
mae
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0 NeutralAbout mae
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- Birthday 10/16/1978
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Female
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Indiana
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LOL Sorry I'm not a Poll expert yet Firewatcher!!!!!! I'll be there soon
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I like doing these Polls . I answered #7
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Thanks Firewatcher thats what I thought. And thats where I read about the free standing test from a doctor that does articles from Vandy. Hope I don't have to go all the way there Mae
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Sorry your feeling bad and frustrated. I do understand , I go through it daily and push and push and break once in awhile. LOL I remember the last time I tried to go to the movies with husband back in October 08 it was my B-day we went to dinner 1st and I was really proud of myself by time we reached theater I just gave him a look and he knew I couldn't do it . I know he was disappointed because we have 2 small kids and never get out much, but on the way home we stopped at a video store bought a few movies and snacks and turned the living room into our own personal lay down theater. I try to p
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Say you do have tachycardia when standing and B/P necessarily doesn't drop much how do they determine You have POTS. Why is TTT necessary if your increase it heart rate has been documented from basic exam multiple times? Does anyone understand what I'm saying I've read on here before you don't need drop in B/P for POTS DX and all of our doctors know we have tachycardia from standing so whats the BIG Mystery? This is really directed at those of us that don't pass out. If you don't pass out whats the point in TTT? The crazy doc I had said mine was NEG. because I didn't pass out well thats not o
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When I 1st got real sick I had 13 small bruises up and down my legs for no apparent reason. I get them once in awhile now but not as severe. Mae
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Just Got Compression Hoses Today And Have Some Concerns...
mae replied to mae's topic in Dysautonomia Discussion
Thanks the box says 20-30 so I guess I will get something less constrictive I know for sure they were too tight even based on your comments these definitely were not helping me. She did do the measuring correctly I just think that idiot cardio didn't really know what I needed . I may wait until I go to Cleveland and have her write me the proper prescription because I don't want to keep getting hoses for my insurance to cover I can't use these were $ 115 dollars and can't take them back and never even wore them but 5 minutes. Mae -
Just Got Compression Hoses Today And Have Some Concerns...
mae replied to mae's topic in Dysautonomia Discussion
I forgot to ask an important question.....The doc prescribed medium compression for me the fitter called back and said since I'm so petite maybe its too strong. What type of compression do you all use ? -
Visual Snow - Sensitivity To Neon Lighting
mae replied to ramakentesh's topic in Dysautonomia Discussion
I'm also very sensitive to lights and have many visual symptoms from computer screens, reading words on the television then focusing on the picture, cannot drive at night due to pupils not adjusting to oncoming headlights, symptoms are always worse in stores with the fluorescent lighting. 1. Do you seem to pool or have you been told you pool in your hands and feet, stomach or everywhere? I pool everywhere except chest,face,back 2. Do you suffer from cold feet and hands similar to raynauds syndrome? Yes 3. Do nurses have trouble finding a vein when trying to needle you? Yes they poke numerous -
Just Got Compression Hoses Today And Have Some Concerns...
mae replied to mae's topic in Dysautonomia Discussion
I have the thigh highs. I haven't tried them back on it kinda scared me because they were So tight. I don't have a B/P or heart monitor at my convenience so I don't know hows its affecting them. I guess I should call her and wait on the 2nd order . Thanks all Mae -
I went and had them fit and actually walked out of the fitting room with them on. And about 5 minutes into wearing them I noticed they were SUPER tight like having tourniquet's on my whole legs and I actually felt like my circulation was totally cut off and my heart beat was SO HARD throbbing in my upper body .I excused myself to the bathroom because the extreme panic sat in and I forced them down to my ankles and finished with the appointment. Is this normal or are they TOOOOO tight? I have to call and let the fitter know before she sends out my other order if this isn't right. I wanted to as
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Hi Pat , I also have fluctuating elevated to normal liver enzymes. Its not extremely elevated but it happens often I take no meds and I did have an ultrasound of liver and it was normal so who know (like everything else I never get an answer) Mae
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(((((HUGS)))))) It did help to hear what you all had to say it has been hard and I know it is hard for him too, and he has said he doesn't know what to do to help and he feels hopeless.And he does say he wants his wife back or at least find a Doctor to tell him exactly whats going on so we can JUST KNOW and manage it...I just hate when he says those words of disbelief when he knows its just because he doesn't want it to be OUR REALITY. I wish I could give him comfort and also receive it because I need it so bad .I thought of a therapist but I feel more comfortable here because you all know wh
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Thats the one I'm going to see 1st week of July I know its still some time away but I can't wait !!!!!! I have a few questions is it a good idea to write down all my symptoms or does this aggravate a doctor? Could I actually get a DX formally with just my 1st visit? or am I too hopeful. If you did she her was testing done right away or within a few days? Cause I can't leave my kids too long at grandmas house And did you get a discount for hotels from C.C? Prices are ridiculous!
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I haven't taken any birth control my whole life ( I have 5 kids ) but I will say I've heard not to take anything with estrogen if you have a rare disorder like Lupus, certain heart probs and such because it can aggravated the symptoms. I've heard progesterone only is the least likely to cause side-effects . With all that said I feel every fluctuation of every hormone in my body throughout the whole month not just during cycle I may have a week or less feeling half way normal. It really seems like my body is not handling not being pregnant even though its been over a year( kinda like a who