futurehope

Since my sister had it, I can tell you that the more serious condition is mitral valve regurgitation, not prolapse. The regurgitation eventually has to be addressed especially if the heart is enlarging in order to handle the malfunction. It took until my sister was in her 50's to need a repair to her valve to prevent serious problems. Also, I'm surprised Brittany had no idea of her problems, as usually, at some point, a doctor would have picked up on them, and followed up on them, especially if it is a well-known malady.

Excellent! God bless Brittany Murphy's brother talking out about this ailment as he has done. He has nailed it...the way it affects everything, the way medications do not help him, how long it takes to get diagnosed, and the need to push through the constant symptoms in order to live your life. I agree totally with him about his trust in God as opposed to trust in anything else. Watching him made my day. I am not alone. Someone else "gets it". Of course, you all "get it" too. As to dysautonomia causing death.... my opinion has always been, despite the doctors saying otherwise, that they have no idea if this disease can affect your life span or not. If they find an underlying cause, they may know more, but to say point blank that many people will get over this in a few years, when many of us have had symptoms from a young age?????? How can they know anything? They do not even understand this syndrome? In your particular case, it may not affect your lifespan. But, in general, I doubt they have a clue. BTW, I do not let this syndrome affect my outlook at life. As Brittany's brother said, God has me here (for a reason), He is with me, and I trust it will all work out for good. My faith in Him sustains me. This video made my day. The speaker was very good at expressing "the core" of this illness and how it affects things.

Since my skin is so dried out from Winter, I shower either every other day or twice/week. The hair gets washed in the shower twice/week. More than that and I'm dried out. I do "bathe" with a wash cloth every day that I am not showering.

Yes, I've been getting up earlier to adjust for the time change, and I'm doing poorly. I wish they would leave the time alone.

There's not much to add to the wonderful, kind supportive thoughts already posted, but, I wanted to add, do not underestimate the amount of energy you use "hiding". Living with this as a secret, hiding your problems at work, is sheer torture. I've been there. God bless you! And, may the Gatoraid be just the thing you've needed.

mitochondrial disease (actually, I have no idea??) Praying for you.......((((((HUGS)))))))

Jump, I don't associate words and sounds with color. As a matter of fact, I had never heard of this gift until the original posting.

Wow, that's interesting. Not me. I don't have that gift.

Funny you should be discussing this.....I'm just noticing that a "benign" antibiotic ointment seems like an irritant for me. Now that I think about it, my skin, in general, especially on my hands and face, are overly sensitive to "you name it.." Since I've had POTS, my entire body is overly sensitive. What a nuisance!

Ericka, It seems that waiting for answers is so difficult. I am sorry you are going through this, and I want you to know that your well-being, both emotional and physical, are on my mind. I pray the doctors have wisdom so that they can figure out what is going on and give you the help you need, as soon as possible. I eagerly await your news. I'm praying for you. You will be getting answers soon.

I have a twofold problem. One, supplements that are usually given by alternative docs usually send my GERD into overdrive....stomach/esophageal pain and heartburn through the roof. Two, a small bit of cortisol affected my blood sugar to the point of making me hungry. I was gaining weight. Forget it. It did not help the fatigue for me anyway. It just caused a bit of anxious-type tachy for a few days. It wasn't worth it for me. I said the above to relate my experiences. I truly hope you find improvement. Check back with us here and let us know how you are doing once you meet this new doctor.

My suggestion is similar to what's already been said. If you could get your hands on a blood pressure cuff, take the reading after lying down, then after 2 minutes of standing, you may have the information you need. You can take your own pulse in these two positions so you can see if it is elevated after standing still. Look at your hands and feet after standing still as well and note any color changes like reddish purple. My suggestion is to hone in on the BP/HR readings early into the actual doctor's exam (especially if the change from supine/standing is significant). This way the doctor will see scientifically what is happening in your body and know it is not all in your head. Than, find a doctor who understands this condition and may be in a better place to help you, if the new one has no idea.

Sugartwin, So, now that your search for a basis for your POTS is over, is your quality of life improved? Did the search results contribute towards the outcome?

I found the following on a NINDS(sp?) website when I googled: skin biopsy neuropathy Inflammatory and autoimmune conditions leading to neuropathy can be controlled in several ways. Immunosuppressive drugs such as prednisone, cyclosporine, or azathioprine may be beneficial. Plasmapheresis-a procedure in which blood is removed, cleansed of immune system cells and antibodies, and then returned to the body-can limit inflammation or suppress immune system activity. High doses of immunoglobulins, proteins that function as antibodies, also can suppress abnormal immune system activity.

I hope you are okay today, Erika. It sounds to me like you are due for a "rest" period. Maybe, for you, the stress and strain "add up" over days, weeks, until your body rebels and makes you rest? IOW, the meeting described in the OP could have been "the last straw", not that it alone caused this problem, but a kind of accumulation of overdoing it? As to what exactly is happening to you physiologically during this episode, like maybe low blood sugar, low electrolytes, a return of a dormant Guillain-barre, other auto-immune or viral flares, endocrine issues, other issues or a combination of the above, only a doctor and some testing would help you understand. Please let us know what you decide to do. Feel better!

Stace915, I agree with everything you said. I've often stated that I think us POTS people deserve a medal (how about gold?), for doing the normal everyday activities. Our normal day requires much willpower and much effort compared to healthy people. My normal is to push through everything. I watched my Dad literally stop moving for the last 30 years of his life because he said his heartrate got too fast and it scared him. I do not want to live my life like he did, so I push. Life may be more difficult for me than for others, but I do have this life and I intend to live it. God bless you all!

Yes, Erika, I get the symptom of not being able to walk, or put one foot in front of another, or of barely being able to do anything. I get this primarily when I've pushed past my maximum when exercising. I always tend to push. Sometimes I do okay with pushing, and sometimes I get the symptoms you've described. I'll try to describe an episode: I feel shaky and weird like my brain cannot get my body to move. I'm feeling like I'm reeling or stumbling like a drunk. I'm basically in a brain freeze and have to use sheer will power to make it to my car. That's why I try real hard to park as close as possible in case I have one of these attacks. For me, I recover if I sit, or if I recline. The severity does not return once the stress of too much exercise is gone. I freaked out the first time and thought I'd never make it to the car. I did make it. Sheer willpower. It's happened many times since, so I do not freak out as much now. One of these days, I'll probably keel over. I tend to keep pushing the envelope. I imagine you did too much, and your brain/body are rebelling. Maybe you'll feel better once you rest. Is this a new symptom for you? Also, there's a difference between "being weak" and my above symptoms. My above symptoms are as if the brain-body connection is short-circuited and my brain cannot get my body to move. I always guessed that it was the result of a lack of circulation to the brain, which is supposedly a sensitive organ?

Reality check: You do need help. You said so yourself. You are keeping your problems quiet so as not to jeopardize your job, and you are able to do this because of your sister. Your sister will be gone. ------------------------------------------------------------------------------------------------------------------------------------------ This is not about "pushing yourself through fear", as you say. This is about reality. You have ongoing medical issues that change from day to day. I call that reality, not "fear of not being able to do it". What are your options? You, yourself, know yourself best. I do not know your everyday health situation, or how easy/difficult it could be to lose your job. You choose what is best for you. I know I told you before, on this thread, to take vacation at the same time as your sister. I'm changing my advice, and now say......You know yourself best. Choose what is in your best interest.

Personally, having worked in an office hiding my POTS problems as you do, I would be under too much stress worrying about potential problems, as you are currently. The reality is, your sister is usually there to do what's necessary. I would take vacation at the same time and leave it at that. You are fortunate to be able to work and to have your sister as a backup. I would not jeopardize that with unnecessary risks, like you needing help, and the company then learning how your illness is really affecting your ability to function. Take off. That's my advice.

Sounds interesting! Hopefully, they will be able to use scientific data to authenticate what we feel on a day to day basis.

My opinion is this doctor is saying whatever is necessary to keep from being the doctor who fills in any disability forms, or from potentially being called to testify on your behalf. My neuro refused to write out anything for my disability claim, but I got the disability anyway, based on his doctors notes and the notes of other doctors. The notes I'm referring to were the "normal" patient notes that every doctor takes. He probably freaked when you mentioned paperwork. It stinks, I know. I'm so sorry that you have to go through this.

Valliali, It sounds like you are doing too much. Those are the symptoms I get if I overdo it. That being said, I'm a firm believer in pushing the envelope for myself. I will not ever give up or stop exercising unless I'm dead.

StacyRN, Avoid singing???? I can't sing when I'm short of breath, even when I want to. Sorry, the word "avoid" struck me as funny, in light of the fact that I love to sing in church and cannot. I do have occasions in which the talking and singing are fine, so whatever causes the problem is a mystery to me. Maybe it's a high heartrate, or I'm being orthostatically challenged, or I'm more tense or nervous than usual and it affects my breathlessness?? It's a mystery, and it's a pain.

I've had an EMG. I have positive Achr antibodies, so they were testing me for signs of Myasthenia Gravis. For now, my blood tests are abonormal and indicate Myasthenia gravis, but I'm currently not showing any signs.

I need your input here. If I listened to my doc and only did a bit of exercise and worked my way up, I would do nothing. I have very little energy and can only do very little. So, I push myself. (My doctor is Indian and thinks "pushing yourself" is an American concept.) Honestly, if I hadn't pushed myself in the last 30 years of my life, I'd have nothing that I have now, because I was always tired. How can I not "push myself", if getting out of bed is difficult (because of low pulse pressure), and everything else wears me out? So, I push myself. I either do that, or stop moving all together. Comments?