shoegal

after 2 years of endocrine testing I'm back with nothing, I have low ACTH/cortisol but they say it's fine. If my severely low BP is linked to dsyautonmia only then why the low ACTH/cortisol?!? GI, Cardio, PCP want endocrine to treat me, they refuse, I'm back to square one. My GI has been useless. Since Aug or so I've not had normal bowel movements. With no testing he says I have IBS, he knows nothing about autonomic issues. He hoped endocrine would help out, but um no. I have to use enemas/suppositories in order to go, that doesn't always work, have been to the ER too many times with a back up of stool. I'm struggling as to what to do, low blood sugar, constant migraines, no energy. I'm not old enough for so many problems. Any pearls of wisdom?

well miralax already gives me enough bloating and doesn't do anything anyway. speeding my heart doesn't sound fun but energy, well what is that?!? :-)

i have some of the liquid script version, what side effects do you have? i've thought of trying it for a while

would the script strength carnintine be better?

been a week and no sign of it, wouldn't it change the colour even slightly?

The GI's office says if I'm going but not white that is OK

I have had no change in stool colour at all the GI"s office said to ring the ER

been 72 hours and nothing white, how much longer before it comes out? should I be worried?

I went with pelvic pain, increased PVC's and just feeling yuck. I've had low potassium 50% or more of the time I've been to the ER with cardio stuff. My old PCP did a few levels and they were OK. They want me to come back if I have weakness, tachy, numbness, palps. I have this stuff all the time and had it before I went there!

At the ER my potassium was 3.1. They want me to have 20meq twice a day for a week then recheck. I have had low potassium on many trips to the ER. I eat a lot of food with potassium every day too. What confuses me is the list of "if you get this come in" symptoms, as I have all of them already. Anyone with tips on when to know if it gets lower? and how you treated your issues?

3 times a day miralax? wow does it help?

shocked you went back to him! did he report you to anyone or just say that? that is awful :o

you get the full body shakes too??? wow I'm sorry you feel so bad, I totally get it. I wish I had a magic wand you could borrow

thanks everyone. Still struggling. Today though I finally had a few movements without having to force it, but it was after twice daily mirlax and was unpleasant. It's so airy and "fluffy" for lack of a better term, not sure why it's such a hassle! Will look into the other options

what about homeschooling? you can also do public school at home via something like k-12

thanks for that! I think the miralax is working as far as the stool is very very watery (airy more like it) but how does the body then get it out? I shouldn't have to do a suppository or enema to make it come out should I?

I just posted about GI issues myself. I hadn't seen this thread. I need to see a GI but doubt I'll get tests done given I have no insurance. I'm already on daily miralax and still not going (suppositories aren't much help, only enemas and don't work every time) Everything is soft, it just isn't being pushed out it seems. Any ideas?

I have had alternating diarrhea and constipation my whole life. Feb-April I had diarrhea april-July I went once a week (not fun) and now I just can't go. Miralax doesn't make me go, even an enema can result in nothing. It's a daily ordeal by now and I feel bloated and yuck. Is this an autonomic issue? I know it's liked to mito which some folks have on here that I am being tested for. I don't have a GI yet and no insurance. I'd love to know if others have this issue and what do you do about it? I think I need a stimulant laxative. I get such bad side effects from things though I'm scared to try anything

I get this after tachy episodes, no one knows why, baffles them, do you know what causes it?

I go to bed, lay down, have some irregular beats then shoot up to 110-130 (from 55) feel scared, like it's pounding, then it comes down a bit to 100 and the severe shaking starts, like seizure like any ideas why??? what is this shaking caused? what causes it I'm tired of being scared every day, how do you tell yourself it's OK?

it's still driving me mad, any ideas?

I guess some it depends on how much your pupils restrict as well. I have serious eye issues so they like to see more of the optic nerve. They can't fix anything though so I am putting myself through the trauma less and less.

the first time I had a reaction I was told I was nuts, the 2nd time they used something different and I did not react. I am due a dilation but so scared, don't know which one made me sick

have they tested you for a metabolic disorder?

is this common? chest and arms and driving me nutso. more at night than during the day