ernestine

I have lupus. They said that was attact my sytem to get the dysautonomia.

Hello Michelle I wanted to thank you for the article. I want tell you how many times it took me to find it. You know how I am. ern

I know that as been up but don't have engery to go bac through the post. Do the compression stocking really help.And with so how do you know what kind to get and where do you get them. Pooling is really bad for me right now I have a ucler and if they would help I sure would check with dr. to see about them. thank ern

Hello MightMouse I was so sorry to hear about your appt was cancelled. Have your neuro talked to about Botox for your mirgrines? I have had them for so long and have tried everything and my neuro nurse was able to get my insurance to pay for them. I got my first round in Nov. of last year and one again this month. I have to say I have only had one very bad mirgraine in mid of Jan. It but my rear in end in the bed it was so bad. But sense the botox first of feb. they are gone. I just can't understand why the fda want approve them for people with dysautonomia I don't know why but I do know that they go togther. Hope you are better soon take care ern

Merry Christmas and Happy hannukah to you all. Michelle and all the other that keep us going Thank You and may God Bless all of us. ern

Nina, Do you use the pilates machine. Like the one that is on qvc? If so how long have you used it. Thinking about ordering one? I know I will need to be very slow. But do you think it will help? I talked to my Dr. and she said it would bo ok. She does the mat. But I thought the machine would help be if I got dizzy. Thanks ern

Thanks I will try to get a rx for the potssium. They are at worst in the mornings. i will call and try to get the blood work done. Ane sunfish I do not post that much so I don"t never make much sense. BRAIN FOG you gotta love it. ern

Haveing atlot of irregular hearts beats. Can any help with some answers that might help Thank You ern

Hello Michiganjan, I wanted to send you and Jeff my prayers. I will Keep them in my heart. The moon was full this last few evenings next time you see the moon You will know that all the prayers here in north fla, are up there for to reach for. God Bless and please take care of yourself. Jeff going to really need you. Take care and God Bless. ern

Hello everyone I am here in hot Fl, Pensacola

Gens and jenn202 and the others thanks for the infor. I will start doing looking at the hoses. I think I will call Franics. Thanks Ya'll again ern

Thanks for the help. but what ones should you get to wear around the house and to do errons in. Do they help with pooling. I saw the price about 50$ Would like to be sure should I call the dr. thanks again I don't post a lot because of the brain fog I know I don't make sense. Ask Michelle when I first joined she thought i was from anther county ern

Hello Everyone haven't posted in a long time . I need to know our the hose work and where to get them. Do they work? I would really appreciate some infro on them thank ern

I is me again you can tell I am full of brain fog. ern

opuss, where do you live? I live in pensacola, about 45 to 50 minutes from Moblie.About the second exist from ala line. And I eant to tell you I'm am very very scared. Should have left. Please keep me in ya'lls prayer for me and my family. I wish I would just got out and stay that way until it is over. Love to yall ernestine

Hello everyone, I also have autoimmune diseases. Lupus, Arthritis, Fibromyalgia.When I was diagonosed with dysautonomia, back in Aug of last year. The said that the lupus attact my nervos system.

Hello ethansmom; I am Ernestine I live in Fl. Here in Pensacola, I see a wonderful Dr. His name his Dr. Randy Thompson. His is great Dr. not because I say so But he also has dysautonomia. If you e-mail me I will give ya his number. I don't know where you at in fl.

blackwolf I am so sorry for you and your family are going through at this time. You are in my prayers, Please take care of yourself and get plenty of rest and lots of fluids.

I to suffer from cfs but I also think that the lupus has a large part into it. I was only diagnosed with pots just llast Aug. and if I don't take a nap I also get the passing out. The Dr. said that the lupus attack my nervous system. I only can just sleep abou 4 to 5 hrs then up thinking water.

Deanna, Hi I am Ernestine a newbe. And this is my first reply. I know how you feel I stay that way also I take xanax, helps but i'm still a big drama queen and it always over the small thing's. Yes I think it is the dysautonomia, cause we do not get enough blood to our brain. Hang in there, thinking of you. Ernestine