Re: comments for a few, advocacy, dr gropman, apology, etc

[Guest guest]

--- You do not have to apologize for your long post. We need to vent

and it feels so good to type things out. I was really thinking about

you after I read it. It was a bit overwhelming to read. I have a

problem with attention and memory. It amkes it hard to keep up with

the posts here. So your post with no separation with paragraphs was

mindboggling. I wanted to respond, but I was having a hard time

remembering what I had read and I could not skim back over it.

I am sorry you are have such a bad crash. Autonomic symptoms can be

so disabling. I hope you can find some ansers and feel better soon.

I am the one who sould like to see DR Gropman. I have an internist

who is very good and I have neurologists here. I do not need her

foor matenaince. I just need another professional opinion. Someone

who can help with the diagnosis. I am thinking of sending my records

to Dr Schoffner in Atlanta for a fresh biopsy.

Take care, Dawn A

In , moonchild62579@a... wrote:

> hi guys,

> I just wanted to appologize kinda (though I know thats what this

group is here for) for such a long post- i just read it and boy, it

was way way too long, my last one! I was way too sleep deprived (got

like 6 hrs of sleep in the last week until last night) and

dehydrated and this crash, my OCD got alot worse and i get into this

all or nothing state of mind where i have to be so detailed about

everything. my mom said that i was writing loads and loads of to do

lists each day that made little sense sometimes and questions for my

drs, etc. i even emailed a long email to this dr who another dr

recommended to me- a neuro that is supposed to be good for mito in

my area. if i had any change in seeing her, geez, who knows now lol.

im just sorry i wish i could of just given yall less to read. its

just been a hectic month with a crash of the seizures and

dysautonomia/dehydration mainly. I'm so glad to be getting the PICC

line put in tomorrow and then the broviac in a few wks for fluids

and probably carnitor and some meds too. They are also putting in

what is called a loop monitor which is to see if any of my seizures

are due to cardiac arrythmias, or something with the dysautonomia. I

finally got 20 hrs of sleep last night!

> Anyways, i just skimmed through some of the posts and i hate to

see that so many others are dealing with similar issues with drs,

family, etc. we do need more family and medical related advocacy-

its too researched based and yes, we do need that but we need all of

it and it needs to be more equalized i think. I just feel like i

finally realize how some people feel like in crashes, i used to feel

like i was doing badly before, now i wish i could only go back to

that. i wish everyone in the hospital or in crashes or those not

getting the med help they could, could get more help- i wish i had

the strength to advocate more. maybe someday soon i will since i do

have some better drs and some better treatment coming it seems. just

know that you all are in my prayers and thoughts daily. also-

someone mentioned dr gropman- i see her and she is a good dr, but im

not sure if she is worth going to if you are going to travel a long

way, i see her only because shes 20 miles away from me. she only

wants to see me every 6 months and she did put me on the cocktail

and she did find me drs at the hospital she works at that she knew

of but she expected me to find some others that she couldnt find,

she does work with them some but her case load now is pretty high

and she does want me to have an internist now to help her it seems,

if you want to know more, id be glad to talk about it, she has

helped me alot though and id be lost w/o her. anyways, im exausted

and got to do a few more things before tomorrow- and this is getting

long again but did have to make a few comments about some posts etc.

take care everyone, at least we do have each other!

> Adrienne

[Guest guest]

Have you had your blood ammonia level checked? I have some confusion

episodes, and they think it is because my ammonia level is high

sometimes (tested above 100 last time). It's *so* hard to tell when

one is in a state like that, until you're out of it.

Take care,

RH

> hi guys,

> I just wanted to appologize kinda (though I know thats what this

group is here for) for such a long post- i just read it and boy, it

was way way too long, my last one! I was way too sleep deprived (got

like 6 hrs of sleep in the last week until last night) and dehydrated

and this crash, my OCD got alot worse and i get into this all or

nothing state of mind where i have to be so detailed about

everything. my mom said that i was writing loads and loads of to do

lists each day that made little sense sometimes and questions for my

drs, etc. i even emailed a long email to this dr who another dr

recommended to me- a neuro that is supposed to be good for mito in my

area. if i had any change in seeing her, geez, who knows now lol. im

just sorry i wish i could of just given yall less to read. its just

been a hectic month with a crash of the seizures and

dysautonomia/dehydration mainly. I'm so glad to be getting the PICC

line put in tomorrow and then the broviac in a few wks for fluids and

probably carnitor and some meds too. They are also putting in what is

called a loop monitor which is to see if any of my seizures are due

to cardiac arrythmias, or something with the dysautonomia. I finally

got 20 hrs of sleep last night!

> Anyways, i just skimmed through some of the posts and i hate to see

that so many others are dealing with similar issues with drs, family,

etc. we do need more family and medical related advocacy- its too

researched based and yes, we do need that but we need all of it and

it needs to be more equalized i think. I just feel like i finally

realize how some people feel like in crashes, i used to feel like i

was doing badly before, now i wish i could only go back to that. i

wish everyone in the hospital or in crashes or those not getting the

med help they could, could get more help- i wish i had the strength

to advocate more. maybe someday soon i will since i do have some

better drs and some better treatment coming it seems. just know that

you all are in my prayers and thoughts daily. also- someone mentioned

dr gropman- i see her and she is a good dr, but im not sure if she is

worth going to if you are going to travel a long way, i see her only

because shes 20 miles away from me. she only wants to see me every 6

months and she did put me on the cocktail and she did find me drs at

the hospital she works at that she knew of but she expected me to

find some others that she couldnt find, she does work with them some

but her case load now is pretty high and she does want me to have an

internist now to help her it seems, if you want to know more, id be

glad to talk about it, she has helped me alot though and id be lost

w/o her. anyways, im exausted and got to do a few more things before

tomorrow- and this is getting long again but did have to make a few

comments about some posts etc. take care everyone, at least we do

have each other!

> Adrienne