April 13, 2010

April's Updates

Therapy: I have been in Neuro Therapy 2 days a week and speech therapy 1 day a week. I was told by my therapist she doesn't work on the orthopedic part of me that I needed to go to see my ortho therapist. That ended being 2 days with him as well. 5 days a week in therapy I needed a break. In Neuro therapy they work with balance and endurance she tested my walking for 1 minute at her normal pace. That was a joke - I walked 100 feet - pulse was 124 and I was ready to pass out - her response was I guess you are not ready to do any kind of Pulmonary Rehab. What was she thinking?

With all the therapy going on I was being torn apart. I was so tired I didn't know what to do. Finally I talked to my neuro therapist and asked her what she was trying to do with me and if there was any way my ortho therapist could work with both aspects of my therapy? She talked to Craig and now I am doing only 2 days of therapy.

Colon: I have had 9 weeks of biofeedback for my colon and she stopped my treatments because it isn't working. Well both my colon surgeon and my GI didn't think it would work because my hypo-motility issue is coming from the small intestines not the large colon. Anyway we tried. I see my GI May 5th to see what I am up against.

Pulmonary: I saw my Pulmonary Dr in Feb. and he said I am not getting better but worse and said it will be interesting to see how the autonomic testing shows. He agrees that something is causing my autonomic system to go haywire. He had me do an esophragram because he said if the Phrenic Nerve is not function the esophagus wouldn't be either. That test came back - mild esophageal dysfunction. Another autonomic disorder.

Heart: Somewhere in between all this I received my Echo/Bubble Study showing Left Ventricle Diastolic Dysfunction (LVDD), with impaired relaxation. Right ventricle: wall thickness mildly increased. Right Atrium is mildly dilated. So basically the Dr who saw me in Jan. never told me this I found out when I requested to report 3 times. This test shows I am having heart problems but she said nothing. I did talk to my Cardiologist but there isn't anything he can do for me now because of my consistently low blood pressure. The meds they put people on for this condition drops the blood pressure and for me he said it could kill me. So I have to get worse before I can get better.

I was told by a Rheumatoid Dr that my problem is just Fibromyalgia - but no one is in agreement with her.

Autonomic testing: My autonomic test results came back a couple of weeks ago, my neurologist called me to tell me the news - inconclusive - telling me some tests were normal and others did not give them enough data to give an autonomic diagnosis. She wants me to go to another hospital to have a complete work up because she believes without a true diagnosis as to what is going on I will not get better. Treatment can't begin until they know what they are dealing with. I am now waiting for my PCP to set up the arrangements for UW Madison and get back to me. She has been out with the flu and just got back today.

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