent: Thursday, May 20, 2004 6:37 PM

>

> I'm not sure if he believed me about the EDS, and didn't even ask

to

> see any of my limited hypermobile tricks.

>

> Hi :

> I also thought that my 17 yr. old had limited hypermobility until

our

> visit to Dr. Grubb when with his clinical abilities he was able to

very

> easily dislocated both her shoulders while standing and show us how

her

> hips could dislocate when lying, with his moving her leg in a

relatively

> normal way. This was without her feeling even a wince of pain.

This is

> very abnormal and not possible with the average person. NO ONE will

> ever tell me she does not have HEDS, or that she has Benign

> Hypermobility and have me believe them.

>

> We have been to many, many doctors and none before had this

expertise,

> or chose to clarify her hypermobility. I think most doctors just

do not

> have the necessary skill training, education re Hypermobility.

> Regards, Bernie

May 23, 2004

Bernie,

Thanks for the encouragement. I agree that many doctors don't have

adequate expertise - and since I know I will just keep after what I

need to get 'better'

I am truely glad you were able to find a doctor to give a correct

dx. So amazing what some human bodies can do that they probably

shouldn't Seems to me that knowing what is going on is half the

battle to taking charge and getting 'better'. A 'clued in' doctor

must also be a tremendous help. I used to have a doctor that was

willing to listen and learn, but he moved away

I also appreciate your willingness to share so that I know I am on

the right track and not alone.

>

> -----Original Message-----

> From: mohrs6 [mailto:jbmohr@n...]

> Sent: Thursday, May 20, 2004 6:37 PM

>

> I'm not sure if he believed me about the EDS, and didn't even ask

to

> see any of my limited hypermobile tricks.

>

> Hi :

> I also thought that my 17 yr. old had limited hypermobility until

our

> visit to Dr. Grubb when with his clinical abilities he was able to

very

> easily dislocated both her shoulders while standing and show us how

her

> hips could dislocate when lying, with his moving her leg in a

relatively

> normal way. This was without her feeling even a wince of pain.

This is

> very abnormal and not possible with the average person. NO ONE will

> ever tell me she does not have HEDS, or that she has Benign

> Hypermobility and have me believe them.

>

> We have been to many, many doctors and none before had this

expertise,

> or chose to clarify her hypermobility. I think most doctors just

do not

> have the necessary skill training, education re Hypermobility.

> Regards, Bernie

May 23, 2004

: Your welcome. If I could spare one child the grief and

additional pain of not being believed and not attended to, perhaps my

experience will not be in vain.

Bernie.

Re: New Doctor visit today

Bernie,

Thanks for the encouragement. I agree that many doctors don't have

adequate expertise - and since I know I will just keep after what I

need to get 'better'

May 23, 2004

: Your welcome. If I could spare one child the grief and

additional pain of not being believed and not attended to, perhaps my

experience will not be in vain.

Bernie.

Re: New Doctor visit today

Bernie,

Thanks for the encouragement. I agree that many doctors don't have

adequate expertise - and since I know I will just keep after what I

need to get 'better'

May 24, 2004

Bernie - I think one of the many things I need to do is become more

aware of my body and what is actually going on - and also to teach my

kids that. Today as I was walking I started to feel pain in my

leg/hip area - I know it is muscle pain - however, it happens most

everytime I go out and walk with longish strides. So today, after

reading your other post, I started thinking what exactly was causing

the muscle pain - and knowing what I do know about my body, I think

that the femur is subluxing a bit. I know that my femur has subluxed

a lot in the past, and am just now realizing that it might be

happening a lot more frequently. Now the question is what do I do

about it and how exactly do I help the girls who also have had femur

subluxations in the past. They haven't had much pain with all these

crazy subluxations yet - but I know the pain is coming. Somedays I

feel overwhelmed and others I'm ready to take on the world - guess

that's life.

Anyway - that was a long way to say - keep educating everyone!!

Every bit helps!

> : Your welcome. If I could spare one child the grief and

> additional pain of not being believed and not attended to, perhaps

my

> experience will not be in vain.

> Bernie.

>

> Re: New Doctor visit today

>

> Bernie,

>

> Thanks for the encouragement. I agree that many doctors don't have

> adequate expertise - and since I know I will just keep after what I

> need to get 'better'

May 24, 2004