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

[Guest guest]

Yes, RH

When I get really what i call " plain stupid " it is hard to even know

that I am not right. I just have a drive to function, to try to appear

normal, , and get myself to a safe place. Later I think back, and

realize how out of it I was. Sure would be nice to know what causes

the sudden onset of that stuff. For me I think it might be plain body

fatigue and heat, although the spells also occur more an hour or two

after eating. Hard to see clear patterns though.

Can we do anything to try to reduce the ammonia levels? Fluids?

Certain foods - like alkylyde (too lazy to use spell check!) or

acidic? I read somewhere that exercise helps clear the blood of lactic

acid - don't know about ammonia. Interesting.

Thanks, RH

Sunny

> 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

>

>

>

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