Mrs. Glass

I was just wondering what web sights are best to get information . I have been to the Vanderbilt University Web site but it never changes. Of course it could be me. I used to be great on the computer now it seems like I can barely remember how to type anything in. It is very upsetting. So I wanted to take some control back in my life and do some research, but I dont know where to begin. Any suggestions. I can not spend a lot of time in front of the computer these days, it hurts my eyes and the screen gets distorted. But I figured if someone knew of Websites to go to that would save me some time in front of this screen. Thanks Vanessa

I was on .6mg a day and was still having problems. Then he added 10mg of midodrine, that seemed to work ok for a while, but then I did not know that your blood pressure can go up when you lie down and I ended up having a stroke. I am also on pain medication which raises my blood pressure so they took me off of the florinef and the midodrine temporarily until I can get thriough surgery. Then they will probably put me back on one or both on an as needed basis.

Right now everything that I eat seems to make the symptoms worse. I was on Zantac for my stomach and it wasnt working and my neurologist said that he did not want me on a lot of medications right now. That I was to stop taking everything that I could not live without. The one thing that I do crave is Coffee! I do not know why, I used to have only 2 cups of coffee a day but now I want it all of the time. I do not drink it all day but I want to. Vanessa

I fight the feeling all of the time. I had not been sick or been to the Dr for illnesses in over 20 years. I often wonder if my go go go attitude and not having regular checkups brought this on. My Dr keeps asking me if anyone in my family ever had nerological problems, and I keep telling him the same thing. NO! no one in my family as far back as I can remember ever had problems like this. So I often wonder if I did something to bring this about. But I guess I will never know. I just keep trying to put one foot in front of the other. Vanessa

Right now most of my time is spent at Drs. offices. The rest of the time I am usually at my daughters house. Since the stroke my Dr doesn't want me alone until they can start me on medication again. I also like spending time with my grandsons, the oldest one wants to learn how to cook and he is doing a great job. I havent figured out what all I can do right now. But I am trying different things. I have noticed that my strength doesnt last very long so I try to do things that are sitting down. Right now I am making Christmas Stockings for the whole family. It is going slow because of my eyesight. Any ideas, on what to do with a day when you do not have the strength to get out of bed? I welcome your input. Thanks Vanessa

Good Morning, Yes, my eyes seem to be getting worse too. I can not stand to be in a room with flourescent lighting, or outside with out my dark shades on. I try to read and my eyes will not stay focused, and the worse is when they gray out, it will either be totally or just the peripheral vision. It is very frustrating! My Neurologist told me that it was all part of it. When I was diagnosed with Glaucoma my eye Doctor said that he could not get my eyes corrected to 20/20, so he sent me to a specialist. That guy was a big joke, all he did was take pictures and told me to come back in 2 years. I have not found anything that seems to help with the blurring, the only thing that I can do is to wear dark brown shades in the sun and flourescent lighting. Hope you find an answer. Vanessa

Thanks for responding, I do not know if any of this is related it just seems strange that I was perfectly healthy and then I was diagnosed with the Osteoporosis, and then the Glaucoma and now this stupid disease. I have an appointment for MRIs and and EMG on the 30th. Yes I was on steroids, but only after these 2 were diagnosed. and only for a short time, one for my back and then I was on Florinef. The Doc had to temporarily take me off of the florinef and midodrine because it was raising my blood pressure too much due to the pain and I ended up having a mini stroke. Our local hospital is so horrible that they treated me for a general headache and sent me home. To get quality care from a hospital I either have to go to Las Cruces or El Paso and in an emergency situation it is just too far. Talk to you later.

Hi, I am new to this forum, and I do not see so well any more even with my glasses, so if I misspell a word please forgive me. My question is, Is there any evidence that Glaucoma and Severe Osteoporosis could be connected to Autonomic Dysfunction? I do not know which form that I have yet, my Neurologist wants to do some research on it and then run some specialty tests on me. No one in my family history has had any neurological problems or Osteoporosis. I am only 48 and my orthopedists said that my bones are like glass. All kinds of tests were run on me to see if anything metabolic was the cause, and he found nothing.I was diagnosed with glaucoma and osteoporosis just a few months ago and diagnosed with Autonomic Dysfunction just a couple of weeks ago. Thanks Vanessa

Hi , I know that it is scary, and frustrating when a person has been so active and then all of a sudden they can barely get out of bed. I am new to this I have just been diagnosed. What my PCP told me is to learn meditation, it will help to relieve some of the anxiety. Our medical problems may not go away, but we can help ourselves to try to cope with it. What I do is either get in a bubble bath or lie in bed with my eyes closed and I concentrate on my faith. I draw my strength from my God. and before I know it the anxiety attack is gone. I know that I am new to this being sick all of the time, but I am going to fight it with everything that I have. I am not going to let it take me over. The one thing that I think that I hate the most is not being able to enjoy a meal. No matter what I put in my stomach, I bloat up and my stomach hurts, but I am going to try different foods to see if some hurt less then others. You hang in there, and fight this thing. Make your mind strong, it is our best defense. Vanessa