lillybits

ok thank you! that makes sence. they gave my a few dx and then sent me on my way.. i felt like i just got dropped pff at sea ha ha . az is the last place we lived that i can remember being healthy.its been a long time.8years since we were there last. I wrote to the autonomic doc i saw at mayo rochester and asked if he could send a referral out there for when we move...wish we could move now but we are waiting on my ssi.. hoping i get approved i dont know if you can move while you are waiting on a decision....

i can ride 7 miles on a recumbnant bike hardly break a sweat but end up drenched when i go to tie a glove balloon....

i am still on prescription d. but the gel caps or gummies are more easily tollerated than the tabs. might want to try that out and ask your doc to do a vite screen on you.

ugh same here . I am skinny as can be but then my belly is usually always distended.. uncomfortable to say the least.. cant pass gas or anything else for that matter.. its crazy how things that seem completely unrelated are all part of all this madness:)

thank you! the mayo out here in minn gave me diagnosis but no treatment plan. i was diagnosed, given a script for an abdominal binder and midodrine with no follow up and he sent me along my way....looking forward to hearing about how it all goes lemons!

does the apin go into your toung or gums at all? I drink ultramweal 360 and add two scoops of maltodextrine to my almond milk to keep my weight up. I was also found to have trigeminal neuralgia. which can be reduced by anticonvulsants. i just found out my throat is damaged by gerd also. and these things arent too bad...i also have lots of food allergies and sensativities...i hope i am making sence....

We are looking at moving back to az after I get stabilized and We were wondering if there were any good docs out there?The last state that we can remember quality of life being better for me was in az. the more I read posts and research I am learning that I have had this much longer than i had thought. I thought it was all in 2006 but aai had lots of warning sighns that something was very wrong a long time ago. It would be an added bonus cause my two step sons live out there still!

oh wow! I have had 3 pelvic surgeries the last one was a husterectomy when i was 28I had excessive bleeding, systs and adheasions along with endometriosis. i might have had this much much longer than i had thought. i had been tild in my late teens that i probably wouldnt be able to have kids because of the abnormal paps.....

i looove my veggies and fruits! dont care for meats, whole grain and mostly organic. I will try the flack seed oil. i add the seeds to my smoothies and muffins. tried casteriol hard to keep down and caused horrible pain. more so than the regular laxitives. myralax has been my best friend for a couple of years now. but I am having to incease my doseage of it all the time.

i have been allergic to dairy my whole life so i stay far far away from that. I have to take 3+ doses of myralax a day to get movement in about 3-4 days... i dont take any nausia meds. just for regular pots symptomes, midodrine seems to slow my gi tract down more.... i lose weight too quickly to stop eating things high in carbs ....thank you all

we are going to go out and visit out in southwestern ill, fl and az to see where i do best. we have family out in all those states. just need to look into doctors also.

I had an upper endoscopy and colonoscopy done to try and find out what the heck is maiking it so freakin hard to go to the bathroom without having to buy stock in myralax...he he ... the only thing that they found was my throat is erroded by acid which i had no clue of.... thought that part was fine... but my question is why and what is going on in there?Anyone else have issues with this and what helps?

thanks, kim

thank you lemon!same to you!

ha ha people hardly ever call my phone any more because i dont hear it or feel it going off most of the time.. doesnt matter what pocket i put it in!

I have always gotten hot or cold easily

heart stearted racing in 2005 accompanied by passing out- broke a vaccume that way ha ha

that went on for a few years a few dizzy episodes

complex migraines started in 2008

ice pick type head aches in 2009 that went in to trigeminal neuralgia

luekemia in 2009

2009 cronic sinusitus

2010 pernatious anemia

2011 ncs

2011 vite d diffiancy

2011 raynauds phenominon diagnosed but have always had super cold hands and feet

life long history of ibs and food allergies

2011 pots diagnosed at mayo in minn** passed out with a patient last day of work in march

2011extreme muscle weaknessand fatuige

2011 failure to thrive---i am beating that one!

2011 myasthinus gravis sympotoms

32 now and hoping things stop going down hill sometime soon

working out as much as possible but still unable to make it thru more than a couple hours of being upright at a time

i am diagnose with both pots and ncs. ny neurologist said that ncs is a little different from pots cause it is just your blood pressure dropping randomly. I pass out sitting up, standing and sometimes even laying down. there isnt any change in my hr at those times but when it is pots my hr goes up and beyond 170 and down i go. I got a mixed bag kinda deal....

7.5 and 7.7 pre pots

i was switched to norvask it helps some but other than that i sit on my hands and feet, have to keep my ears covered anytime it gets cold, put hand warmers in my shoes and gloves, and then my regular pots rutine . It sometimes seems to help by shaking out my hands. it gets worse when its cold out side or if i get stressed or sick

we were looking at moving back to az but werent sure on it. I dont do well in the heat or cold really! HA AH but we figured the mountains in az might be nice. we lived out there for 18 years before.. but now we are in wisco and see the mayo docs in minnasota.. we dont have any follow ups there tho.I know there is fort Whachuca(sp?) in the southern part of the state .

i drink about 76 oz. 2 -32 oz bottles of gatoraide, and two 12 oz bottles of water. not including my coffee 12 oz thru the day....

well hello and welcome! it took a few years and monthly trips to the mayoclinic in rochester( usually a week or two at a time there) to figure out things for me. there are new symptoms that still pop up and seem totally unrelated all the time. I went from having 14 didderent diagnoses to 7 because fo the two dysautonomias I have. But you are definantly in the right place! Everyone on here is very supportive and will help you try and sort things out.have they tested your d levels??

if i am on the couch i will try and slide over to try and get comfy. i slept for 13 hours last time that happened... it would be nice to be able to make it to my bed when that hits...

my husband wants to move away from wi also. i have both heat and cold intollerances. so we are looking at the muontains in az or sandiego area..his family is out that way. mine is all up this way. family being close can be a blessing if they are willing to help even if it is just support or a curse if they add stress...

on the bike i can keep my heart rate around 170 on a recumbnant bike but not so lucky on the tredmill

Any time my husband and I start talking about my health it usually starts an arguement. Seems like he doesnt think anything i am doing is good enough. I need emotional support not a what i should do list. breathing is hard enough for me on most days....I cant dissagree or get frustraited with this to or infron of him other wise he just shuts down and shuts me out.... I do the salt, fluids, excersize, meds and antidepressents because he thinks its because I dont deal with stress is why i am sick.. how does everyone else on here work together as a team???

nothing usually. sometimes iv but usually say i need to talk with my primary or neurologist... so frustraiting