pearsjon

i went through years of "normal" testing. i had an mri show a 4mm cyst in my kidneys that mysteriously disappeared on the next mri. i think i would have felt passing something that size. in other words, get the films and reports and get a second opinion. you have that right. but get everything u can from the tests. i think what is going on with your son needs a second or third person to look at it. that's all i can offer. hope u get help soon.

thank u for all ur suggestions. i think i'm scheduled for bloodwork anyway, soon. i know it's not dryness or the skin would flake, and ti doesn't. plus hard to be dry in 115 heat indecies. cardiotec, i will ask about ur med as it may be similiar to the zonolan ,but i will find out. it is apparently not dys related though. since noone has it. i have lumps under the skin where they do itch for a long time afterwards, but notina bug bite,more like a lump. when isee rhumetologist i am going tomentrion it ot her. not scabies, had them before from a puppy i rescued from being hit by car. and they say kindness pays off. it didn't that time. thanks again for all the help.

i posted this elsewhere with not much response. gotta make it quick, don't have much time. i get itching spells in certain locations on my body. in singular episodes. ie, my forearm,or neck. it is so bad i have been awaken from sleep form it. it makes me feel like i want to take a knife to it to scratch it. i used zonolan(sp) and benadryl last night and still could't get it to quit for over 30min. those r topical meds 1st isrx and 2cd over counter. i poked my skin with my nails after 4 applications of each so bad that i have nail punctures in them(left forearm last night). i have levido reticularis, so trying to see hives on my arms is impossible. does anyone suffer from this? eer heard of such? asked a doc on time he said ther is no way that only one part of ur body would itch like that. and my response was tell tht to my foearm dumb***. hope yall can help. thanks

i wish i could give u amagical answer, but i can't. over the yrs i have just simply adjusted to them being there. i am going to venture and say u have active sympathectic nervous system? when things start to "move" i say sit down, or lie down. it does seem to help a little or better yet 4 the moment. bending over is the worst thing 4 it too. so try to avoid it. singing is also very bad which i love to do and i'm not bad either so i fo it anyway. but u will basically just get used to it. r u hypo orthastatic? my bp runs very low most of time. i believe this plays a factor. i'm on midodrine and clonidine to try to raise it. low hr? i do mostly aaround 50. probably part of it. i hope this helps some. i wish it was more that i could do. u r nnot alone.

i know exactly what u r talking about. white lights? flying by? or somaetimes i describe them as, u know when u were in school and they made u stare at something for a couple of min and u could see it even when u weren't looking at it anymore. i don't now if this is the same thing as u but i suspect it's close. i happens to me all the time. sometimes for days on end. if not those ones , then i see colored spots, i can see through them, but they are colored. or i look at things or people and they have what i call a halo around them. if any of this makes sense to u then u r talking about pots related symptom. that's what my doc said. hope this helps.

i have a feeling of something stuck in my throat. habe probs swallowing. that's why they r talking strecthing my esopahgus cuz of it. maybe see gastro doc for endoscopy.

when on a good day everyone says you don't look good r u all right/ when ur mohter has to help carry you and ur 37yo ur 6yo daughter asks u every night if u have salted ur food i love this post , keepp em coming need the laughs, just can't laugh makes my head hurt, but i can still smile. or when u discover a whole gallon of milk in ur pantry and the can of peas in the fridge. when u can't swallow all the meds to keep u swallowing u base the color of clothing u wil wear today to match the color of ur green skin

dr's getting to little from insurance to make money.lol, iam almost rolling in my chair. i look at what my ins. pays my doc(not dys speciaist) but others, and if they would charge what the ins. company gets to pay. we could all afford to go to docs. why is every visit to a doc a classv visit(which puts the most money in their pockets) when they only spent 5 min wiht you. it is the only profession i know(ither than weather) you can be wrong 90% of the time ,have no recourse for being wrong and still get paid and charge what you want. i asked why the mri costs so much 1 time, my answer, well we have to do maintainance on our machines. i was looking at the last time it had been inspected and it was6yrs prior to that. give me a break. and don't get me started on dentists. i have never seen a poor doctor and that's all i have to say about that.

i have posted about this on another forum. i also have this, it feels to me like blood is running down my legs or arms, wherever it decides to happen. i mean i literally have to look to see if it is blood even though i know it is actually to cold to be blood. don't know why. cannot give answers, can only chime in me too.

thanks for the welcome, all. i will investigate what u have told me about and appreciate the info. as far as i know i have never been checked for periodic paralysis. i am in florida. north flroida . i am going to look for something close to here or maybe UAB. i have asked several times to read report from EMG at tulane,but still have yet to see it. i have always felt there is something more going on. u are the first people i have come across that can even back up the spells as being a valid problem. i have walked into neuro's office limping so bad (kinda like i had a wooden leg) and have them write in their report "no gait probs". i was floored. thanks again for the advice and validation.http://dinet.ipbhost.com/style_images/1/folder_post_icons/icon6.gif

mri's showed mild stenosis. with 3 bulging discs atlumbar and 5 in cervical. or vise versa. still said unremarkable. i had emg at tulane that's where they saw something they couldn't explain. never got the complete report on that one. when isay draw yes it does it on its own. if i pushed it down i could make it do go down but it hurts. i have muscle spasms everywhere including my intestines which i can feel. doc is niether just dysautonimia specialist. all the nuerologists i have seen say they cant find anything. one told me it was from altered weight bearing. i weigh 115 lbs. i mean come on. and when he said that i hadn't been using that leg inyears for full weight purposes, it hurt to bad. but it all comes and goes. i always thought it was MS because of that reason.

thanks for the welcome corrina

sorry i wasn't specific enough. u asked for it. paralyis in my toes,meaning i could not make them movein any direction if i wanted to. i can feel them,ie if u touched me i would know but i can't move. there is also swelling(non-pitting edema) when this occurs all the way up my left leg. left sided mainly. sometimes it happens on the right side but not as often. left side arm doesthe same thing( swelling, paralysis) it draws up to my chest at the elbow and i cant move it or my fingers. i have had every test i know of and the comments r always unremarkable.docotrguest will understand that lingo. ECG showed something but they couldn't explain it to me or themselves. that was the answer i got. i have POTS,OI,NCS. and now thinking fibromyalgia. my dys doc is specialist and feels some of it (paralysis, swelling) may go away. but hasn't yet. potasium seems fine on all tests, but they have told me it is a hard thing to catch at the times it goes low. and yes the weakness is there. sometimes i am paralized(as described above) all the way to the top of my knee. my whole left side has lost muscle mass and been getting weaker and weaker over the last 9yrs. i wasn't diagnosed with dysautonomis until may. but the paralysis and swelling began ot onsetof probs 9yrs ago. was when i knew something was wrong, but noone could tell me why and really still can't. if u need more than this please feel free to ask specifics. and thanks for helping me. and yes it comes and goes.

i ahve read the previous posts about paralysis, and have a few questions. mine seems to be limited to my left arm and left leg and toes. not my whole body. is this anything like yall r going through or is it different?