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home from the hospital...

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hi everyone...

I wanted to update you all.

I did go see my doctor on thursday, and when I went my BP and HR were prettty high, and my blackouts where different then they have been before, so she admitted me to the hospital.

they did a bunch of test, my EKG showed and high and irregular heart beat (they caled it an arrythmia), and the EEG showed that my brain functioning is slowing down, and they have no idea why... they said that since the MRI came back ok, meaning that there were no tumors or anything.. that they werent going to check into it any furture. I think that that is kinda messed up.. I dont think that that is too normal do you??

And my labs came back and showed my my liver is not functioning as it should. and that my WBC count was high, but again they dont know why these thing are happening.

I am alitle upset with the level of care that I got, i was dealing with a whole bunch of doctors that did not really have much knowledge in ANS/POTS problems, and the primary doc treating me did not even know what pots was. I had to explain it to her. Pretty darn pathedic.

ANyways I asked the doctors and the nurses several times to please call my cardio doc, that I think that he would be able to help and shed some light onto what is happening, and after all he knows me well and has been treating me for ANS/POTS.. and after all he is a spacialist in the field.. You know that they flat out refused to call him ... they said well if we cant do anything for you, then he cant do anything for you.

I do think taht they were wrong.

All and all, in the end they told me that they had no answers for, and that didnt know why this was happening to me, and that they have nothing to offer me.. and you know what the neuro doc said to me before I left, to call my pitts, doc and see dr. grubb, that they probably would be able to help, and offer me some treatment that might help me.

I'm like oh my god!!! why didnt you just call one of them like I asked you too!



SO I have something going on, that nobody seems to be able to figure out or help me with. I now remember why i started gong to docs outside of Erie, the treatment is SOOOO much better!

So needless to say that i am alittle scared,and afraid that this "weird stuff" is going to happen again.

I blacked out while I was in the hospital.. not cool, but i guess the best place to do it though!!! I was there 4 days, and they really didnt do much for me, I dont think that they knew what to do... but they did however, give me contiuos sodium IV fluids, that helped alittle, I do feel alittle bit better then i felt thurdsay, so that is good.

Ok well I justed wnated to pop in... I hope that you all are doing allright.


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Hi Linda,

I'm glad you went to see your doctor, but I'm sad about the treatment they gave you in hospital. It wouldn't have done them harm to call your cardio, would it. As my cardio would say: they're not blessed with too much knowlegde!

I wish doctors at least admit it and go search for answers!!!! When they know who/where to turn to, I wish they would do that and help us out!!!

I hope you will be some better soon Linda, and that you will get answers about what's going on.

Best wishes and take care,


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Hi Linda,

I am sorry for your horrible experience. I can certainly relate to what happened to you. I had a similar experience to yours this week. You can read about it if you feel like it. It's called "IVs".

Do you have an appointment with Dr Grubb soon?

I just can't wait for the medical community to understand our disorder and treat us well.


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thank you guys for yu support it means alot!

Ernie, I go to see Dr. Grubb in August, and I am scheduled to see my regular neurologist at the end of next weeek, in pittsburgh, am I also going to get into to see my regular cardio dco too.

I actually am looking forward to seeing Dr.grubb, I believe that if he has some ideas about my treatment, that he will do anything that he can to help, as well as my pittsburgh doctor. they are all great.

as for the Iv treatment, I believe that it does indeed help, that is one of the things that I am going to talk to the doc about, getting IV's done at home..

I too, hope that I get to feeling better soon... thanks again for the support!


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Im so sorry about your hospital experience. It makes me upset when Dr's won't do their own research in order to help us! On top of that they could at least call someone if they aren't willing to help!

Hang in here. I hope that Dr. Grubb and your other Dr's can give you some help.


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hi linda -

i'm glad you went to the doctor but so sorry that your hospital experience was so crummy. i too have had many hospital stays that have accomplished nothing other than frustration & some pumping up (IVs). i continue to be baffled by doctors' seeming "inability" to call other docs that actually know what might be going on with me...even when in the same hospital system.

i'm glad that you're at least feeling a bit better than when you went in & hope you get some more answers & support soon. it's tough & a never-ending battle but IS possible...

hang in there,


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I'm so sorry about the way you have been feeling and being treated. All we want *sigh* is for someone to understand and try to help us. I avoid the ER at all costs. I know you had no choice and so sad that they did not pay attention to your request to call your doc. Bedside manner is not taught in med school anymore, I think. Get em in get em out seems to be the way. :)

Hope you get some answers soon.

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Guest tearose

I too am sorry to hear about the bad experience.

Like others before me have said, don't let this take you down!

It is going to be a blip on the screen someday..unfortunately. But hopefully you will have many better times around the corner!

If you are ready to get more answers than keep asking tough questions until you find the doctor who will help!!

It can take years to find a "keeper" doctor but you can find some and/or educate some to be able to help you in the meantime.

I think when I finally was "documented" at both Mayo Clinic and Columbia Presbyterian, any future doctors treated me with more respect.

Welcome home and do take care, tearose

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