ariella

dizzy, Thought I'd chime in just to second what Steph wrote about mestinon and fatigue/weakness. I take mestinon for suspected myasthenia gravis, not for POTS. I have been told that mestinon can first cause muscle weakness in those who take it who don't have myasthenia. Or in those who overdose. Even for myasthenics, correct dosing is often a personal thing with a lot of trial and error, and myasthenics will adjust their dose even daily, based on severity of symptoms. As far as stomach issues, that's considered standard with nearly anyone on mestinon. I was advised to ALWAYS take with food. So

Hi, I imagine you're post surgery now, sending best healing wishes your way. I know you still have a lot ahead of you. By your post it sounds like you're going in with faith and positive attitude, your recovery should be swift. Ariella

Mary, wow You must feel so overwhelmed. Wishing you and you family the best possible outcome. How is Marissa doing? Ariella

Wishing you a smooth move, and lots of health and happiness in your new home. Ariella

Persephone, If your heartrate goes down to 30, YOU MUST GET MEDICAL ATTENTION. I know the doctors brushed you off. I learned something yesterday from my GP. I've been having trouble getting adequate care for some muscular breathing issues. He told me that the unwritten rule is that if a patient continuously shows up in the ER with the same complaint, THEY MUST TREAT YOU. 30 is dangerously low, as Melissa just pointed out, she was hospitalized extensively for it. It's hard not to be intimidated. Because you are young, they don't take it as seriously, you don't fit a cardiological stereotype. S

Dizzygirl, Not feeling well enough right now to write all that's on my mind, (was sent to the ER again today for breathing issues, and I'm knocked out.) But I didn't want this to go unanswered. It is such a horrible feeling for the people who are supposed to be our anchor not validate or support us, or worse, put us down. It probably feels worse to you right now than the disease itself. It's a kind of betrayal. It is so hard. It is important for your boyfriend to know how his attitude is affecting you, this can't be good for your relationship. You guys need to talk, at a time you feel well eno

Here to add a me too. My pulse goes low even more often than I get tachycardia, fluctuates wildly along with my blood pressure. When I feel my worst, my pulse is usually in the upper 40's. and my blood pressure goes up and down 30 points in each direction for a while. Happens most when I'm tired. Very uncomfortable. I lay in bed and drink until it passes.

Hi Rachel Avais gave great advice, just wanted to add that maybe your doctor can write a letter of request for you to get a bulkhead. Make sure though that it's understood frome the letter that you may fly. Everyone is scared of being sued these days. Good trip! Ariella

Dizzygirl, Your story is unbelievable. Something similar happened to someone I know who was in real respiratory distress, but in her case, she was the one who demanded to see a psychiatrist because they told her it was just stress. They hadn't picked up the resp distress b/c it was caused by neuromuscular disease, which presents differently and shows different signs (for examlple, pulse oxygen will usually be normal if patient is conscious). This psychiatrist also saved her life and had her sent to the ICU. But your story takes the prize. I know, I know, you would rather not have the prize. It

Persephone, sorry you're dealing with this. Usually the worst I get from my doctors is that they don't know, therefore won't treat. However, did have (not related to POTS, neuromuscular issue) breathing distress Friday night, two hours of air hunger set off POTS symptoms, when the ambulance people saw my tachy and shaking, they at first didn't want to take me to the hospital, said it just looks like anxiety. When I told them that I'm being evaluated for a life-threatening neuromuscular condition, they finally agreed. Pulse oxygen went down to 90 in ambulance (so much for anxiety). Home now, no

Hi Ernie, Just want to wish you well. I'm hoping that it will be helpful to be see by someone who understands this disease. Will the Canadian medical system follow up on what he orders for you? BTW, if he gives you some Mestinon candy and you prefer to pass, please mail some this way, I've been begging them over here, and no one but me seems to have heard that it's being used for dysautonomia, curious to see if it would help my muscle weakness...Doctors very wary that my info comes from my "internet friends". Wishing you an enjoyable trip! Ariella

Hi Linda, sorry you're in pain. I've had a high blood bilirubin count with soreness on the right side for some time. I recall only 2 blood tests in the last few years...and there have been many..that were in normal range. Once urobiliogen was positive in the urine within this time period. With all else going on, nobody felt it was significant enough to follow up. But then my levels were not as high as they would have been in acute disease (I was told that serum bilirubin has to be grossly out of range- like over 8 times the upper value---before it's considered significant) I imagine your seru

Danelle, You have me laughing about the veins. The insides of my elbows look like I've been injecting myself with something intravenously. They also have a hard time getting the vein, and always use a childrens size needle! Let us know how it goes.

hi Danelle, Want to second Nina's view on ANA. Although it can indicate some serious autoimmune diseases, it is not used as a definitive diagnostic test on its own. Some people who feel healthy have an elevated ANA from time to time. The Rheumy, if he is responsible, will send you for a slew of rheumy-antibody-blood tests. Unless those show something up, you may very well be told to go home and not be concerned. I've had a positive ANA with different patterns on and off for years. Interestingly, it has been negative the last 3 years, when I've been at my worst. I know, it doesn't make sense.

one of the good things that has come out of needing to accomodate my POTS symptoms is that I realized that our household was too hectic. And we're working on making it more tranquil. I realized that we have more clutter than is controllable in our limited storage space, and the stimulation of seeing things not in order doesn't do good things to the ANS. Easy to happen in a large family. Still trying to get others to help more, I try to explain to them that it has nothing to do with Mommy being sick, rather has everything to do with having good manners. Sometimes if I calmly remind them that th