mae

LOL Sorry I'm not a Poll expert yet Firewatcher!!!!!! I'll be there soon

I like doing these Polls . I answered #7

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

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 put it out of my mind and keep fighting because negative thinkings and feelings will not help you in any way...Keep your head up Mae

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 one of my problems, it just doesn't make sense to me. Thanks Mae you know I sit in the house all the time thinking and analyzing everything its like a 1,500 hundred dollar test is it necessary?

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

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

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 ?

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 times 4. Is anxiety or a hyperadrenergic presentation one of your problems with POTS? Unsure 5. are your symptoms worse in the mornings? Some days 6. Do your symptoms wax and wane or are they constant? Constant 7. Was the onset of your POTS abrupt, sudden or mild then sudden? Mild for years then abrupt after delivery Mae

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 ask you all because she had no clue about why we really need this of how tight it should be. Mae

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

(((((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 what I'm going through, and healthy people really don't understand what we really feel. Even if we all were magically cured we are all affected forever we will never view life the same and we will never take the small things for granted and we have a deeper compassion for life. We all share a bond and this website helps more than we'll ever really know alot of us have moments of just giving up and everyone around us seems to not be able to understand and we feel so low and our last thought is to Turn on the PC and login to DINET because someones always here and truly understands and will help pull or push you through that hard time. It helps me so much and I greatly appreciate all of you. Mae

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!

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 whole body shock) I actually went to the Endo doc to check all hormonal levels and they were normal. But I know I'm not just another piece of the puzzle . Maybe we have all the hormones we need they just aren't working right . I even thought of having a hysterectomy but thought it wouldn't really help because then I'd be dependent on artificial replacement which has its own slue of issues. Mae

I feel so bad for you and hope you get some answers soon, I will keep you in my prayers and I really wish you didn't have to have this daily pain. I know it must be extremely difficult and you have some support here I will pray for God to lay his healing hands upon you and lead you in the right direction. Mae

Thanks Brye, You have some positive input and I really appreciate it . This website is a wonderful place and it helps me get threw in so many ways Mae

I have been ill for awhile now and you know the battle we all share to even be truly believed .... Last night, which is not the first time I seen a lump in my breast and I showed and told my husband , it has happened 2 other times in the past 3 years and it will just appear and disappear. But it really worries me and I said I should really get this checked while its visible because when I went to the doctor last time it disappeared. And being 30 they just didn't look into it any further. He said your beginning to look like a hypochondriac it hurt really Bad. During this struggle to find answers from doctors since I've been sick he always had negative things to say and gave me a hard time taking me to doc appointment and always making me feel guilty or really like a burden. This is hard he is all I have but I know its not right to be treated this way. And walking away is not easy with this illness and having 2 kids 2 and 1 and no support. Mae

It was slightly off if I remember correctly the normal range was up to 32 or 33 mine was 34 and they did repeat it 2 more times 12 weeks apart and it was normal . It was just a curiosity since I now have the circulation problems . Thanks Mae

Thanks Girls, This has been difficult trying to get this sorted out in my MIND with the concentration problems and brain fog. I haven't been checked fro ANY viruses throughout all this! Which really upsets me!!!! I was checked for Herpes and All Hepatitis's which was a swab herpes test don't know how accurate that is ? It is kinda weird that a few of us have had the Heart weakness after delivery without a real explanation I will definitely bring this up with my new doc. I was DX with the Postpartum cardiomyopathy and was told another pregnancy would kill me, and I didn't want any more children anyway but I did want a better explanation that we don't know what caused it and now its better. And now I'm left with this which is still unexplainable . There has to be some link and with a cause would give me a better chance at treatment or recovery. No doctor has taken the time or done the research to even give me proper answers. As for the meds for B.V I can not tolerate even the gel I have numbness and twitching that lasted a week just from using it twice along with other bizarre side-effects my heart raced even laying down it was bad! I use to be able to tolerate the Z-Pac but now that even makes me flush and had a hot rash on my face after a few uses. I have to avoid any infections thats for sure Well you all have gave me some good information , I'll see what else I can find out soon Mae

Thanks Brye, hopefully it is virus induced if recovery is higher. I do go tho C.C in July maybe It'll all get figured out then. Have you improved since ? and when did you deliver? Thanks again Mae

As I posted before my symptoms were mild for many years . But after I had my last baby last year the first Cardio said my heart was Weak EF was 45% and had a stress test and couldn't get heart rate over 138 I had to stop. But he said with that stress test and echo I had recovered but the symptoms persisted as you see thats why I'm here! Does this make any sense to anyone My heart rate now goes to 120-140 just from standing now could that cardiomyopathy been caused just from delivery, a virus, and this is just a result from that ? Could I still have a Virus and what kind of virus cause this . I have not been tested for any Viruses . Theres so many unanswered questions from the doctors I've seen I thought maybe you all may have some opinions .... Thanks Mae One other thing that is kinda personal since I had the baby I have been dealing with Bactria Vaginosis and can't take any antibiotics because I'm too sensitive to Meds any suggestions

Another random question : In the beginning of medical journey I had a abnormal aPPT blood test is this familiar to anyone? And would that be expected from blood pooling issues ? Mae

Thank You all for participating, I have some similarities with some of your posts Skin looks grayish no more shine Lost weight Thinner hair Dazed look in eyes Lost breast volume???? I know looks aren't everything but the changes sometimes upset me and I wish I could just be healthy looking at least. I didn't really notice it , until I seen some people leaving a DMV while I was entering and I overheard them say **** she looks like the walking Dead it crushed me and I haven't forgot it , I never heard anything negative about my appearance in my life and thats when I became angry and self conscience. I do ride around in the motorized scooters in the places that have them alot now and at first I was alittle uncomfortable , it doesn't matter me me anymore because its needed . I guess I'm dealing with alittle bit of low-self esteem something else to work through. Mae

Hi, I don't understand the EDS, but I do understand your feeling of not knowing what to do about these DOCTORS , I suggest you do some extensive research on finding the best Doctor for this problem and contacting them, before you agree to anyone cutting into your spine and you must feel comfortable with the information they provide you, besides them just saying "we need to do this surgery" and if they don't give you the answers you need or make you feel confident in what they wanna do don't do it!!!! Just because some one refers you somewhere doesn't mean they are the BEST its all A Connect thing with Doctors they are all BUDDIES sharing the cash . And basically WE are experiment projects or research studies Unless they have Done exactly what you need. Mae***** stay strong