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thank you... glad to know i'm not alone.. when I say something about my freezing hands and feet and the blueness they just look at me funny.... Yes I did have 2 ttt and both showed the whole time in standing postion my hr over 140,,, but they say it cannot be POTS because my bp stays normal or goes up tried showing them the research and they ignore it and won't look at it..... any advice on that? HUGS LISA

I am still not dx have had several tests and everytime I see a doctor I tell them about my legs turning blue when I do my daily stats. which is the only time I can get out of bed. I try to stand at least 6mins to get all the readings and my legs ache so so badly and they turn blue and blotchy. Has anyone had this???? any ideas of why my legs turn blue and is this dangerous????? the doctors have no interest in looking at my legs to see what I'm talking about...... what is with that!!!! my readings are 60 laying to 120 plus bpm standing ttt showed 130 to 160 the whole 16mins. hugs to all Lisa

Maxine, I have Multiple sclerosis and now they are looking into POTs also, which is uncommon..... I have had ms since 2005 and several mri's of the brain and spine with and without contrast...... just letting you know you are not alone!!! BIG HUGS TO YOU.........LISA

thank you very much doctor and maxine.... I appreciate your replies..... hugs>>>>lisa

the other day was my second tilt table test in 2 months. I hung in there 16 mins. with my heart rate above 140 the whole 16 mins. I was calm except the extreme weakness all over my body if i wasn't strapped i would have hit the floor... She kept asking what i was feeling and I couldn't hardly answer her because i couldn't think and too tired to talk.. my legs hurt so bad and then she said let me know if you can't go on and i said lets keep going to get all the results and 2 minutes later my body went into a crisis............i got so sick to my stomach..it felt like the flu hit me all at once.... i screamed i have to lay down and as soon as the bed went down my heart went to 65bpm... here is what is so baffeling to the docs. my hr stays high the whole time without any meds....but my bp stays in the normal range....what does this mean???????????? any advice?? hugs to all>lisa

i have not been dx yet with pots but i have all the symptoms and daily stats to show the doc when he gets to see me.. going to vandy june 13th and yes i have the high heart rate and the rise in blood pressure.... good luck to you with the right meds...hugs lisa

I am a very open minded person..... I am a researher....give me something and i will do everything i can to study it... my family was involved for a few years in a church that believed like the secret believes.... we are God's children and we are not suppose to be sick of any kind and it is of the devil.... when God led us out of that box I realized that for a year my daughter was sick and all we did was speak over her that "we do not claim this illness it is of the devil and you are healed"...we spoke it into her over and over...... when our eyes were opened we came to the conclusion that she needed medical attention and we shceduled her for surgery and 3 years later she suffers no more ..... How ignorant were we....that should be against the law and to me now that is neglect..... i use to cry many nights thinking i could have hurt my precious child for the rest of her life and she suffered while we pretended she was not sick. I was a very healthy adult and didn't even have a family doctor because never went to the doctors.... never dwelled on anykind of illness.... i had some tingling in areas of my body i could n't tolerate excessive workouts but never minded or thought of it as anything to worry about.... after a wonderful vacation with my family i had to go to the er because of some crazy symptoms i was experiencing...they ran test ...mri shows 6 lesions on my brain, spinal tap show....multiple sclerosis.....what? what is that? I consider myself a very strong person and mentally sane and have found my God center...... today at 31 i am bedridden because of symptoms of POTS along with MS......drs. are so baffled but i'm fighting so hard to find someone who will say to me this is a easy fix and you can start playing with your 3 little girsl again.... I cannot see how I called this into my life. when i watched the secret i could not connect with it at all....we have enough to handle to pile on guilt that we may have caused this whole thing.... too many people in our lives are suffering... another aspect to consider is the chemical we eat everyday and the toxic environment we live in... they say eat healthier but healthy food is way too expensive for the average person.... who in your life have you come across that inspired you the most???? i have found it was the ones who face disabilities or those who are going through some things that you could never imagine how they are handling it....those children in the cancer ward who still have beautiful smiles on their faces and are so strong and it makes our problems seem so small..... >>>>>something to think about<<<<<<< God uses all of us,,,sick, well,, suffering... we would look like a bunch of robots looking the same acting the same and speaking the same....how boring would that be.... God made us all unique..... hugs to all LIsa

thank you for the support and your replies..... I have been bedridden since my last attack of OI (Feb 23 07) No drs. seem to care and I do wonder if it was there mom or wife or daughter if they would do more... I do have great spirits and thank God for this laptop and I have a great family.... I can 't believe just a year ago I was so normal and how does someone end up with two different conditions that are so unpredictable that you don't know how to plan for the next day..... This can be very hard to deal with and for some reason I want answers...... If it is the ms causing this ok then I will just deal with it because I have exhausted all medicines... i am super sensitive to everything I have tried... My husband jumps up out of bed to go to the kitchen and I thougt I'm doing the same thing... I pulled the covers off and got up and my mind was going but my body couldn't that hits me hard.... When I am able to make it out of the bedroom door I am going to kiss the floor.... . So many things I have taken for granted....Thank God for knowing I am not alone! Lisa

I was diagnosed in 2005 with multiple scleosis with mri and spinal tap...showed 6 lesions and now more and 3 on spine...I mentioned this earlier but I have been having the symptoms simaliar to POTS since before my diagnoses.. My question is could the doctor be wrong about the ms causing pots and does anyone have the same issue... I feel so alone in this. I requested all my records from everywher I have been and I am going to Vanderbilt If they will take me.. Anyone heard of POTS causing lesions on the brain and spine...sometimes I wonder if I really have ms except I had the tests that are suppose to help diagnose ms..... Anyone? Hugs Lisa

Hey I am confused about my blood pressur also.... from laying it is 106/60 to standing it goes to aprox. 134/90....i thougt with pots the blood pressure drops... my heart rate goes from 60-70 laying to aprox. 120 bpm... my cardio with the ttt says it can't be pots because the blood pressure will go down....very frustrated i hope we both can find out what is happening.....good luck ....LIsa

speaking of blood pressure....before this episode that seems to not want to go away I had normal blood pressure aroung 100/60. when i had the episode out of the blue and went to emergency room.... I have crazy blood pressure when i try to stand it rises to 134/95.....when the TTT that is the reason he wouldn't diagnose me with pots... Does this happen to anyone else with pots and is it possible to have pots and blood pressure rise not fall????? Lisa

Thank you so much for your advice..... the ms diagnoses was I went to the er strangly enough about the symptoms close to a stroke but severe pain down my left arm and in my shoulder...was experiencing tingling and numbness in my fingers for some time before this... I also had symptoms usually only signs of ms like the shocking sensation going down the spine...(llerhimitts sign)... So they did alot of testing... one was a mri of the brain a ct scan a spinal tap they put me through it ....the mri showed 6 lesions on my brain they were almost positive they were ms lesions and then 1 weel later the spinal tap results came in and showed most likely ms also.... I have learned that those are usually the test to be pretty positive if you have ms or not...... Been to 3 neurologist for opinions and they all confirm it... . recent mri shows more lesions and 3 now on my spine.... maybe this could help with the ms thing.... I do appreciate all opinions of what I should do.... thank you lisa

I am new to this forum .....But oh my gosh the stories are so funny sometimes...that my kids and husband are wondering what I am getting a kick out of all by myself I do understand the dr visits I have to say but ohhh you should have seen me last week Never works and it never fails you are always better on appointment day....

Hello my name is Lisa and I have been reading this forum for over a week and wow most of you sound like my story. I have multiple sclerosis and was diagnosed in aug 2005. My family and I have ajusted to the lifestyle and then comes this mysterious happening . Feb 22 2007 I noticed I became very very fatigued and said I have to go lay down. I notice my heart racing and I have a blood pressure cuff and I checked it. My heart was around 116bpm. I thought I was ok and I woke up the next morning around 4:30am to go to the bathroom. Was fine and walked (yes I said walked) in the kitchen and all of a sudden it was like my body went into overdrive complete trauma wow can't even explain. It was so bad I told my husband to get someone here to watch our kids and take me to the hospital I am dying...... Everyone in my family knows I don't go to the hospital expecially our local one. The last time I was there was when I was dx with ms. Well so they proved how dumb they are again... Kept me there for 3days and did nothing but monitored my stats. They did orthos about 5 times. They said I was ortho ( at that time I didn't know what it was) Then blamed dehydration and filled me with 5 liters of fluid and guess what it didn't do anything and they quit trying...I said let me go home... That morning with the episode that sent me to the hospital I haven't walked since.. I cannot stand my legs are very heavy and I have to drag them and my heart races... In the bed ever since My neurologist did another mri of brain and spine.... new lesion on the thoartic spine..but he swears it has nothing to do with OI... So after reading about pots and the tilt table i am on a rampage trying to get a cardiologist and a tilt table done. So I did and of course it had to be done at that horrilbe hospital where 2 weeks earlier that didn't know what to do with me. First of all the tilt was nothing like what I have read about...where the big hospitals do them.. The whole thing was maybe 20mins and most of it was a nurse standing in front of me telling me that all it is is hyperventilating.. She was saying you are doing this to yourself.... I do believe my heart rate was a little higher than usual because if I wasn't strapped I would have knocked her teeth out... So the doctor runs in a second and they tell him what they thought and then he's say for me to go see a phyciatrist Sends me home on Zanax.... Now that is on my record This is what I need to know>>>> He said because my heart rate was going extremely high and my blood pressure raised also and he said with conditions like POTS the blood pressure drops....So you must be having Anxiety Ok so my husband rolled me out to the van and I lost it, I cried all the way home. Then I got myself together and I said lets look into anxiety because I know that can be a horrible condition to have also so lets get it fixed...I was willing to except the news... Heres what I did got back in the bed and became my own doctor Nothing fit me except OI.... I have been taking thorough records everyday I also decided to sing "JESUS LOVES ME" and look at the pictures of my beautiful little girls while I took my stats laying down, sitting up , standing....I will give examples and they have been very consistant.. 3/5/07 106/65 71 133/88 87 137/95 114 as soon as I layed down it went to 105/61 61 3/7/07 105/64 78 128/88 97 134/91 116 3/11/07 110/69 76 117/80 96 with 2 min. standing 122/86 114 with 5 min. standing I could not stand any longer than that....my legs were extremely tired and hurting 106/64 70 as soon as I layed back down what baffles me is the blood pressure rising instead of falling..... I am very symptomatic and can feel in my head while sitting on the computer at times that my heart rate is rising... I live in the Kentucky area and I have the choice of Cleveland Clinic or Vanerbilt..any advice! so sorry I had a lot to say,,,,, I need to know I'm not crazy....All advice appreciated PLEASE sincerely Lisa