Here's my recent correspondence with June at TCI:
June,
I have faxed over my DEXA scan and my blood work from January and February. I hope you have received them.
I'm still having good and bad days, but overall my symptoms are still terrible. My instability symptoms persist, with instability headaches waking me up at night. The nausea has worsened significantly this week. Some days, I can barely get anything down. Sometimes, I can only swallow food when my body is actually horizontal, or I will gag it back up. Hopefully, this symptoms will pass or reduce soon, because I'm not getting adequate nourishment right now. I will have to start supplementing with Ensure.
I have been blacking out more often, and the shortness of breath was so severe that my local cardiologist and my POTS specialist sent me to the E.R. for testing. Of course, my heart and lungs were functioning fine. They said I was just suffering from sinus tachycardia, where even my resting heart rate wouldn't go below 95 bpm, and this was causing the shortness of breath.
But each day has different challenges. Some days the nausea is the worst, sometimes the headaches, and sometimes the shortness of breath and passing out. Some days, it seems like everything is wrong, like this weekend, when I've been completely restricted to bed except for assisted bathroom trips.
My next scheduled doctor's appointment is April 26th with Dr. Camacho, my endocrinologist. I will ask her to order my next DEXA scan at that point. I plan on getting it done as soon as possible after that appointment. Then, I will send the results along to you.
Should I consider scheduling an appointment at TCI for sometime in May? If so, what kind of appointment would I request? I just don't want to have to deal with too much of a wait for an appointment. What would be the best thing to do?
Thanks so much for your ongoing help.
-----------------------------------------------------------------
Hi Carolyn,
I got your January DEXA scan. I compared it to the one done on 3/2008: there was a slight worsening. I don't remember when you started treatment. So let's see what the next DEXA scan in April will say. Hopefully if it is improve, you can go ahead with the surgery.
I guess you can come for a visit in May. You usually see Dr. Kula, correct? You may need to book now because sometimes he is booked up fast. If the DEXA scan is normal and if Dr. B says OK, you might want to book for surgery too. You can't book for surgery until the DEXA is normal and/or Dr. B says OK.
I don't know, do you want to wait until the result is back or make the appoiment with Dr. Kula for May?
Please let me know,
June
-----------------------------------------------------------------------------
June,
Thank you so much for responding. Dr. Camacho ordered the January DEXA scan as a preliminary scan. It was performed only 3 weeks into my treatment, so for her, it is considered the "before treatment" test. My next scan will be done at the end of April or the beginning of May, and hopefully that one will show improvement.
The reason the osteopenia got worse from 3/2008 to 1/2009 is that I was untreated during this time. I was not able to find a doctor willing to treat my osteopenia for 8 months, which gave it time to worsen.
I don't feel that I need another appointment with Dr. Kula at this time. I think the next time I come in, it will be to see Dr. B for surgery. So for now I will wait on scheduling any appointment.
Thanks again.
Carolyn
