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pooter18

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About pooter18

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  1. i have the same issue.. i believe my levels were over 1300 when i went to mayo.. and i believe even the high level is about 400..my doctor said the adrenal tumors can be so tiny that they cannot be detected and usually there are several of them.. they cannot be removed or anything done about it...but due to my symptoms even though they cannot see them they are almost 100% sure i do have them...i was put on klonopin due to the high levels and they are down around 750 now...so i dont feel as anxious..but still have good and bad days..but with the tumors they make my heart so touchy for lack of a
  2. when i went to mayo i was told drinking to much water tea coffee can cause you to be dehydrated because they do not have salt in them and the more you pee the more salt you loose and your not replacing it by drinking those..i was told to drink G2 Gatorade and V8 ..so i drink a glass of each during the day along with the water and tea (decaffeinated only) and i feel much better and my labs have been great..i also eat extra salt on my food and sometimes will just grab a salty snack during the day for a just in case..my blood pressure readings have also been more stable. .so even though i was dri
  3. i also went to mayo in Rochester 8 years ago..the worst part for me was they took me off all my meds 3 days before i went they said they wanted me as sick as possible to do the test so they could get accurate results without the meds masking them..not sure if they still do this..i ended up in the ER the night before we left the withdraws were horrible..i had so many test done couldn't even begin to name them.. they may add to yours depending on what they find along the way..the sweat test was the worst for me i did not complete it..i cannot tolerate heat or humidity and i could not breath i tr
  4. my feet are really numb..and i had a doctor poke me all over with a safety pin to check my nerves didn't bother me at all..he finally stuck himself and said yep it hurts..my husband just laughed at him..the only place i could really feel it was my face..my legs also get numb if i sit with my legs down even while riding in the car i usually have to put them up on the dash..
  5. i also get a headache and nauseous with perfumes..if there is any way to get away from the person i will..the worse is someone who smokes and then puts on a ton of perfume to try and cover up the smell..i am extremely sensitive to smells
  6. i itch constantly all the way around my jaw line feel like taking a brillo pad to it... !!!!!!!!!!! sometimes my arms and other areas but always my jaw ....drives me insane have tried just about everything to calm it down..wish i knew what was causing it ..no rash or bumps or dry skin just itches ...weird
  7. i have a old phone no apps or alarms etc...just a lot of sticky notes...LOL i have tried to use the new phones but i cant remember how to use the thing even after being shown several times.. way over my head and memory capabilities unfortunately my memory fog is horrible ..i wish my brain would work gets depressing
  8. i have a cane ..and i have a cane that has a seat on it..has come in handy many times..i also have a walker with a seat..and a regular wheelchair and a motorized wheelchair..depending on the day i have lots of choices..i have learned to get over what other people may think just by looking at me..i know how i feel and if i push myself i set myself up for a serious attack and then i cant do anything for days..do what you need to make your life liveable and bareable
  9. i also do the iv therapy 1-2 times a week but i have to go to the doctors office i so wish i could do them at home ..i also dump my water and salt through my kidneys..i feel better after the treatment for about 2 days..i also cannot drink enough to keep the fluids in me i need so i drink more G2 and coconut water and V8 to off set the IV therapy..and keep my salt levels up..it is a never ending pr ocess and each day is different i adjust as needed depending on my heart rate and b/p..with my insurance going to the doctor office and it being an infusion i pay no co-pay and nothing for the IV..t
  10. i have learned the hard way not to push myself ..i use to do it to keep up with everyone else so i wouldnt hold them back..but i have learned when my body tells me enough is enough listen..sit take a brake let the others go on..use a wheelchair or electric chair if needed..i just broke down and bought one..i have 19 grankids and would love to go to the zoo and other places with them but always declined because i knew i could not do it..events also make me nervous i never go by myself and i always go with someone who knows my limitations so they can help me if i get in a pickle..i always carry
  11. i will definately check into all of this i wish i liked avocados may have to learn to like them...i will find out tomorrow more from the doctor but i will ask about the senna ..my small intestine seems to be fine..its the large intestine that everything backs up in..even when i drink a bottle of the magnesium sulfide for most people it works in 1 hour for me over 24 hours and that is combined with duolcolax also..and i usually have to do it 2 days in a row to get some relief..depends have become my worse friend LOL i hate them but i am so afraid if i am out in public which is rare anyway due t
  12. i have troubles with anxiety also..at mayo they found my norepherine levels to be 1275 i believe in a normal person 400 is high...(don't quote me been long time since i looked it up) ..they finally put me on klonopin and it droped to 725 which is still high but better..i think pots messes with a lot more things than they realize..my anxiety is better i still have some bad days..plus when my heart rate decides to race it increases the feeling of my anxiety..constant battle to keep everything stable..yeah right i dont think i have had a stable day in over 10 years..i guess as stable as we can fe
  13. i got mine the first time on my own no lawyer..one of the lucky ones...and it was before i ever went to mayo..but my doctor was the one who told me to file and i had pretty good paper work...even after i was awarded disability due to my age at the time they refused to give it to me untill they reviewed my case again..which made me mad because i lost my house due to the extra two months it took..but again they gave me the disability..they send me papers every 3 years to fill out..and if they want to review your case they will contact your doctor..they have not done that to me yet.. again i usua
  14. i will definately discuss this with him thursday when i go..i am just so tired of not being able to eat or go to the bathroom that it is effecting my quality of life at this point..when it won't come out makes your body toxic and i am always nauscious..thanks
  15. i gues the proper diagnosis is MSA- am looking for someone out there that has autonomia systems atrophy /systems failure that i can talk to to get some information from..i was just diagnosed with this 4 months ago..i have several things giving me problems...my digestion is the biggst problem at the moment i am on my second round of sitz marker pill test to check motility which is horrible..the first round all 24 were still in my colon not a surprise since i cant go to the bathroom even with tons of medications.. and so far with this second test all 24 are in my colon as well..go to the GI doct
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