Tina, I can surely sympathize with your history. My problem started 17+ years ago with tachycardia, trouble breathing, etc. I was tested for everything under the sun (except PN). I was taken to emergency for tachycardia and they diagnosed me with a monoclonal (walking) pneumonia. When the tachycardia and other symptoms did not resolve, I was diagnosed with having anxiety attacks. I now note that I had a total hysterectomy about 3 months prior. Also had my galbladder removed in 1986. With both of the operations they found severe inflammation and scarring.

With time, I developed arthritis and autoimmune symptoms similar to lupus or RA. I am currently treated for arthritis (with Humira and low-dose prednisone- 3 mg) and fibromyalgia/chronic fatigue. I have had all positive pressure points for years. My labs show inflammation periodically, and immunoglobulomenia (?). I have only had a +ANA once and it was not strongly positive. Hence, they shrug their shoulders and treat the symptoms. Something going on but they cannot identify the antibodies.

I was hospitalized a year ago with severe stomach pain and was diagnosed with gastroparesis. I suffered a severe dysautonomic flare then and after my face, head, arm and hand were numb, painful and tingly. The doctors didn't really pay much attention to these symptoms (low BP, fever, severe itching, migraine, urinary problems) at the time. They were focused on the gastroparesis only. I was in severe pain then in my abdomen and required patient controlled anesthesia and then hydromorphone at home for a while. Too much pain for GP - I think the dysautonomia causes severe abdominal pain at times (just my experience over the years)...the Cat Scan was negative.

My feeling is that the viral pneumonia, stress, perhaps some genetics mixed in started this whole mess. Over the years, I have developed the SFN and that was recently diagnosed with a skin biopsy. The dysautonomia has changed somewhat in character over the years, but has not ever completely quieted. I now get the flares that make me feel like I described earlier in this thread. It makes me feel like I am dying, lasts for several days and takes weeks to months to recover from. I also get 'complicated' migraine with the flares. When not in a flare, I still have symptoms of flushing, GP, muscle fatigue, ringing in my ears, pain, blood pooling in my legs and abdomen and general 'unwellness'.

I don't know how this illness will further develop. I don't even know what is causing it. This is the ultimate frustration of many of us here. I am just hoping Dr. Khurana can help. I also have an appointment with Dr. Sumner at Hopkins next week. The appointment was made months ago by my neurologist, so I kept the appointment even though I am seeing Dr. Khurana because it is yet another opinion.

Mere