Norbert's Story - Primary Autonomic Failure

I've had Hypotension attacks since age 11. I am now 69 and was just diagnosed for Primary Autonomic Failure. I know that my diagnosis is really a term that includes Parkinsons (PD), Multiple Systems Atrophy (MSA), and Pure Autonomic Failure (PAF). I believe that the doctor diagnosed me for the category because he only saw autonomic symptoms and because PAF sometimes turns out to be MSA. Throughout 59 years of symptoms I was diagnosed for many different diseases. Some of those, like Epilepsy, were later taken back, some diagnoses are still sticking around because they were really never ruled out. Therefore, my symptoms could really be caused by my severe spinal cervical stenosis or any of several other problems.

My symptoms are:

1) Orthostatic Hypotension - the hypotension happens most of the time when I get up from anything, but also without apparent trigger. It usually starts two minutes after getting up, gradually gets worse for the next two to ten minutes, and disappears with a recovery time of a few seconds following the worst effect.

2) Complete genital dysfunction - no errection, not even during sleep, and backward ejeculation.

3) Urinary retention

4) Unsteady gait - most unsteady during and following the OH, but often without any trigger and lasting up to several hours. I thought I had ataxia at first, and Episodic Ataxia has not been ruled out. I often feel as if drunk - cannot walk straight and miss things that I reach for.

5) I also have atrial fibrilation - theoretically that could be part of the PAF or it could stand alone.

6) I have stage 4 renal disease - most people with this get it from diabetes but mine was proven not to be in spite my diagnosis for diabetes. After my heart attack in 2011 I had several heart procedures and the kidney function went from perfect to stage 4 within 6 months, and then stabilized. According to blood tests and the time since then, the renal disease is not due to diabetes.

7) my diabetes is probably also due to the dysfunction of the autonomic system.

8) Arthritis in my fingers

9) Vasomotor Rhinitis - a constantly flowing runny nose with a clear and watery discharge that probably is due to the dysautonomia.

10) I only sweat from the top of my head.