all4family

Hi Maxine, I am so sorry to hear about all that you are going through. And I hope things improve for you soon. I am new to this site, and to learning about dysautonomia, and I do not know about the drug you are going to take. I did have terrible reactions to different benzodiazampine drugs, which are the same as Versed. (at least that is what I read) For that very reason I did not do a colonoscopy I was supposed to do because of the versed they were going to use, and when I asked the Dr to use something else he wouldn't. So I really don't have any good advice to give you, but just wanted to tell you I would be thinking of you and praying for things to turn around in your life. It always seems when we are strong enough to do these kinds of things like tests is when we don't do them. Maybe we figure I feel ok why go through it. And when we feel really bad is when we have to be faced with doing something more to our already fragile body. I hope you will start feeling better very soon, and the test will go very smoothly. healing hugs to you. Suzy

Thanks for asking. I am hoping they won't give me any medication, but I really would also like an accurate test, and know that if it is not positive something is wrong. I just know I will go in for the test, and it will be the one day of the week I feel great. But I guess either way we will have to keep looking, because there has to be a reason for the positive antibody test. I'm glad to know I'm not the only one with the phone issue. I find myself yelling because I have no voice at a lower level, and it is exhausting. And to think I used to sit on the phone for hours and talk about nothing! Now people think I don't want to talk to them, but I just can't. I also lose my voice all the time. My kids laugh so hard at me and call me minnie mouse! Do you get this? (the voice not the teasing..haha) thanks for sharing hope you have a good day. Suzy

If you don't mind me asking what insurance do you have? I go to the mayo clinic, and at first my insurance didn't cover it, but I was able to swithch. unfortunatly had a lot of previous medical expenses, and a loss of income. When we couldn't pay I called the financial office, and they told me to just keep coming to my appointments. I said even though I can't pay? And she said yes. I only had a couple months untill my insurance changed so I just delayed all my appointments, but I do know that they will work with you. See if you have any other options on your insurance to change insurance providers. And call and just talk to someone about maybe some financial assistance. I know they are really great there, but I go to the one in AZ. Good luck. Suzy

Hello everyone, I'm new on this board, and relatively new to knowing about dysautonomia. About 4 and a half years ago I became sick. (I have learned to say that because trying to explain how I became sick takes to long. And no one ill sit there that long!) After a bout of waking up with extremly high blood pressure 186/112, numbness down one side of my body, and very heavy pounding in my throat, I drove myself a half hour to our local ER. Where my BP was taken again. Still the same. Two nurses stood on either side of me while they prepared a room for me. (I now realize they were waiting for my heart attack, or stroke which never happened) By the time the night was over my bp had returned to a much more normal level, but still high for me as my bp had always been very low. usually 90/50 to 110/60 max. I didn't know it at the time but this would turn into a almost 5 years now nightmare. The next day at a regular pcp visit, it was a nurse practitioner which I think was fairly new. I asked the question "Could this be from anxiety?" Well I don't think so, but I will give you these, just take them whenever you feel bad, and it takes all youre cares away. I took those home, with a beta blocker and instructions to take an asprin a day. Now remember I usually have low blood pressure, and this was a fluke thing in my opinion. But never the less I took these medications home, and the next day began taking them when my blood pressure bounded up again. This time not nearly so high. After taking all these new medications I laid down in bed for 30 minutes, upon which time I sat straight up in bed, clutched my chest which was exploding, and had my husband rush me to the hospital. This continued on changing medications, being told to call 911, then being told not to abuse 911. having a racing heart of over 170 and an eratic blood pressure. When I realized the medications were causing most of the problems we found one that seemed ok for my "self diagnosed anxiety" wish I had never taken it. after about 6 or 7 months on it had lost 120 pounds from vommitting 50+ times a day on most days. A good day was about 20 to 30. Was now told I was anorexic! Anyways. Not trying to make this a long story. I got off the medication, and slowly began improving. I never did return to how I was in the begining, but was hopeful. At 3 years off all medication I had to have some dental work done. Having found out with my testing that I had an aortic valve insufficency I had to take an antibiotic. So I took one, and had the numbness. went to cardiologist was given benadryl. went home half my body had swelling in strange places including my ear which was diagnosed as an ear infection. Although this doesn't explain the swelling on the rest of my body. took ear drops, and by this time was back to how I was in the begining which was very sick with eratic heart rates and blood pressures. vommitting losing weight, visual and speech disturbances, and the list goes on and on. It was only made worse with the testing that was done. Hand ct with dye and stuff for "allergies" had mri with gadolinium. made my muscles so rigid I couldn't move and could barely breath. Once again Drs could find nothing for a diagnoses, and were trying to say I was crazy again. So I went to a specialty hospital where they ran a bunch of tests on me. There we found my electrolites were very dysfunctional. low potasium and magnesium. Had secondary hyper parathyroidism. So walla! I would take some vitamin D, and other stuff, and I'd be better. Went home happy to have some answers....until A couple days after my last apointment my GI doctor called me and said do you remember I was running a test on you that tests for antibodies to cancer and tumors? Called paraneoplastic syndrome? Well you tested positive for it. She then started explaining that I would need to see a neurologist, and have further testing done. I really can't remember everything she said but she did say it would explain my passing out episodes. I don't know if it explains my abnormal eegs though. So I hung up the phone, and realized I didn't know the name of this thing. I looked up everything that sounded like paraneoplastic syndrome, and was horrified by what I found. I called back, and they said that is just one thing that this test tests for. That is why we need the neurologist to evaluate you. she gave me the name of the test which is ACHR.neurol.gangl.AB. So looked that up. Didn't like what I found there either. All about paraneoplastic syndrome. I knew she said it is a nerological autoimmune disease, so I looked those up. Thats when I found information on dysautonomia. I started reading this and realized this is exactly like me. I had a few months to wait for more testing due to insurance. I did get paper work during this time. Which listed as posibilities for this test were :dysautonomia, some delayed gastric emptying thing, and paraneoplastic syndrome. Well I waited my time to go see the neurologist, and just went this last monday. I guess he noticed I had some problems with my speech, which really is frusterating to me. (I had a friend of my 12 year old daughter ask me if I wore a tongue ring. I don't) I was scheduled for speech pathology therapy visit, autonomic reflex screen, and a video swallow as my high resolution ct scan showed a dialated esophogus which they said goes with the delayed gastric emptying, and dysautonomia. I did a breathing test which was ok except air trapping, and the fact that after all the intense breating I fell out of the booth and almost passed out. At the end of this test she hooked me up to a pulse oximeter which I knew would be interesting. I began going very slowly up and down a step, which my hr almost instantly started climbing. in less than 30 seconds I was at 135 then 139 where she determined my oxygen was ok, and I should stop. I know on the ars test one part is the tilt table. I have a hr watch at home, and have done laying and standing hr. It is usually in the range of 58 to almost instantly 112 108 etc. (it's not a continuous running one) but there are times when it doesn't do that. Or when it goes high, but comes back down to 90 or so. I really don't want to take any medication as I have severe reactions to most, and am worried my heart won't do it's usual. I have taken nitroglycerine before (on one of my many trips to the hospital) and although I got a migrain my problems didn't last for months or years after having taken it like with some other stuff. I am very worried they will give me the medicine on the tilt table test, and will be sick bad (almost completly bedridden) for another year. Well I said I didn't want to make anyone listen that long, and look at all I wrote. I am sorry. Believe it or not that was my shortened version. I tend to be long winded, and due to being sick can't do that outloud anymore, but still can on a keyboard. I appologize for the length of this. Best wishes to everyone on here for all they are going through, and I hope that someday there will be a better solution for this horrible life robbing illness. If anyone has any advice or suggestions for me they would be appreciated, as I have only learned about dysautonomia a couple of months ago. healing hugs to all , and thank you for listening, Suzy