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Dr. Bob is Robert Hsiung, MD,
[email protected]Shown: posts 1 to 17 of 17. This is the beginning of the thread.
Posted by floatingbridge on October 11, 2010, at 12:21:41
I cannot get out of bed and my stomach hurts.
My son is playing in the next room. I haven't made breakfast.
I don't know how to get through this. I'm hardly breathing.
I am not suicidal. I just don't see how to go on.
I am supposed to drive to Stanford and the idea of driving terrifies me. Of doctors asking me questions.
Usually I push through. I really do.
Posted by floatingbridge on October 11, 2010, at 12:31:52
In reply to it's anxiety?, posted by floatingbridge on October 11, 2010, at 12:21:41
I'm making myself go. I took extra xanax.
I'm feeding my son.
Another day. Sorry to post.
Posted by Phillipa on October 11, 2010, at 12:48:55
In reply to I've gotten out of bed » floatingbridge, posted by floatingbridge on October 11, 2010, at 12:31:52
FB please don't feel sorry to post. Stanford is very stressful for you but you are doing it. Please make sure to let us know how it goes. Good luck thinking of you!!!! Love Phillipa
Posted by Zyprexa on October 11, 2010, at 18:10:32
In reply to it's anxiety?, posted by floatingbridge on October 11, 2010, at 12:21:41
I take zyprexa for this!
Posted by Maxime on October 11, 2010, at 18:41:44
In reply to it's anxiety?, posted by floatingbridge on October 11, 2010, at 12:21:41
Great that you pushed though the anxiety. How did your day end, how do you feel now? xxx
Posted by floatingbridge on October 11, 2010, at 19:47:13
In reply to Re: it's anxiety? » floatingbridge, posted by Maxime on October 11, 2010, at 18:41:44
Right now I feel tired but alright. The Stanford experience was pleasant but not fruitful. Results of blood work and exams will not be shared with participants, only any MRI abnormalities. I think it's a no-go on my end, though they might want me.
However, I'm going to consult with the rTMS doc and find out more. The procedure is out of pocket, so the consult I'd just investigative for now.
I've had a fee big *triggers* this week. Guess they caught up with me
Posted by Phillipa on October 11, 2010, at 21:41:07
In reply to the day's update » Maxime, posted by floatingbridge on October 11, 2010, at 19:47:13
Not fair to not share the test results in my opinion other than MRI what did they consist Of? Phillipa
Posted by floatingbridge on October 11, 2010, at 21:49:10
In reply to Re: the day's update » floatingbridge, posted by Phillipa on October 11, 2010, at 21:41:07
I was incredibly disappointed by that lack of sharing. They wouldn't even tell me blood work levels, most interesting of all cortisol level.
I'll just have to wait until they publish the study next year. However, $350 for completing the study isn't worth the two day stay at Stanford for around the clock blood draws and then follow-ups.
:(
Posted by Phillipa on October 12, 2010, at 19:45:36
In reply to Re: the day's update » Phillipa, posted by floatingbridge on October 11, 2010, at 21:49:10
FB what the heck good does it do you now to not have the results. Assuming as clinical trial no right to have your records or can you????? Phillipa
Posted by Maxime on October 12, 2010, at 20:34:34
In reply to Re: the day's update » floatingbridge, posted by Phillipa on October 12, 2010, at 19:45:36
I think the purpose of the study is more for Stanford and not really for the participants. That is my idea of clinical trials. So I guess that is why you can't get the results. They have to finish the researh before they publish anything and even then I don't think that they give the info out to the participants. That is my understanding anyway.
Posted by Phillipa on October 12, 2010, at 21:55:24
In reply to Re: the day's update » Phillipa, posted by Maxime on October 12, 2010, at 20:34:34
In a way almost donating your body to science. I just would want to know so could take care of anything out of wack. Phillipa
Posted by floatingbridge on October 13, 2010, at 10:49:14
In reply to Re: the day's update » Maxime, posted by Phillipa on October 12, 2010, at 21:55:24
> In a way almost donating your body to science. I just would want to know so could take care of anything out of wack. Phillipa
Well, I'm not that altruistic. The study requires a 24 hour stay w/ rounds of blood work. They would send me a copy of the studying about a year.
rTMS costs 8,000-12,000. No insurance covers it. The RTMS coordinator called yesterday. I might have a consult with a different doctor to discuss treatment options again, including rTMS (though how could I afford it--and my husband says he is against it. Seems my meds are really pooping out as we say around here. My pdoc left today for 3weeks, and we'll discuss it then.He certainly deserves a vacation.
Posted by Phillipa on October 13, 2010, at 21:07:57
In reply to stanford » Phillipa, posted by floatingbridge on October 13, 2010, at 10:49:14
FB oh my!!!!! Phillipa guess just stick with meds for now then?
Posted by floatingbridge on October 13, 2010, at 21:51:51
In reply to stanford » Phillipa, posted by floatingbridge on October 13, 2010, at 10:49:14
Yeah, well. I can do three weeks. Thanks, though, for the concern.
I did get a bonus med from the rheumatologist that could help. Do you recall the transdermal patch I responded to called 'flector'? He prescribed it in pill form for the osteoarthritis beginning in my hands big toes and already entrenched in my hips.
So maybe less tramadol plus this naisad (sp) will work well enough and I can avoid cymbalta and neuropletics (sp?).
There's more he said, but basically no diagnosis. I don't fit any category.
Ordered no new tests.I think I'm gonna start telling people that I have fibromyalgia when I have to. You
know, having to cancel activities. I can have one good day followed by one, two, or more 'bad' days. After awhile, people think I'm a real flake.He said I have fibromyalgia symptoms, but my overall pain level is not that high. (My pdoc would say I misrepresented myself probably. I don't know.) Fatigue is the greater problem (true) but no sore throat or temps.
When I said what do I say to people, his counsel seemed unwise. That it was none of their business, and I can pick and cancel as I see fit. Most of us here know that is a s*cky way to live.
He ordered a sleep test. When I pressed him by suggesting what is cfs treatment protocol and can we just follow that--graded exercise, lifestyle counciling--he finally agreed to write a scrip for it.
Maybe I need to accept this. No one dies of fatigue he said. Jeez, I refrained from saying any one of a 100 sarcastic or despairing thoughts that came to mind
Oh well. How to live.
I'll probably have another consult at Stanford to explore treatment options for depression accompanied by fatigue.
This time around, with a different doctor, too, I don't expect a fiasco. My inquiry skills have improved, and let's say 'exposure therapy' has reduced my awe and fear of doctors.
Posted by Phillipa on October 13, 2010, at 22:05:01
In reply to Stanford, rheumy, + Stanford round two » floatingbridge, posted by floatingbridge on October 13, 2010, at 21:51:51
FB yes I do remember. So the rhemy was today forgot Tuesday sorry. Don't blame you for not wanting more meds other than those known to treat what you know you have and right now that pain and fatigue. Pain from hands to feet to hips? No swelling I'm sure as the doc would have seen that. Glad you can handle waiting the three weeks. I just think you should be able to have access to the test or them sent to your docs. That's not possible either? Love Phillipa
Posted by floatingbridge on October 13, 2010, at 22:20:11
In reply to Re: Stanford, rheumy, + Stanford round two » floatingbridge, posted by Phillipa on October 13, 2010, at 22:05:01
Maybe I'll call and find out if they'd disclose more to my shrink. My shrink said they did with another patient in another study. Could me I misunderstood. Thanks!
Posted by Phillipa on October 13, 2010, at 22:29:09
In reply to Re: Stanford, rheumy, + Stanford round two » Phillipa, posted by floatingbridge on October 13, 2010, at 22:20:11
FB I just feel that for your pdoc to know how and with what to treat you he should know and I bet he will let him know. Love Phillipa
This is the end of the thread.
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