momofsara

Sara is very distressed over her weight gain. She doesnt eat excessively, and is nauseated much of the time, so its hard to understand. She gets so upset over the weight gain because its so much easier on her to get around when she is thinner. Also some doctors have told her its better for her condition to be less heavy. Its disturbing, but hard to do anything about. Exercise is not possible at this point, but we hope to have some things worked out soon for her to be on a beginning exercise program and also a good healthy diet. Just adding my 2 cents worth------Susan

GREAT NEWS!!!!!!!!! Hope all goes well for you. Susan

Suzy, first of all let me say how very sorry I am to hear about the terrible experience you had. I totally understand,Sara has been through much the same thing. Now, I ALWAYS go in to doctor visits with her and I'm not at all afraid to interrupt, or correct a doctor.. And Earthmother has exactly the right idea and I totally love how she expresses herself. WONDERFUL !!!! Take care sweetie, and know that we always are here for you and we do care....... Love and hugs--Susan

Melissa--I'm so very glad you have a diagnosis at long last. Now on to the treatment, and I hope it does wonders for you. Also I'm happy you have such a good doctor. Best always--Susan

I'm so sorry to hear of this tragedy..... Love and hugs --Susan

Welcome back, Ami---so sorry you've had so much to go through. I am truly hoping things are now on the upswing for you. And happy birthday to Mike. Take care and once again, its nice to have you back. Hugs---Susan

Welcome, Julie--this is indeed a wonderful, helpful place. I have gained much knowledge, and most of all, support here. Its been a real blessing in my life and I know it will continue to be. Stay warm, and take care of yourself..... Susan

Radha--Sara doesnt have so much of the flashing, floater problem. Hers seems to be that one of her eyes "drifts" off the the side. It has been happening to a lesser degree for several years, but now is more obvious and happens much more often. A doctor she saw while living in California called it nystygmus. I think there are several causes for this. Do you ever have this to happen to you? Just wondering if the two could be connected....... Hope you find some help, I know that flashing is a real bother. I have floaters due to a posterior vitreous detatchment. So I know from personal experience what an aggravation they can be. At first, I kept swatting at a non-existant flying insect !!!! Then I thought I had something on my glasses---- Then I realized it was ME, not something else. Best of luck finding something to help you with your flashing, floater problem. Take care and keep us posted...... Susan

Welcome, Jan. You have found a place for comfort, support and help. You can feel free to ask any questions, vent frustrations and also offer comfort to others. Glad you have a good doctor, so many here have had bad experiences with non-believing docs. Anyway, welcome to the best place possible. Cant tell you how much help and compassion I have found since joining. Healing hugs and very best wishes---- Susan

DOCTORS------------SNARL- -------HISS- ------- So sorry for your bad treatment, doctors can be so inconsiderate, and just plain DUMB !!!!!!!! There are some good doctors out there, but unfortunately they can be very hard to find. ((((((((hugs)))))))))) to you take care and keep us updated Susan

Hi Tony, and welcome. You have found the exact right place for information and support. I'm happy it seems as if you have found a good medical team to work with. Hopefully they will get you started on some measures to relieve your symptoms. As firewatcher says, get and keep copies of all your test results. I cant tell you how many times those have come in very handy in Sara's case (btw, that is my daughter who has severe progressive dysautonomia) Its good for you to have these reports to refer to and also to give to new doctors. I hope you will cease having symptoms and will return to your previous good health. Take care and keep us posted, we all care about each other here. And once again, welcome to our world !!

Sara's nerve conduction test showed out of 11 points tested------- 1-marked; 1-severe; 9-very severe.. Good luck with your test, if you decide to have it done. Susan

LOL---LOL---LOL------HAHAHAHAHAHA LOVE IT !! ABSOLUTELY LOVE IT !!!!!!!!! Best idea ever, firewatcher !!

Let me just add Sara's experience with non-believing doctors. It is so very frustrating to KNOW that something is wrong and have the medical profession say--no you dont, nothing shows up on your tests, so it must be in your head. And as her Mother, I could SEE what was happening to her, and I was also insulted that they were in essence telling me that I was crazy too. So we were both feeling insult and anger. After all, its your body and you know what feels right and what doesnt. Please dont ever feel bad or embarassed to vent here, we are here for you and we understand. Take care and good luck with your treatment. Hang in there and keep us posted, we care......... Susan

WONDERFUL !!!!!!! So glad you are going home. Take real good care of yourself and feel better soon.........Love, Susan

WHOOP-TE-DOOOOOO!!!!!!!!!! so glad you found this wonderful doctor, now how about having him cloned, so you can share with the rest of the forum??????? LOL--- all kidding aside, I'm very happy for you, sounds like you have a keeper...... Susan

Just adding my thoughts, prayers and healing hugs to our own little Sunfish...... Hope you are back in your own bowl very soon. We all love you here and we are anxious to have you back here. Take care and feel our loving vibes coming to you from all around. Susan

Congratulations on not having MG. I am very happy for you. About the Lyrica, I take it for rheumatoid arthritis, it does help with the pain, but I will warn you, it has made me gain weight. It may be a worthwhile trade-off for you however. Best to you, and congrats again.......Susan

Have you tried the University of Missouri at Columbia?

cma--welcome to our group. You have found a place where you are accepted, cared for and understood. This forum has been wonderful for me. The support is amazing. My daughter was diagnosed at age 19, and has had lots of problems from various illnesses since. The main thing is never give up and never give in. I know its scary, and seems dreadfully unfair, but you are among friends here who will help you with information and caring. Best of luck with your treatment. And I truly hope you have a doctor with the knowledge to treat you properly. Gentle, healing hugs from across the big pond -------Susan

Hi Shelby--Sara's second marriage is about to end because of her illness. Her first husband was just a jerk---he left her with no money, and no income,and took almost everything with him. He just said he didnt want to deal with a sick wife anymore. He said he was young and wanted to have fun....Sooooooo..... Then she married again and this guy is basically sweet, but he has medical issues of his own and is simply not able (physically or mentally) to care for her. So she will be moving back home with her Dad and me. She would love to find someone to share her life with, but it takes a very special person to live with another with a serious medical problem. Do not give up, there are many on this forum who are in stable, loving relationships. It is important that you do not give up on having as normal a life as possible. Take care,and keep the faith----- Love, Susan

bluesman, I'm sorry you are having this difficulty. Seems that life is never easy for people with dysautonomia. Before Sara had to stop working,driving, etc. she was working for a large chain pharmacy. Her employer was ok with her sitting down when she needed to, but the other employees were not so nice. Since dysautonomia is an ' invisible condition ' , they thought she was just lazy or faking. So it made things tough on her at work. I cant offer much in the way of help in choosing another profession, just offering support and concern for your problem. BTW, I noticed you had been to the MVP center in Bham, what was your opinion of them? Did they help you? Sara's doctor is considering sending her there, but we need to know if it will be worth it. Shes been through so many tests, and treatments, if they cant offer anything different, we dont see the point in putting her through more. Sending you my thoughts and best wishes, Susan

Sara was diagnosed at 19, so I can certainly understand your concern and frustration. You will find much information and help here on this site. It has been such a help and benefit to me. Hope your daughter has many days of feeling better. And I do know that sometimes the pots does go away. I certainly hope this is the case with your daughter. I just wanted to add my welcome to this wonderful site. Best to you------Susan

Yes,Sara has very visible veins, especially on her chest. They are small, but noticeable. They never bulge, or stick up, thats why she has the power port, her veins are so small and fragile. Susan

Thanks to Jennifer and Janie for the interesting link to Dr. Bell's article. I learned a lot from it and it is in plain language so I can pass it on to friends and family who " dont get it " when I talk about such things as Postural Orthostatic Hypotension---- I am going to print that article off and keep it in my purse with the other stuff I keep to show doctors, medical personnel, family, etc, etc. Thanks again Love--Susan