RE: Re: Introducing Myself, re Hypermobile EDS, OI, POTS, ADHD, LD

[Guest guest]

Bernie, I found these emails from on the EDSers list. You may want to

take a look at the websites she lists. Hope it helps. Oh, by the way, I

talked to her tonight. She's still in Hawaii, and she said to say Aloha to

everyone! :-) Lucky ducky!

Love Lana

Bonnie really posted a very, very good link from the NDRF site, but I am

happy

to repost some of the links I've sent before if they will be of any help. I

can't really address any of the SS/SSI issues, as I retired for EDS medical

reasons from the Texas Teacher Retirement System (we don't pay into SS, so

cannot collect from it). I have POTS, as do both my teenage sons...as well

as

other autonomic nervous system disorders which are, in our cases, secondary

to

EDS. Yes, I believe and also P. and on our CEDA list have

POTS

as well. I think I also saw where Caro was also recently diagnosed with some

form of dysautonomia as well. There may be other list members, too, who have

some form of this. Dr. Grubb (MCO in Toledo) has told me numerous times that

" your autonomic nervous system is just 'getting by' in the best of times,

and

cannot do its job at all when you are sick or traumatized. " Dr. Grubb is a

leading expert in the area of dysautonomia, and I highly recommend him, as

do

several other list members. Other manifestations of autonomic nervous system

dysfunction include (but are certainly not limited to) sleep disorders (like

Narcolepsy, etc.), IBS, interstitial cystitis (a bladder condition), and

others.

It is not just limited to POTS, Neurocardiogenic Syncope, and the like.

www.potsplace.com

http://www.med.nyu.edu/fd/fdcenter.html

http://www.ndrf.org/

http://home.att.net/~potsweb/POTS.html

http://www.ndrf.org/ParoxymalAutonomicSyncope.htm

Love,

~LoneStarRose~

(~~)

From: " ~Lonestar Rose~ " <

http://health.groups.yahoo.com/group/edsers/post?postID=kpMNqe4QWKFVI0qz7Hr

HZMJ5JJ77avLxPO53FwLmtJOCscbibrrdVDK4cBnjvOE9pyTbFdF_HFpeLRh9xo9Rc0t7E2Y8W2U

w0HwO> waltzacrosstexaswithme@h...>

Date: Sun Feb 15, 2004 7:34 pm

Subject: our Dr. Grubb visit last week

Dr. Grubb was wonderful to us, as always. I'll give you as quick a report as

I

can.

: Dr. Grubb once again interrogated his loop recorder, and although he

did see several more events which had been auto-activated, he said, " I am

not

seeing anything new here, so that is good. Even though the EP study Dr.

Gillette (Cooks Childrens in Ft. Worth) was cut short by the ventricular

fibrillation after 45 minutes, I still have the luxury of the information

(Dr. Gillette) gathered during that 45 minutes. If I didn't have that

information, I'd be more concerned about the events I always see and that

Dr.

Pearse always sees on his recorder. needs to increase his Provigil by

another 100 mg, as his body is growing. This will help him not to feel so

lethargic for no reason other than BP drops and, of course, his narcolepsy.

When I say 'no reason', I mean that he is well rested, eating well, and

fairly

sedentary. Yes, he is still having BP drops and tachycardia to compensate

for

those drops, but the medications I have him on are working to control it

pretty

well at this point. I think that we can reasonably agree to have his loop

recorder taken out now. After all, it's been in there for about 20 months,

and

there does come a point when there is an increased risk of infection. The

battery will be dying soon anyway. That procedure can be done in Dallas by

Dr.

Pearse, which will be easier for all of you than having me do it here at

MCO.

It's a big deal for anyone to have a surgical procedure done so far from

home. I

enjoyed visiting on the phone with her about , you, and Isaac. I see

no

need to consider a pacer for right now. It is too soon. I have found

that many adolescents with POTS slowly improve by their mid-twenties, and I

still want to allow to have more time to see if he is going to be one

of

those lucky ones. Of those who do sometimes get somewhat better, boys tend

to

improve slower than girls. If and when he considers entering college and the

job market, he will definitely need to limit his choices to occupations

which

will allow some flexibility of hours as well as things which are not

strenuous.

Nothing will ever change the fact that all of you have Ehlers-Danlos and

POTS.

may slowly improve, or he may, in time, progress as you have. Only

time

will tell. He is doing very well, but needs to always respect his body's

limits. " He also put on K-Dur (Rx potassium, to replace the over the

counter kind I've been giving him). We will continue his Florinef, Celexa,

and

other meds at the same dosages. Dr. Grubb also discussed with his

career

aspirations ( truly does hope to be able to become a mortician--which

is

very altruistic--I could not do it, but we all have an appt. to keep with

one.),

and shared some very interesting things with us about how Jewish people are

prepared for burial which we certainly did not know. Since Dr. Grubb is a

very

conservative Jewish man (and physician ), he said that he is one of those

who

sometimes is called upon to help with this. I sincerely thanked him for

teaching us something.

Me: Dr. Grubb was not as optimistic about my prognosis. I described to him

the

increased frequency of syncope and presyncope I'd been experiencing since

last

fall, and told him that I've been battling a sinus infection and flu for

literally months now, just generally feeling bad. I told him that there was

a

point last fall when I literally felt like I was dying I felt so bad. He

quietly said, " well, that is what dying feels like....you just sink, whether

it's fast or slow. " I also told him that I had begun to have some syncope

which

had absolutely no warning, and which resulted in two mild concussions and

two

ambulance rides to the local hospital. I told him about my potassium level

recently dropping as low as 2.9, and that Dr. Heller has put me on Rx liquid

potassium. I further shared with him (as well as sharing with him many of

's medical records since his last MCO visit) all of my medical records

including physicians' progress notes, etc. from every dr. I've seen. I

shared

with him what Dr. Heffez and my Dallas ortho, Dr. Callewart, say about my

spinal

cord impingement and congenital narrowing of my spinal column and the

possible

surgical intervention. Dr. Grubb was very concerned about this, and said, " I

want to see you have your spinal cord decompressed sooner rather than later.

The longer you wait, the greater the risk of your cord being permanently

damaged. It probably makes little difference in the long run whether you

have a

posterior laminectomy or an anterior fusion. The end result will still be

good,

and you cannot avoid this issue. Don't wait too long, really. Wear the

cervical collar all the time until you have this taken care of, no matter

who

looks at you and asks dumb questions. Tell them it's an old war wound. Since

you have several opinions and options before you to consider in getting this

done (Dr. Heffez in Chicago or Dr. Callewart in Dallas), take into

consideration

how difficult it might be to have a major surgery done far from your home.

You

will probably be hospitalized for at least a week, and flat of your back for

quite awhile. It will also be a major ordeal to travel for follow up care.

However, you won't really go wrong no matter which of these doctors you

choose

to proceed with. They are both very reasonable men. I know Dan (Dr. Heffez),

and of course, Craig Callewart has actually been inside your neck before

when he

did your first fusion. He did a good job with that, and knows your medical

history. In view of this issue, your increased syncope, and the marked

decrease

in the density of your bones...particularly your hips...I'd really like you

to

consider using your wheelchair more of the time, and certainly using your

cane

or walker even inside your house for stability. Continue the liquid

potassium,

and have the level checked at least once a month. I'm going to increase your

Provigil from 50mg to 100mg, and let me know if this helps any with your

energy

level. You are passing out more because you are slowly getting

sicker.....your

Ehlers-Danlos is just wreaking havoc with your autonomic nervous system,

which

is just getting by as it is. Your body just can't keep up with all you want

to

do. Try to choose activities and trips which really mean the most to you,

and

don't over extend. Try to avoid traveling to places that are icy because of

your

risk of falling and fracturing something. That is very easy for you to do.

You

push your body too hard, and it just can't keep up. Take good care of

yourself

and rest when you need to. You must live well in order to live long. Don't

do

things that can wait or that others can help you with. I know that you have

grieved at the loss of your teaching career, but working is not something

you

can do again. Go to counseling if you feel you need to in order to help you

accept your own limitations. It is very hard to be chronically ill. You are

seeking out and getting excellent medical care from a variety of specialists

for

each illness your EDS is causing, and that is all anyone could possibly do

in

your position. Take your Proamitine in between your Florinef more often. I

suspect you are not taking it when you feel weak and like you're going to

faint.

(He's right, I haven't been). " Dr. Grubb also told me that he would strongly

recommend that any surgery which I have in the future should be done with

the

anesthesiologist NOT using the " routine procedure of 'slam-dunk' " , but

instead

to treat me the same as any person with a diseased heart (though mine is

technically not diseased) and " take you down by stages...and have various

life

saving drugs laid out on the tray that they don't routinely lay

out...because

your autonomic nervous system just can't respond like other people's. I'll

put

that in my progress notes. "

As always, Dr. Grubb was infinitely kind, compassionate, and patient. He

spent

nearly 3 hours with us, and never acted like he was in a hurry. In between

discussing our health issues and meds, he also made pleasant conversation

about

other topics, and even shared with us that his sister-in-law is stricken

with

muscular dystrophy and his brother has taken her all over the country in

search

of the latest treatments...but she worsens despite all efforts. He even told

us

that he told his brother, " Barry, no matter what you are saying to me, you

are

NOT ok....you need counseling to help you cope with this and to help

yourself

help her. " I promised to remember them in my prayers, and that kind

physician

thanked me. I gave him greetings from my wonderful friends Gopp,

Price, and Leilani Bautista-Keene, and he smiled with modest pleasure. As

always, I was greatly blessed and humbled to be in Blair Grubb's presence.

Love,

~LoneStarRose~

(~~)

[Guest guest]

Bernie, I found these emails from on the EDSers list. You may want to

take a look at the websites she lists. Hope it helps. Oh, by the way, I

talked to her tonight. She's still in Hawaii, and she said to say Aloha to

everyone! :-) Lucky ducky!

Love Lana

Bonnie really posted a very, very good link from the NDRF site, but I am

happy

to repost some of the links I've sent before if they will be of any help. I

can't really address any of the SS/SSI issues, as I retired for EDS medical

reasons from the Texas Teacher Retirement System (we don't pay into SS, so

cannot collect from it). I have POTS, as do both my teenage sons...as well

as

other autonomic nervous system disorders which are, in our cases, secondary

to

EDS. Yes, I believe and also P. and on our CEDA list have

POTS

as well. I think I also saw where Caro was also recently diagnosed with some

form of dysautonomia as well. There may be other list members, too, who have

some form of this. Dr. Grubb (MCO in Toledo) has told me numerous times that

" your autonomic nervous system is just 'getting by' in the best of times,

and

cannot do its job at all when you are sick or traumatized. " Dr. Grubb is a

leading expert in the area of dysautonomia, and I highly recommend him, as

do

several other list members. Other manifestations of autonomic nervous system

dysfunction include (but are certainly not limited to) sleep disorders (like

Narcolepsy, etc.), IBS, interstitial cystitis (a bladder condition), and

others.

It is not just limited to POTS, Neurocardiogenic Syncope, and the like.

www.potsplace.com

http://www.med.nyu.edu/fd/fdcenter.html

http://www.ndrf.org/

http://home.att.net/~potsweb/POTS.html

http://www.ndrf.org/ParoxymalAutonomicSyncope.htm

Love,

~LoneStarRose~

(~~)

From: " ~Lonestar Rose~ " <

http://health.groups.yahoo.com/group/edsers/post?postID=kpMNqe4QWKFVI0qz7Hr

HZMJ5JJ77avLxPO53FwLmtJOCscbibrrdVDK4cBnjvOE9pyTbFdF_HFpeLRh9xo9Rc0t7E2Y8W2U

w0HwO> waltzacrosstexaswithme@h...>

Date: Sun Feb 15, 2004 7:34 pm

Subject: our Dr. Grubb visit last week

Dr. Grubb was wonderful to us, as always. I'll give you as quick a report as

I

can.

: Dr. Grubb once again interrogated his loop recorder, and although he

did see several more events which had been auto-activated, he said, " I am

not

seeing anything new here, so that is good. Even though the EP study Dr.

Gillette (Cooks Childrens in Ft. Worth) was cut short by the ventricular

fibrillation after 45 minutes, I still have the luxury of the information

(Dr. Gillette) gathered during that 45 minutes. If I didn't have that

information, I'd be more concerned about the events I always see and that

Dr.

Pearse always sees on his recorder. needs to increase his Provigil by

another 100 mg, as his body is growing. This will help him not to feel so

lethargic for no reason other than BP drops and, of course, his narcolepsy.

When I say 'no reason', I mean that he is well rested, eating well, and

fairly

sedentary. Yes, he is still having BP drops and tachycardia to compensate

for

those drops, but the medications I have him on are working to control it

pretty

well at this point. I think that we can reasonably agree to have his loop

recorder taken out now. After all, it's been in there for about 20 months,

and

there does come a point when there is an increased risk of infection. The

battery will be dying soon anyway. That procedure can be done in Dallas by

Dr.

Pearse, which will be easier for all of you than having me do it here at

MCO.

It's a big deal for anyone to have a surgical procedure done so far from

home. I

enjoyed visiting on the phone with her about , you, and Isaac. I see

no

need to consider a pacer for right now. It is too soon. I have found

that many adolescents with POTS slowly improve by their mid-twenties, and I

still want to allow to have more time to see if he is going to be one

of

those lucky ones. Of those who do sometimes get somewhat better, boys tend

to

improve slower than girls. If and when he considers entering college and the

job market, he will definitely need to limit his choices to occupations

which

will allow some flexibility of hours as well as things which are not

strenuous.

Nothing will ever change the fact that all of you have Ehlers-Danlos and

POTS.

may slowly improve, or he may, in time, progress as you have. Only

time

will tell. He is doing very well, but needs to always respect his body's

limits. " He also put on K-Dur (Rx potassium, to replace the over the

counter kind I've been giving him). We will continue his Florinef, Celexa,

and

other meds at the same dosages. Dr. Grubb also discussed with his

career

aspirations ( truly does hope to be able to become a mortician--which

is

very altruistic--I could not do it, but we all have an appt. to keep with

one.),

and shared some very interesting things with us about how Jewish people are

prepared for burial which we certainly did not know. Since Dr. Grubb is a

very

conservative Jewish man (and physician ), he said that he is one of those

who

sometimes is called upon to help with this. I sincerely thanked him for

teaching us something.

Me: Dr. Grubb was not as optimistic about my prognosis. I described to him

the

increased frequency of syncope and presyncope I'd been experiencing since

last

fall, and told him that I've been battling a sinus infection and flu for

literally months now, just generally feeling bad. I told him that there was

a

point last fall when I literally felt like I was dying I felt so bad. He

quietly said, " well, that is what dying feels like....you just sink, whether

it's fast or slow. " I also told him that I had begun to have some syncope

which

had absolutely no warning, and which resulted in two mild concussions and

two

ambulance rides to the local hospital. I told him about my potassium level

recently dropping as low as 2.9, and that Dr. Heller has put me on Rx liquid

potassium. I further shared with him (as well as sharing with him many of

's medical records since his last MCO visit) all of my medical records

including physicians' progress notes, etc. from every dr. I've seen. I

shared

with him what Dr. Heffez and my Dallas ortho, Dr. Callewart, say about my

spinal

cord impingement and congenital narrowing of my spinal column and the

possible

surgical intervention. Dr. Grubb was very concerned about this, and said, " I

want to see you have your spinal cord decompressed sooner rather than later.

The longer you wait, the greater the risk of your cord being permanently

damaged. It probably makes little difference in the long run whether you

have a

posterior laminectomy or an anterior fusion. The end result will still be

good,

and you cannot avoid this issue. Don't wait too long, really. Wear the

cervical collar all the time until you have this taken care of, no matter

who

looks at you and asks dumb questions. Tell them it's an old war wound. Since

you have several opinions and options before you to consider in getting this

done (Dr. Heffez in Chicago or Dr. Callewart in Dallas), take into

consideration

how difficult it might be to have a major surgery done far from your home.

You

will probably be hospitalized for at least a week, and flat of your back for

quite awhile. It will also be a major ordeal to travel for follow up care.

However, you won't really go wrong no matter which of these doctors you

choose

to proceed with. They are both very reasonable men. I know Dan (Dr. Heffez),

and of course, Craig Callewart has actually been inside your neck before

when he

did your first fusion. He did a good job with that, and knows your medical

history. In view of this issue, your increased syncope, and the marked

decrease

in the density of your bones...particularly your hips...I'd really like you

to

consider using your wheelchair more of the time, and certainly using your

cane

or walker even inside your house for stability. Continue the liquid

potassium,

and have the level checked at least once a month. I'm going to increase your

Provigil from 50mg to 100mg, and let me know if this helps any with your

energy

level. You are passing out more because you are slowly getting

sicker.....your

Ehlers-Danlos is just wreaking havoc with your autonomic nervous system,

which

is just getting by as it is. Your body just can't keep up with all you want

to

do. Try to choose activities and trips which really mean the most to you,

and

don't over extend. Try to avoid traveling to places that are icy because of

your

risk of falling and fracturing something. That is very easy for you to do.

You

push your body too hard, and it just can't keep up. Take good care of

yourself

and rest when you need to. You must live well in order to live long. Don't

do

things that can wait or that others can help you with. I know that you have

grieved at the loss of your teaching career, but working is not something

you

can do again. Go to counseling if you feel you need to in order to help you

accept your own limitations. It is very hard to be chronically ill. You are

seeking out and getting excellent medical care from a variety of specialists

for

each illness your EDS is causing, and that is all anyone could possibly do

in

your position. Take your Proamitine in between your Florinef more often. I

suspect you are not taking it when you feel weak and like you're going to

faint.

(He's right, I haven't been). " Dr. Grubb also told me that he would strongly

recommend that any surgery which I have in the future should be done with

the

anesthesiologist NOT using the " routine procedure of 'slam-dunk' " , but

instead

to treat me the same as any person with a diseased heart (though mine is

technically not diseased) and " take you down by stages...and have various

life

saving drugs laid out on the tray that they don't routinely lay

out...because

your autonomic nervous system just can't respond like other people's. I'll

put

that in my progress notes. "

As always, Dr. Grubb was infinitely kind, compassionate, and patient. He

spent

nearly 3 hours with us, and never acted like he was in a hurry. In between

discussing our health issues and meds, he also made pleasant conversation

about

other topics, and even shared with us that his sister-in-law is stricken

with

muscular dystrophy and his brother has taken her all over the country in

search

of the latest treatments...but she worsens despite all efforts. He even told

us

that he told his brother, " Barry, no matter what you are saying to me, you

are

NOT ok....you need counseling to help you cope with this and to help

yourself

help her. " I promised to remember them in my prayers, and that kind

physician

thanked me. I gave him greetings from my wonderful friends Gopp,

Price, and Leilani Bautista-Keene, and he smiled with modest pleasure. As

always, I was greatly blessed and humbled to be in Blair Grubb's presence.

Love,

~LoneStarRose~

(~~)