momwithsix

Hello everyone...I was diagnosed with Pure Autonomic Failure but they aren't ruling out MSA. All of these diseases are so confusing because they all seem to have the same symptoms. Is there any one symptom that determines what you have? When I read about POTS, that's me...when I read about MSA, that's me... I'm not going to lie, it's so hard knowing that MSA could be in your future. I really try hard not to think about it, thank God for my semi--good days and try to stay strong on the lousy days...tho that doesn't always work. It makes me so sad when I see the worried look on my kid's face because I can't make it across the room without squatting or stumbling..I so miss doing just simple ordinary things, walks, cooking, working and yes...even cleaning! Tho I can still cook and clean but not like I use to. I am so very lucky to have the best husband in the world, but I still feel like a failure as a wife and mother. Sorry, didn't mean for this to turn into a boohoo session...I don't talk to too many people about the possibility that I have MSA, my husband insist I don't have it and I don't want people to know about it because I don't want people looking at me like I'm dying. OK, I think I will be done for now..thanks for listening!

THANK YOU...so much to each and everyone of you who have taken the time to respond to my post! Especially you Sunfish! What a wealth of information you provided. I know deep inside everything you said is the right thing! I know I need to snap out of it and I do feel much better today! I am just lucky to still be able to move around, go to work (tho some days are hard!), even cook dinner and clean the house! I have a wonderful husband who would do anything for me and 6 fantastic kids who deserve everything I can give them. The increase in salt intake has made a huge difference...I bet in the past month I have only had a handful of lightheaded episodes, which is great considering before that I was ready to quit working because I couldn't walk 2 steps without my blood pressure dropping. I do have concerns about the sweat test. I usually have constipation, but the morning of my test, not so constipated any more! So I took an Imodium because I knew I would never be able to just lay there. Well, I guess I shouldn't have done that, the doctor did say it may have compromised the test. My middle section hardly turned the lovely powder purple...but since my hysterectomy I get night sweats really bad. If, say for instance, I sleep hard on my left side, I wake up wet with sweat on that side. Is there a difference between sweating on that test and sweating, say if I had blankets on me? Right now we are having a blizzard and it's -12, I wish a hot flash would hit me now!! Well, I am sure there will be many more questions to follow! I just needed to send a big thank you to everyone! I knew I would find the support I needed here and hope my questions helped others as well... Thanks!

Hi all... Thank you so much for this message board. I just got a diagnosis from Mayo this week that I have PAF. I am so scared and nervous that this information is all that keeps going thru my mind. What is it? What caused it? From everything I read, it is not going to go away, but it seems the symptoms can be controlled to live a relatively normal life. But the thing that keeps me up at night is the fact that it could also progress into MSA. Has this happened to anyone? What are the chances? I don't want to walk around all day wondering if every little twinge or trip or whatever is this thing getting worse. I want to enjoy my time and my kids, like I use to...not curled up crying. I, like many have increased my salt and water intake...how do you know when you have had enough? What works for you? I also have started taking Pyridostigmine for orthostatic hypotension and constipation...anyone else on this? As you can tell, I'm not handling all this very well and will have lots of questions I am sure. Thank you so much for any info you can give me.