Shawila Posted May 21, 2004 Report Share Posted May 21, 2004 Hi,I am new to this Forum. I was diagnosed in Febuary with Dysautonomia. It has been a long road with many mis-diagnosis and incompetent medical physicians. Beginning of January I found a new Physician out of a University Hospital that is now helping me with this condition and directing me for the right care.I have one more Specialist to see and then he is sending me to New York City to see someone.He now is calling my condition Primary Dysautonomia and the Renal Physician stated that I am haveing autonomic Neuropathy along with this. I just cannot believe the multitude of symptoms I experience on a day to day basis with this condition. It sounds crazy, but it is like my whole entire body is failing. I am seeing a multitude of Dr's, trying to work, have some normalcy in life, without complaining too much.Some days I just want to curl up and hide, because I feel so bad. I try not to give in, but this is getting depressing. I am only 34 years old and two years ago, I didn't have anything wrong with me at all. Perfectly healthy and running off to the races.Every day I try to ignore what is happening to me, but the reality is, it is what it is and somehow, someway I have to accept it and try to live a normal life.I am just really frustrated and depressed and could use some help.Thank you,Lori Quote Link to comment Share on other sites More sharing options...
sallyannsturgill Posted May 21, 2004 Report Share Posted May 21, 2004 hi welcome to the world of dysautomia.i have only been to this site for about 2 weeks and have already found it extremely helpful.we are all here to get help not only for ourselves but for each other .hang in there.i too feeel terrible most days .im glad to here you have docs who are working with you .at first all my docs thought i was crazy .and i was beginning to believe them.feel better soon.sally annn Quote Link to comment Share on other sites More sharing options...
ethansmom Posted May 21, 2004 Report Share Posted May 21, 2004 Welcome to the forum! You will find many people here who are going through exactly what you are, and lots of helpful advice. It's a long road, but many of us have come a long way with managing our illness. It's easy to get depressed in the beginning, but things tend to look up as time goes on and it's easier to accept the lifestyle changes that come with having dysautonomia. When I first got "sick" I was just out of high school and had my whole college & career ahead of me, and I thought it was the end of the world...but now at 22 I've got a beautiful son and wonderful family, and I just got my Associate's degree, soon to move on to an undergrad program. I still have a lot of ups and downs, but overall my quality of life has improved a lot (MUCH thanks to the information I've received here at DINET) and I try to keep a positive outlook. Whenever you have questions or need support we are always here Quote Link to comment Share on other sites More sharing options...
purplefocus Posted May 21, 2004 Report Share Posted May 21, 2004 Hi Lori, I'm glad you found this forum. Everyone on here is so wonderful at helping you thru those bad days. Hopefully your doctors will find the right medicine dosages for you and you can go without many bad days. Remember it is not all in your head and you aren't crazy, that this is real and many people have this. I said that because there is people that sometimes tell me "you look so good, now what is wrong with you?" I am still dealing with the depression but it is much better. Time does have a way of helping. Stay in contact with this forum on a regular rate and it will help. Also this site is good for researching any of the symptoms that are happening to you. There is always someone here that has already been thru it and can give you hope. Paige Quote Link to comment Share on other sites More sharing options...
Shawila Posted May 22, 2004 Author Report Share Posted May 22, 2004 SallyAnn, Jessica and Paige,Thank you so much for your replies to my post. It is nice to talk with others that truly understand what this is like. I could relate so much in so many ways to your post and am so grateful that somehow I stumbled upon this site. I will be visiting regularly.Thanks again,Lori Quote Link to comment Share on other sites More sharing options...
goldicedance Posted May 22, 2004 Report Share Posted May 22, 2004 Lori,Welcome to this club of elite people trying to cope with conditions that are not at all well understood by doctors. Sometimes the road is very difficult, but with the support of your family, friends, and your DINET friends, you should know that you can always visit with us, vent your feelings, and seek advice and support.Good luck with your consultations! Don't give up! With perhaps additions of medications and some dietary changes (i.e., extra fluids, salt) and rest, you'll hopefully be feeling a little better each day.Stay in touch with us! Lois Quote Link to comment Share on other sites More sharing options...
DawnA Posted May 22, 2004 Report Share Posted May 22, 2004 Wecome! I feel for youand what yoare going through right now. I was 34 when my problems became debilitating. For many symptoms do improve with time. It takes time to find the ride combination of meds and for you to figure out your body better...but things will improve with time. I hope you get as much out of this group as I have. Ask a lot af questions!!Best wishes, dawn Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 22, 2004 Report Share Posted May 22, 2004 Lori, welcome to our forum...and venting is normal; most of us here have taken a turn doing that at least once (okay, I've done so WAY more than once )Glad you found your way here--knowing you are not alone in this can go a long way toward helping you cope with your day to day realities.nina Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 22, 2004 Report Share Posted May 22, 2004 lori, welcome and all i can say is what everyone else has. we have all been you you are at some point. i was feeling better and more validated and got shot down by two doctors in two days. so i had to come here and vent and felt much better. you don'r ever wish this on anyone, but in a perverse way, it's a comfort to know that others know exactly how you feel. we are all in this together, to listen and hopefully provide support. again welcome. morgan Quote Link to comment Share on other sites More sharing options...
Shawila Posted May 25, 2004 Author Report Share Posted May 25, 2004 Hi everyone,I really want to thank everyone for all the support and replies that I have recieved from each and everyone of you.I have told a few of my close friends and family members about this site where there are others that can relate to what I am going through. They are glad for me. It is nice to know that I am not alone and that we are all here for each other.My spirits have been lifted emotionally just in the past few days knowing that others understand and care.Take care,Lori Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 25, 2004 Report Share Posted May 25, 2004 Lori, I remember the first time I felt that support and understanding from my internet friends. It's a great feeling and I swear it's helped me get through some really tough times. Glad you're able to feel that we're in your corner. Nina Quote Link to comment Share on other sites More sharing options...
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