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Old 06-01-2009, 08:28 AM   #1
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Join Date: May 2009
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toy23 HB User
Test results came back...still no diagnosis

As I posted before, I had bloodwork ordered from my neuro appointment last month. I finally got the results at my regular Dr.'s appointment last week. They really didn't say much about them other than my ana was positive and the dsana was indeterminate at > 7. He told me that 5 was negative and 10 was positive. He told me that he wasn't really worried about the ana tests at this point because my liver and kidney function tests were normal but some of my other blood work had him concerned. My chloride, hgb, hct, mch; were all high, and my platelet count and sed rate were really low. He had me go and have the cbc panel done again the next day, and he got the results that afternoon. His nurse called me to tell me that the Dr. wants me to have a chest x-ray and a pulminary function test because this CBC panel was worse than the one from before. He told me that he is concerned that I have a condition called polycythemia which is a blood disorder, that causes your blood to become to thick leading to blood clots, strokes, heart attacks,etc.
He seemed very disturbed when he was reading the reports that I had done previously, and each report that had a CBC panel on them showed that my levels were off and every Dr. that I had seen at the time had put down that it was due to dehydration. He said that he could understand if had flucuated from time to time, but for it to get steadily worse the way it has somebody should have picked up on it by now.
He also told my to file for disability due to the fact that my myoclonus has not gotten any better. He told me that in his career he has only seen 3 other patients with this condition and 2 of them have gotten better, but due to the severity of my shaking and jerking around he doesn't know if I will ever improve, and if I due it normally takes anywhere from 18 months to 2 years before it goes away.
I realize I'm still no where near having a diagnosis, but at least I have a Dr. who realizes that something is definitely wrong with me and is willing to find out what it is.

Thanks for the support.

Sue

 
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Old 06-01-2009, 12:15 PM   #2
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Join Date: Apr 2009
Location: Johannesburg
Posts: 221
Angel MJ HB User
Re: Test results came back...still no diagnosis

Sue ***BIG HUGS***
so glad to hear that your doctor is so on to of this! makes a difference finding someone trustworthy!
the odds are good if 2 out of 3 (in his experience) made a recovery ... you can also do this!
i guess you only talk treatment options once a dx has been made?

hang tight, get thru the tests and keep posting!
Angi

 
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