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Home from a week of testing...

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Hi all!!! Hope that you are all feeling atleast half way human!

Well I just got back this afternoon, from pittsburgh, I have been there all week, seeing docs, and getting alot of testing done.

Well I will start with my MRI results. I had an MRi done on wednesday, and they said that the brain its self looks good, but that they "saw" something on my pituitary gland, and that they could only get a look at it from one angel, so they are "uncertain" of what it is. And will have to repeat the MRI, and see if they can get a better look at and try and figure out what it is.

I also saw my cardio doc, he spoke with Dr.GRubb, and they increased my dose of propranolol, and changed the timing that i take the medication.. in hopes that they find the right dosage comb, and the best time of day for me to take my meds.

I had a QSART test done also, and the neuro, doc said that i definatley have autonomic problems... they told me that my BP dropped when they stood me up, and it took over 2 minutes for my body to adjust to the change in pressure and HR.

I talked to the doc about what happened to me a fews weeks ago with the twitching and difficulty with speech, and she told me, with the number of times that i blacked out, that my BP was more then likely to low, and that my body went into convulsions, that that was how it was dealing with the constant low bp, and lack of oxygen to the brain, and all that jazz. they repeated the EEg yesterday, to see if maybe my brain functioning has returned to normal, or if it is about the same.. the EEG that I had done in 2003 showed slowed brain functioning, and then the one I had done 2 weeks ago, showed the same thing, so it will be interesting to see what this one shows. I should get the results sometime this week.

I had a tilt table test done friday, I freakin' hate those things, they make you feel so crummy... my Hr went up high aout 160.. i did not pass out though, thank god!

I went back to my room, and slept till the next morning..

I was wondering, they could not get an IV access, it took the 7 trys and 5 different people, before they finally got an IV into me, and they ended up getting it along side my thumb of all places... and on wednesday, it took them over a 1/2 an hour to get an iV, they put that one just under the palm of my hand in my wrist, Boy oh BOY! did that hurt!!!!!

Do you guys have finacky veins too?

Well they are sort of peicing together what is going on with me, we should hopefully have some more answers in the up coming week.

Since, I am allready on, I had a horrible day today.. I woke up about 6 am this morning with really bad tummy pain.. then diarrhea.. and oh my god the nausea was SOOOOOOOOOOOOOOO horrific! i started throwing up this morning, it was horrible, the force of the vomitting is just so intense...I had to leave the hotel at 7;30 this morning, and i saw so sick, I didnt think that Iwould make it home... I had a 3 1/2 hours bus trip ahead of me.. plus waiting time at the bus station.... :rolleyes: I was so yucky and potsy feeling today...YUCK!

the bus ride home was not cool to say the least..I needed to lay down in a bad way.. I recined the seat back as far as it would go.. but that is not far... pulled into the bus station and that was allshe wrote folks!

It si almost 10pm and the tummy pain, nausea, diarrhea, and throwing up is just now starting to calm down..

I get like this every so often on the average of 3-4 times a month with bad spells like today.. the nausea is a daily thing.. and the diarrhea that is pretty often too.. I am curious what do you guys do to help feel better??? any suggestiond would be greatly appreciated.

I tried the ginger ale..i couldtn keep it down.. I was so thirsty.. I couldnt even drink water...

I came home and slept...

Somethimes I feel like i am never going to feel normal again! I really hate how this potsis efeting my life...


thanks for listening!!!!!!!!!!


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Hi Linda,

It seems that you have an intensive investigation and good explanation. Thanks for sharing your experience. Which hospital did you go to and which doctor did you see?

I hope that they can find a good treatment plan so that you can have your life back.

Good night


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i'm feeling about three-quarters human at the moment, which would be improved if sleep were anywhere to be found after two useless hours in bed. thanks for asking! :lol:

it does sound like you had a productive, if exhausting, visit. and it's always great when docs communicate/collaborate with one another. isn't it a shame that this isn't the norm?

sorry that the MRI kind of has you hanging. i can't stand the waiting game, especially when there leading issues/questions, but at least there's a game plan to follow up. and i can see pros in either direction....if it ends up being nothing, then you can cross it off your list...if there ends up being an issue it could lead you to a successful treatment path which is always a bonus.

and of course it would be too boring to have to wait on only one thing...i'm curious to hear of your EEG results too...

glad to hear you survived your tilt...i hate them with a passion too (my HR on my last one was almost identical to yours)...and they always leave me down for the count after...i equate them to a personal torture device :rolleyes:

i'm lucky to have good veins for the most part...the only times i've had trouble were one time when i was REALLY dehydrated awhile back & this spring a bit b/c i was having to get blood drawn &/or IVs so often that my veins were starting to rebel. the rapid weight loss at the time probably didn't help either.

i'm sorry you had such a rough day to travel on...i can't imagine how you made it through so congrats! i hope you're feeling a bit better now & will be able to rest up as much as you need now that you're back home.

in terms of nausea suggestions, nothing carbonated is ever a good thing for me. but i've been in places where i can't handle anything too. mostly i try my best to keep really on top of hydration when i can so that i can make it through the bad spells. when the bad goes on & on though i've ended up with outpatient IVs as well as had to be in the hospital on a few occassions. and i'm super slow motility-wise from top to bottom so diarrhea is rare for me.

i totally get the feeling of "i'll never be normal again" and oddly enough i'm doing my best to come to terms with it. not in a negative sense but in the way that by dealing with my reality - never losing the hope or possibility of improvement - i'm actually better able to figure out what i can do creatively in the here & now. in some ways it's defining a new "normal" for me. this is NOT easy but it's where i'm at with things these days and, on a good day, it has me in a better place than dwelling on how far from my old "normals" i am these days....my "normals" have changed a lot over the years, in both directions...

hope you're recovering from & congrats on your intense week of investigation and the accompanying travels,


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