lynnky

Thank you for your posts, and for the welcome. I am not feeling so well on the Midodrine. Does it take some adjusting? I've been taking it for 5 days now, three times a day. It's really making my BP fluctuate it seems, too. I am at a loss as to what to do about the autoimmune issue. Should I see another immunologist or try an endocrinologist? I am just not feeling well, and am really frustrated right now. Just so tired of feeling bad, and the med. is making me feel worse, instead of better. Thanks again. I will be sure to share anything I learn. Lynn

Hi, I am new here, and have already learned that I will learn a lot from just browsing some of the posts here. I was just diagnosed with Dysautonomia after a positive tilt table test. I have been through years of health problems before arriving at this diagnosis. The cardiologist I am seeing believes that there is an underlying autoimmune problem-- he was not the first to suggest this with me, so I am still trying to get to the bottom of understanding it all. He did put me on Midodrine to start with treatments... I am not liking the side effects at all thus far. I wondered if anyone here would be able to share if Midodrine has been helpful for them? My pulse rate hovers around 100 while at rest without the Midodrine. During the tilt table test, after they gave me nitroglycerin, my pulse rate went from 155 to 80, and my BP went down to 64/32. My BP has been high at home since starting the Midodrine, and I am not feeling well at all. Normally, I pass out in high adrenaline situations, and have lots of dizziness/near syncope when standing for too long or when standing too quickly. In my search for the autoimmune factor in all this... please forgive the length of this post, but I would like to just give a brief background of my health issues here to see if there are any others out there who have been through similar problems-- possibly to hep shed some light on a direction I should go... I am now 36. When I was a kid, I had something called Henoch?Sch?nlein purpura, which is a systemic vasculitis, which has something to do with the immune system. The doctors told my parents that it was like an allergic reaction to something, but they couldn't figure out what. I think my immune system never knows what to attack. An immunologist told me a couple of years ago that I have a T-cell deficiency, that I have CMV negative blood, and I had a low-positive ANA. I had been through two years of fighting a (vaginal) yeast infection after a long throat infection they couldn't figure out, when I ended up seeing him. I have a lot of floaters in my vision, and have what they have called optical migraines. When that happens, I have a zig-zag flashing on the outer portion of my vision that moves its way inward until I lose vision for a while. I also have regular migraines. I have joint pain and extreme muscle fatigue-- which led to the fibromyalgia diagnosis last year. But this is something my cardiologist is not completely sold on with me. I also have neuroma in my foot and Raynaud's, which is a circulation problem. I am on Neurontin for nerve pain and twitching. I had an EMG done and the neurologist didn't find any abnormalities that would cause the twitches or nerve pain. When I have them really bad, the twitches are all over my body-- 24 hours a day, and you can see them. I have been emailing with a cousin who has had some similar symptoms, and feels that there is a hereditary connection with the autoimmune issue. I do have a positive ANA, but sed rate is fine. I just have to get to the bottom of this and would appreciate anything anyone might have to share. Thank you so much in advance. I am sure I will learn a lot here. Lynn