appt with dr gropman, liquid supplements, VA/MD support group etc

[Guest guest]

Hi guys,

Well, I was dr gropman thurs and was even happier with her than i was my

first appt with her back in oct. I think that now she knows i have definite

mito,

thats shes willing to work with me more. She is willing to get me a team of

drs together, thank goodness I've been wanting this for so long! She is sending

me to town's physical med and rehabilitation dept in hopes to get me

some help with various things inlcuding my mobility and fatigue probs (probably

a

scooter or electric WC- though with Laurie's recent 'fun' with hers and her

van- bless your heart laurie, youve had it rough lately! anyways, im worried

bout that happening with me if i get one), she also said they will help with

other ways to accomidate my needs, along with seeing a speech pathologist to

help

with swallowing issues, a PT and someone to help with pain management (she

wants me to lessen my use of narcotics due to my GI dysmotility- so do I!) Even

though i have an appt this week for a possible hearing aid with my local

audilogist and ENT, she said they might help with that too. Then she also wants

me

to see a pulmonologist she's recommending for more pulmo tests and sleep study

to check if I will actually benefit with a CPAP or something similar. She's

also having me see a cardio and gastro and an epilepsy and headache specialist.

Geez, I feel like I'm gonna be so busy with all these appts but she feels

that i need to have all my drs in one place or most of them and so do i. She

also

is having me see a genetic eye disease dr to see what the exact cause of my

double vision is. Then, she added some supplements to the carnitor, Coq10 and

riboflavin- shes adding a-lipoic acid, thiamine and something else cant

remember. And she works with this pharmacy that will compound them all together

and

into a liquid- another thing ive been looking for. I'm gonna get the info on

this pharmacy because I think some of yall would benefit from it too- they do

mail orders. Anyways- there is also this internist that she wants me to see, but

hes 2-3 hrs away in northern maryland. She says he has several mito patients

and wants more- he is really interested in genetic disorders- also ehler

danlos which i know some of yall have in your family. So if anyone is

interested

in him- id be glad to give more info. he also did a fellowship in genetics. One

more thing- there is a support group in Charlottesville VA next weekend and

Dr. gropman is presenting at it, if anyone in the area is interested, id be

happy to give more info on that too, I know someone here lives in roanoke I

think. Would be nice to meet a few from here, though I know I'm gonna meet quite

a

few in august! thats coming up sooo soon! Anyways- ive tried to keep up with

posts but just deleted alot- i had a bad week last week with alot of seizures

and long postictal period, still recooping but at least i havent had a seizure

since thur night. I know alot of others are having a rough time too- yall are

in my thoughts!

take care,

Adrienne

[Guest guest]

Adrienne

I am so glad you now have someone who is getting things going with other

specialists. It does seem like the appointments come in clumps, but I know I

feel better because of their help.

As far as a wheelchair or scooter, the rehab people will know what will best

meet your needs. For me, the scooter was easier to drive, but the chair is

much more comfortable. Once the kinks are out of the system in the van and

chair, I know they will work well.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Sun, 13 Jun 2004 09:49:28 EDT

> To:

> Subject: appt with dr gropman, liquid supplements, VA/MD support

> group etc

>

> Hi guys,

> Well, I was dr gropman thurs and was even happier with her than i was my

> first appt with her back in oct. I think that now she knows i have definite

> mito,

> thats shes willing to work with me more. She is willing to get me a team of

> drs together, thank goodness I've been wanting this for so long! She is

> sending

> me to town's physical med and rehabilitation dept in hopes to get me

> some help with various things inlcuding my mobility and fatigue probs

> (probably a

> scooter or electric WC- though with Laurie's recent 'fun' with hers and her

> van- bless your heart laurie, youve had it rough lately! anyways, im worried

> bout that happening with me if i get one), she also said they will help with

> other ways to accomidate my needs, along with seeing a speech pathologist to

> help

> with swallowing issues, a PT and someone to help with pain management (she

> wants me to lessen my use of narcotics due to my GI dysmotility- so do I!)

> Even

> though i have an appt this week for a possible hearing aid with my local

> audilogist and ENT, she said they might help with that too. Then she also

> wants me

> to see a pulmonologist she's recommending for more pulmo tests and sleep study

> to check if I will actually benefit with a CPAP or something similar. She's

> also having me see a cardio and gastro and an epilepsy and headache

> specialist.

> Geez, I feel like I'm gonna be so busy with all these appts but she feels

> that i need to have all my drs in one place or most of them and so do i. She

> also

> is having me see a genetic eye disease dr to see what the exact cause of my

> double vision is. Then, she added some supplements to the carnitor, Coq10 and

> riboflavin- shes adding a-lipoic acid, thiamine and something else cant

> remember. And she works with this pharmacy that will compound them all

> together and

> into a liquid- another thing ive been looking for. I'm gonna get the info on

> this pharmacy because I think some of yall would benefit from it too- they do

> mail orders. Anyways- there is also this internist that she wants me to see,

> but

> hes 2-3 hrs away in northern maryland. She says he has several mito patients

> and wants more- he is really interested in genetic disorders- also ehler

> danlos which i know some of yall have in your family. So if anyone is

> interested

> in him- id be glad to give more info. he also did a fellowship in genetics.

> One

> more thing- there is a support group in Charlottesville VA next weekend and

> Dr. gropman is presenting at it, if anyone in the area is interested, id be

> happy to give more info on that too, I know someone here lives in roanoke I

> think. Would be nice to meet a few from here, though I know I'm gonna meet

> quite a

> few in august! thats coming up sooo soon! Anyways- ive tried to keep up with

> posts but just deleted alot- i had a bad week last week with alot of seizures

> and long postictal period, still recooping but at least i havent had a seizure

> since thur night. I know alot of others are having a rough time too- yall are

> in my thoughts!

> take care,

> Adrienne

>

>

>

[Guest guest]

Adrienne,

I am so glad you are happy with Dr. Gropman and that things are

being done for you. You have had to wait a long time for this. As for a

scooter or wheelchair, the therapists will help you decide what is best.

I find the power chair easier for me (I had a scooter when I was in

college). Everyone is different. Good luck with all your upcoming

appointments. I am so excited for you that you are getting the help you

deserve and need.

Smiles,

a

On Sun, 13 Jun 2004 09:49:28 EDT moonchild62579@... writes:

Hi guys,

Well, I was dr gropman thurs and was even happier with her than i was my

first appt with her back in oct. I think that now she knows i have

definite mito,

thats shes willing to work with me more. She is willing to get me a team

of

drs together, thank goodness I've been wanting this for so long! She is

sending

me to town's physical med and rehabilitation dept in hopes to get

me

some help with various things inlcuding my mobility and fatigue probs

(probably a

scooter or electric WC- though with Laurie's recent 'fun' with hers and

her

van- bless your heart laurie, youve had it rough lately! anyways, im

worried

bout that happening with me if i get one), she also said they will help

with

other ways to accomidate my needs, along with seeing a speech pathologist

to help

with swallowing issues, a PT and someone to help with pain management

(she

wants me to lessen my use of narcotics due to my GI dysmotility- so do

I!) Even

though i have an appt this week for a possible hearing aid with my local

audilogist and ENT, she said they might help with that too. Then she also

wants me

to see a pulmonologist she's recommending for more pulmo tests and sleep

study

to check if I will actually benefit with a CPAP or something similar.

She's

also having me see a cardio and gastro and an epilepsy and headache

specialist.

Geez, I feel like I'm gonna be so busy with all these appts but she feels

that i need to have all my drs in one place or most of them and so do i.

She also

is having me see a genetic eye disease dr to see what the exact cause of

my

double vision is. Then, she added some supplements to the carnitor, Coq10

and

riboflavin- shes adding a-lipoic acid, thiamine and something else cant

remember. And she works with this pharmacy that will compound them all

together and

into a liquid- another thing ive been looking for. I'm gonna get the info

on

this pharmacy because I think some of yall would benefit from it too-

they do

mail orders. Anyways- there is also this internist that she wants me to

see, but

hes 2-3 hrs away in northern maryland. She says he has several mito

patients

and wants more- he is really interested in genetic disorders- also ehler

danlos which i know some of yall have in your family. So if anyone is

interested

in him- id be glad to give more info. he also did a fellowship in

genetics. One

more thing- there is a support group in Charlottesville VA next weekend

and

Dr. gropman is presenting at it, if anyone in the area is interested, id

be

happy to give more info on that too, I know someone here lives in roanoke

I

think. Would be nice to meet a few from here, though I know I'm gonna

meet quite a

few in august! thats coming up sooo soon! Anyways- ive tried to keep up

with

posts but just deleted alot- i had a bad week last week with alot of

seizures

and long postictal period, still recooping but at least i havent had a

seizure

since thur night. I know alot of others are having a rough time too- yall

are

in my thoughts!

take care,

Adrienne