briarrose

Make sure your Neurologist has dealt with Dysautonomia or at least heard of it!

I don't have a diagnosis and usually don't bother to have this problem checked out. I just assume that my all of my blurred vision is either from very low blood pressure (not enough oxygen getting to brain, therefore eyes) or just POTS acting up. I never change my prescription. I went in once last year and they told me that my right eye had gone from a -400 to -325. I was so excited! But that only lasted a few days. So I just get the same script I've been using for the past 10 years. I wish the doctor's would get serious and pay attention to Dysautonomia!

Congratulations on them finally taking you seriously. You should think about writing some scathing letters to hospital administrators and tell them to get their staff some Autonomic Training. Hope you get on the right track now. Stay on top of them and if they blow you off again, try to go else where.

I agree with Emily. I hate a doctor to tell me what the normal values are and then they ignore the abnormal ones. 3 years ago I was struggling with the worst joint, bone, muscle pain of my life and my sedrate was high, around 27. My rheumatologist told me that was what he expected for a person my age 37 years old. So I just had another sedrate 2 months ago and it was like 3. Hmmmm so much for his intrepretation. AND, In my opinion each doctor is going to have their own intrepretation. Some are going to see a white count of 16 and know that there is an infection going on somewhere. There are very few doctor's that are going to say that is normal. But if you're feeling better maybe it's subsiding or just brewing to hit you harder, better to be safe then sorry. Take care Julia steph

Sally, Thank you for your nice compliment. I always enjoy finding these weird links and sharing them with all of you, so thank you for taking the time to read them Steph

When I meet someone I usually say that I have Dysautonomia, specifically Positional Orthostatic Tachycardia Syndrome and Orthostatic Intolerance. It wouldn't be nice to say I have POTS, most people that work in the medical community don't know what it is, why would a friend or stranger. It would be the same thing if we went to the doctor and they were speaking with a lot of jargon that we didn't understand because we had never heard it before.

I agree with Katherine. Cardiologist - The medical study of the structure, function and disorder of the heart. Dysautonomia doc/Autonomic specialist - (there aren't many btw that's why we see so many different doctor's) Someone that can deal with the multiple complaints caused by the dysfunction of your autonomic system. Vascular has to do with the diagnosis, treatment and prevention of diseases affecting arteries, veins and lymphatics.

I am so sorry for your sudden unexpected shock. It's even worse that they didn't include you in the Obituary, very rude and thoughtless. Too much loss in a short period of time. My thoughts and prayers are with you Steph

Last year I posted a story and a question in my mind about this. I think that the military has seen Dysautonomia for well over a Century and they still aren't aware what they are seeing. You guys should see this though. http://dinet.ipbhost.com/index.php?showtop...=soldiers+heart and if you want to watch the nightline story it's under transcripts http://abcnews.go.com/Nightline/

I agree with you Diana as I've been dealing with muscle spasms for quite a few years. They just wrote me a prescription to have a TENS unit here at home because it's the only thing that helps after several days of constant spasm.

Thx all Mi mom I love DYNA, you guys have some great information posted there and I've given out your web link many times over the past few years, keep up the great work over there. I can easily see how the conference would be inspiring and a relief for the kids inflicted with the illness, it gives them the chance to see so many others like them. So are you saying that the stories posted and everything in them are false? Isn't Debra Dominelli your president?

I would ask for any samples the doctor's office might have. I also know that some drug companies offer assistance or help providing meds you need. So I would definitely contact them. Heres some drug company phone numbers for you http://www.sepracor.com/contact/index.html If this doesn't work let me know I think I have another number here at home that you might give a try.

http://www.timescommunity.com/site/tab1.cf...id=506037&rfi=6 http://www.timescommunity.com/site/tab1.cf...id=506037&rfi=6 http://www.dcexaminer.com/articles/2005/07...smdv13tired.txt I tried to find the story about the little girl on the East coast that was diagnosed last year to add, but it's in the search here somewhere.

I'm very irritated at the way he treated her. I agree with Lauren, Definitely better to go to the Dean now rather than later. I would also go to the ADA office and maybe consult with an attorney. If you have a employee assistance through work, sometimes they can recommend an attorney and your first hour is free. I'm sorry that your daughter had to experience this attitude. I hope that she realizes this as a lesson in life and what kind of jerks are out in the world and try not to take it personally. good luck steph

It's important to talk to your doc because there can be many reasons for muscle spasms, including electrolyte imbalance. However this topic has come up many times before and you might find it helpful to read some of the past posts about it, there have been many good suggestions. I suffer from spasms all the time and I agree that it is much worse since my POTS diagnosis. take care steph

I agree with Miriam. I want you to know that we've probably all felt like you are right now. A few years ago I was ready to quit my job, send my kids to my ex-husband, sell the house and move into moms or live under a bridge Six years ago I was a part time student, full time employee and most import fulltime mom. Well I haven't been back to school. I still push myself to work, sometimes with every ounce of my being and I think I'm a pretty good mom. Having a Chronic Illness changes your life. I know it's not what we imagined and it dashes some of our dreams. But it also teaches you something and opens your eyes to so many others that struggle with their problems. I have a new found realization of other people?s struggles, whether it is with Chronic Illness or just tragedies of life. I?m glad that you?re seeing Dr. Grubb. He?s an incredible individual and the best doctor I?ve ever had the pleasure to meet, even if it wasn?t ideal circumstances. Has he sent you to see Ken (can?t remember the last name) or the other counselor that he works with. It might be extremely helpful if you could see one of the counselors that he recommends or find your own but make sure they deal with Chronic Illness. I know you feel like a burden on your family but they love you very much and it sounds like you guys have been in this for awhile so they?ve found a way to manage the finances. This is hard for me to say but I want you to know that I?m a single mom of 6 kids and my gosh it?s hard sometimes, the bills are staggering and my house payment is nearly impossible to meet anymore. I?m not even sure if I can get my kids anything for Christmas this year but we sat down and talked about it and they are alright, they?re just happy that we are all together. We are having a tough time right now but I know that it will pass, it always does. As a mother, I would rather scrape by or find other alternatives as long as my children are happy and as healthy as they could be and my kids haven?t always been healthy (but we?ll save that for another time.) If you?ve known your friends this long, I?m sure they have an understanding by now of what you?re going through. Try to have your friends over more. Maybe play some board games, watch movies together or just hang out. I know it?s tough but hang in there. You can always come to this forum too; there are many good people and advice here.  Take care Steph

What tests did you have done?

Gayla I hadn't read it all the way through so I didn't realize it would be so difficult to submit a book idea. However, I'm glad that you're submiting stories. I hope they get published and will be watching for them. I think it's a good idea to discuss a book and I love your title. That would be an incredible fund raiser possibility. Thx Steph

That is great Michelle! Perfect! I can't wait to see what some of our talented writers do. Thx Steph

I attached the Chicken soup web page just up above. Thx Dawgtired!

One more thing. We should consider making this book so it covers POTS, Dysautonomia, OI, PAF, etc. We can also establish that it's a chronic illness and maybe the fact that it does overlap Chronic fatigue by at least 1/3. Hey guys these are just thoughts of mine and don't feel obligated. I will have NO hurt feelings if you don't use any of my ideas. Let's just get them interested in a book and we can all submit our own stories. If we could get this off the ground, we could bring awareness to all of those people still symptomatically suffering out there without a diagnosis AND also help those that do have a diagnosis and aren't aware of the support forums that are available. Hope this all made sense, I'm still kind of asleep yet this morning. Steph

Gena, Steph, Mary, RQT9191 and anyone else who wants to submit ideas for FAQ, the help search or anything else that we discussed here, can we come up with a coordinated effort? I know I would really like to concentrate all of my time on a possible FAQ area that's going to be accepted here. Thx for any help that you guys can give. steph

Carmen that was very funny! You guys have some great ideas and after reading some of the stuff that Dawgtired puts down and others here, well how could we not be successful. steph OK guys I just actually went to their website and you can submit stories & possible book ideas. Lets make this enticing for them http://www.chickensoup.com/ AND, sorry tried to edit but it didn't go through but If you go to Submit a Book Title, there is a 10 page download on what & how to submit a book idea.

Melanie It's so good to see you're around. I've been wondering about you. How are you doing? Dayna I didn't realize it could be used for migraines too but I'm glad to hear that it was an alright med while it did work. Thx all for letting me know it's been around for awhile even though I hadn't heard of it. I'm glad at least a few have tried it and done alright on it. steph

Seems like we could make a good heart warming Chicken Soup for the POTS Lover book. I wonder if we can sell the idea. OR have they done one on Chronic Illness yet? Hmmm......