update

[Guest guest]

hi guys,

thought I would update you all on how I was doing. I continue to have

alot of problems- neuro (seizures- though not as much lately since my

seizure meds have been upped but still not as controlled as id like,

SLEs/migraines have increased, etc), GI dysmotility is at its worse

in awhile I'm on a liquid diet right now with ensure, etc and even

having problems tolerating it (solids and semisolids made me be so

nauseous, bloated, in alot of pain/burning, etc, couldnt eat at all,

at least the liquids make the symptoms barable along with being on

meds to help- zofran etc). I'm getting both an endoscopy and

colonoscopy on the 24th and the dr is also doing the endoscopic

ultrasound to check out my pancreas and bile ducts to make sure my

symptoms are being aggravated more by pancreatitis and/or gallstones

in my bile ducts (gallbladder is gone). The prep the day before is

what im really not looking forward to, especially with swallowing

issues. This is a new GI dr so he is starting all over with tests.

I've lost about 15 lbs in the past month so if I continue we might

look into other options other than the liquid diet (G/J tube or TPN

has both been suggested depending on what is found).

I also get my PICC line out and my broviac line in on the 19th.

It is helping at least getting fluids daily, that and the florinef

has helped a good bit with some of my autonomic dysfunction (low

blood pressure and tachycardia and dizzy spells, etc). I saw Dr.

Greene thurs. one of the drs I see for mito and she wants to add IV

carnitor now but says we are gonna wait till after the broviac is

placed and see what the GI wants to add also and see what the blood

tests show that she did (she might add more things too- electrolytes,

nutrients, etc.)

I also have to get extensive dental work done tues and am going

on anesthesia for that too, then seeing my pain management dr about a

possibly pain pump because my pain is so severe now and the oral meds

i cant tolerate but IV meds dont seem to bother me as much. Also

seeing a new urologist on thursday because my urology symptoms are

getting very bad with rentention, pain and frequency (have the

diagnosises of neurogenic bladder due to mito and dysautonomia and

also interstitial cystitis and frequent UTIs). I have to find time

sometime to actually measure my urine output and fluid intake for 24

hrs (even though my fluid intake is basically IV and on basically a

liquid diet lol- but got to do that either tomorrow on monday, ugh)

I just cant wait for all of this to settle down, it never seems

to. Then I have to go to a new neurologist that my mito dr wants me

to see that she recently found out about because my old one basically

gave up on me, so that means more tests, especially since the mito dr

found new abnormalities in my neuro examination this time (she

basically said im showing more weakness on one side, more

coordination probs, ataxia, and hyperreflexia, rigity with tremors on

the other side.) I am also going to a new internist that did a

fellowship in genetics in mid december so I dont know what he will

want to do either. I'm just hoping that by the new year maybe things

will settle down some!

Anyways, it also seems my poor mom is getting more and more

mito symptoms too, I might have her join here if she can get used to

this (she doesnt know too much about the email groups, etc). She is

being tested for dysautonomia and she just seems to have alot of

those symptoms along with the exercize intolerance and muscle

symptoms, GI symptoms, fatigue, etc. I hate seeing her go through

this too. I just hope my brother never gets any more problems than he

has now (hes got extreme emotional and behavioral problems and cant

deal with much more- he has some soft physical symptoms, GI problems

and mild exercize intolerance and some other mild issues- he had more

problems as a kid and they got better so i hope it just stays that

way).

anyways, im done with my vent here guys, just needed to get

this out. I really miss being active in this group like i used to and

hope to again soon but i know you all understand and know that other

have been or some are in the same position. I do think of everyone

daily and hope that those of you not feeling well or with family

members not doing well start to do well soon and those doing better

continue to do well. I'll keep yall posted on how things go or

somehow get my mom to since I'm probably going to be exausted after

everything going on till thanksgiving, just trying to relax this

weekend. Ok, I know I'm known for these long posts, at least this one

has paragraphs, even if they arent correctly done lol. Anyways,

thinking of you all and praying.

take care,

Adrienne