RE: Re:For Jill and Rhea - Cardioogist Visit in Hamilton

[Guest guest]

Bernadette,

I wonder if this doctor is simply going along with what Dr. Grubb has

suggested and feels that considering the source, there is nothing he will do

against that. Have you contacted Dr. Grubb at all since your initial

appointment, to see if he has any suggestions about follow-up?

Jill

[Guest guest]

Bernadette,

I wonder if this doctor is simply going along with what Dr. Grubb has

suggested and feels that considering the source, there is nothing he will do

against that. Have you contacted Dr. Grubb at all since your initial

appointment, to see if he has any suggestions about follow-up?

Jill

[Guest guest]

Bernadette,

I wonder if this doctor is simply going along with what Dr. Grubb has

suggested and feels that considering the source, there is nothing he will do

against that. Have you contacted Dr. Grubb at all since your initial

appointment, to see if he has any suggestions about follow-up?

Jill

[Guest guest]

Hi Rhea: Meaghan will be seeing Dr. Machino(sp.?) at NYG

on June 2/2004 and I have all sorts of chart info. for her. Should be

most interesting and hopefully informative. I hopes she can pull things

together for us, tho I do have a fairly good grasp of what is going on

with all my study of HEDS and dysautonomia.

So glad to hear the medical specialist was interested and empathetic. I

have spoken to a mother at the dyna site when she phoned re info re

Meaghan joining and from the conversation about her daughter I gathered

that her daughter has many of the same symptoms you experience with

tachycardia all the time about 140 to 160 bpm. There are a couple of 20

yr olds on the site and you may be able to link up with one if you join.

Debbie told me that invariably almost every teen has HEDS in varying

degrees and Dr. Grubb treats most of them. The DYNA 2003 Newsletter is

a very comprehensive and informative re POTS which you may well have,

and dysautonomia. It would be worth copying and taking to your next

appt. with your medical specialist, to let him know your knowledge of

the condition and for his information re treatment being used. There is

also a good article on that site by a Dr. Chemlinsky re abdominal

migraine and irritable bowel that is excellent to copy and for your

understanding. Hope this helps.

You are definitely making progress in your search for answers, be

assured of that. Meaghan's average heart rate on the Holter was 90, not

as high as yours, but still way too high for a 17 yr. old, particularly

when I know that her resting rate during the night runs at 62 -66 for 10

hours. I still think she has Mitral Valve Prolapse that they have not

diagnosed because her lightheadedness, dizziness subsides when she does

a squat. There was a vewry good article on MVP on the CEDA site I

believe, or a link to the article. Woth copying and taking to your med.

Specialists. Meaghan had that same 24. hr urine for chatecholamines

to check for an adrenal turmor, and extensive blood work done by a Sick

Kids medical specialist just as you are having done, so don't worry too

much about it, it will probably be negative just as Meaghan's was. I

really think that this tachycardia Meaghan has is all related to HEDS

and the too elastic blood vessels with extensive pooling in the limbs.

Meaghans pooling was exceeding obvious at that time and I still see how

her blood vessels in her feet and ankles bulge and are very blue shortly

after standing up.

Take care, Bernie

Re:For Jill and Rhea - Cardioogist Visit in Hamilton

I'm so sorry that the appt was dissapointing Bernie! I hope the next

appointment in 6 weeks goes better when he's got her history,

treatment, test results, and symptoms figured out. Thank-you for the

heads up on what to expect.

I think that the prognosis of what to expect really can't be given.

No one knows what the future will hold because everyone is so

different. I've read on lots of sites on google that many young

women outgrow POTS at around 25 yrs or so while some may not. I

don't know if that applies to EDS/HMSers though. Even comparing one

H-EDSer's past, present, and future to another and still its just

about impossible to predict how things will go. Some improve when

they grow older, others deteriorate, others stay the same.

Hang in there Bernie. There are a lot of Drs. who find are

overwhelmed by some patients multiple issues while other Drs. like

the different challenge. I hope this DR. works out for your dtr. in

the end! Was he able to offer any insight into her arythmias?

All the best with the geneticist appt June 1. May I ask whom you're

seeing?

Take care!

-Rhea

PS. All my results finally came in and the secretary got me an appt

in two days time today with the internist. I'm very curious to hear

about my tests results. I've never gotten an appt that quickly with

any Dr. before so that was a surprise. The geneticist I see will be

on the 26th and I requested to please have 1 appt with the internist

before than so the geneticist would have a bit of an idea as to what

is going on. I will let you know what I find out...