Tarastomsgirl

I'm on nothing at all. I do wear compressions from time to time but thats it. I haven't found anythign to work for me at all. I made it through culinary school (yep over hot stoves a kitchen over 100 degrees every day) with no meds.. Of course now I can't get out of bed but it was the best year of my life!

I had the worst time getting of prednisone. It took me months to get off of it I had to drop .05 mg and it would take more than a week to do that. I was only suppose to be on it for 5 days.. took me almost 5 months and in that time I also went into adrenial failure, then adrenial crisis and had to be given shots twice to stop it. Once I got down to about 15 mg I was having sores all over my mouth and on my hands. Tachycardia, tremors, confusion, studdering, twitches etc were all my syptoms coming off

yep I range in the 96.4-97.5 range consistently. Every time I go to the ER or doc I'm assured to have it checked more than once cause they think its wrong.

Thanks you guys I'm glad I'm not alone. Truthfully no I haven't eliminated dairy completely and I've tried as best I can to stick to mostly whole foods (altho I have had some things that aren't whole foods of course) The gluten ataxia is interesting. I do believe some of our issues come from Gluten like I said when I went off of it the first 5 days I was esentially symptom free. I spent the last year in culinary school where lets face it not gluten free and its all in the air. The day before I graduated I was given the "flour salute" in the parking lot and had flour thrown on me from all directions. Got it all up my nose, in my eyes mouth etc. I felt horrible after that and though omg I've just had gluten overload so when I cut it out I got better. Then I wake up one day and im just awful sick. I thought I had been cross contaminated so I was extra regimented about keeping my things separate from my families to no avail. I really think this is an autoimmue issue mostly I have sores on my legs..well not sores it seems I got bit by a bug or scratched myself and they took MONTHS to heal, and they didn't heal right. The one got so bad even after I kept putting neosporin and peroxide on it that I had to get stitches to close it cause it turned into a hole on my leg. I had it biopsied which didn't have anything to write home about. It happen again this past week I've had this bite or scratch and I could tell the past month it wasn't healing right. I ran my finger over it and i could feel a bump in the middle, When my fingernail caught a whole white hard tube thingy came out and then puss behind it. Once again a hole was left which I started with the peroxide and neosporin and it looks like its closed but I'm now left with a dark purple looking ring.. its all so weird!

yep I agree adren. surge..I get those too I hate em and they scare the crap outta me. I'm fine one second then bam I'm hot and feeling funky and off and then I never feel right sometimes for the rest of the day I have to sleep off the funk.

Steriods are considered "miracle drugs" because they help just about anything. Cancer patients are on ridiculous amounts to make them feel good. My friend had lymphoma and I swear he was better than I was half the time . Downside he never sat down or slept but my god could he eat. Steroids are also very dangerous because they hide the issue at hand. They suppress your system I have scars on my legs from getting a cut that turned into a pinky fingernail sized hole in my leg because my immune system was so depressed from the steroids. Doctors should avoid them at all costs but hand them out like candy. They can kill you easily(they almost did with me)

I've been gluten free for almost 2 months

thanks. I do have someone going with me I'm just concerned on how long this is gonna take! I hope it doesn't take a week. I go in on Fri morning and from there I don't know. I live 7 hours away so staying a week isn't really do able for me esp because I have a 2 year old daughter and my husband cannot take off of work (Police officer) at all during the holidays!

My dysautonomia started after I went to Mexico for my honeymoon. I never drank the water or ate but less than 2 weeks after I came back I was so sick I couldn't get out of bed for 5 months.. *que in undiagnosed dysautonomia* they think i caught a virus while out of the country that trigged all of this in me

I'm the oldest of 4 and my symptoms started when I was 22

thanks , yah I'm in that REALLY bad phase right now and its been going for a month. I feel terrible cause I have a 2 year old so i can't stay in bed and my husband works nights so he sleeps all day! So its all on me and I feel like the worst mom cause I can't take my daughter to the park , or even out to the lakes so she can see the ducks. I just want to lay in bed all day and yes some nights when she goes to bed its all I can do to get up and pee and not be afraid my husbands gonna find me in 12 hours when he gets home busted up and bleeding passed out in the bathroom all night! I'll try some coffee see if it helps. My gf recently went to Mayo and the doc she say works with Dr. Grubb. I guess they've found Gatorade is kind of old news, the thing to drink now is Smart Water and put bullion in everything (liquid) like every day eat a bullion soup.

I had anaphalaxis (sp?) *** Doxycycline and a severely bad reaction with prednisone. I am also allergic to GI cocktail and unless I'm taking a childrens dosage of most all medications I feel terrible and its usually too much.. I tell docs this all the time in the ER or when I'm new and they never listen to me they think I'm nuts.. They listened tho when I went into adrenial failure on only 10 mg of prednisone

HM mine is definetly a vibrating feeling, through my whole body ..Almost like if you were laying on a vibrating cellphone. Sometimes I swear my teeth are gonna chatter but everyone swears I'm not!

I'm going to Mayo Jacksonville in 6 weeks to see Dr. Kusomoto and I'm hoping he'll refer me to someone else for this undiagnosed but very prominent autoimmue and or connective tissue disease I have. Is anyone willing to share how much they've spent seeing the docs? I have insurance that pays 80% but with me not working right now and my husband the sole income provider for myself and my daughter I'm afraid this is gonna break us (esp cause I go the week of christmas!)

I seem to be having the worst time this past month. I cannot for the life of me get rid of this body weakness. Its esp bad in my legs and when I say bad I mean BAD. Like gonna collapse all the time feeling. Even my butt feels weak. Also I have constant body vibration feeling. No one else sees it or feels it but I feel like I'm laying on a huge vibrating cellphone all the time! Anyone have this, anyone know what helps? I seem to be having boughts of high bp (130's /90's) which I've never had before I usually run in the lower 100's over 70's. Its all so weird! I'm not on any medications either to make this happen