Back From Cleveland Clinic

[babettess]

Hi Everyone,

I made it through my testing at CC, but just barely!! Overall I think I will get valuable information, but the tilt and the hemodynamic tests were difficult to get through.

I don't have all of the results yet. I will get the full info at the end of the week.

Here's what I do know:

The echo stress test showed that my heart is healthy. The technicians who administered this test were wonderful and I'm glad to have had it done so I don't have to worry about my heart having problems if I exercise.

I don't know the results from the QSART yet.

The TTT was very difficult for me as usual. I made it through the 2 minutes at 30*, the 2 minutes at 45* and 5 minutes at 70*. I felt horrible as soon as they started tilting me. Of course my HR went up over 30 points immediately and never came back down throughout the whole test. My BP did drop which didn't happen in my first TTT. At 9 minutes total, I asked the nurse to put me down and at that time my BP was 90/55. I did not pass out. Thank goodness!! Dr. Fouad looked at my test while I was recovering from it. She is absolutely wonderful and I would recommend her to anyone.

She found on my heart rate rhythm strips that my sympathetic nervous system and the AV node of my heart are battling back and forth as to which one controls my heart beat. I get symptoms whenever my nervous system kicks in. She will know more after looking at all the tests.

The blood volume test preliminary results say I have 7% less blood than I should have.

The hemodynamic test was the worst. I had to lie still for over an hour total after already lying still for the blood volume test. When the nurse tried to sit me up I felt horrible. I felt much worse than the TTT. They were unable to sit me up any higher than 45* and I was supposed to be at 70*. They also couldn't lower my feet because I was too symptamatic. My heart was going crazy and I felt so horrible. After the test was over I was shaking horribly and very weak and woozy. NOT a fun experience but hopefully I will get good information from it. I don't think this test would have been as bad if I would have had a good nurse. The one I had was not very compassionate and stressed me out so bad that I think she was part of the problem. She lied to me several times about various things and I personally can not tolerate lies.

The Heart Rate Variablity was a breeze. No results yet from it.

I will hear from either the dr. or his nurse at the end of the week with the full report.

Even though I had some symptoms and I'm still trying to recover, I would go have the tests again. Just knowing why I can get so symptamatic so quickly was a relief.

I still have to see a rheumy to R/O EDS and a endo to see why my histamine level was so high when they tested my urine histamine level.

Should I be seeing an endo or an allergist about the high histamine?? Does high histamine in a 24 hour urine suggests MCAD or mastocytsis?

Thanks for all of your input. If anyone would like more info about the tests at CC, please let me know.

Babette

[juliegee]

"I still have to see a rheumy to R/O EDS and a endo to see why my histamine level was so high when they tested my urine histamine level.

Should I be seeing an endo or an allergist about the high histamine?? Does high histamine in a 24 hour urine suggests MCAD or mastocytsis?"

Hi Babette-

Congratulations on surviving all of your testing! High methylhistmine in your urine is suggestive of MCAD. MCAD could also account for your autonomic irregularities. You should also have a blood test to check serum tryptase.

I would get to a masto specialist pronto. I highly recommend Dr. Marianna Castells at Brigham and Women's in Boston.

Best of Luck-

Julie