morgan617

Dizzy, please make sure this neuro understands periodic paralysis..take some literature with you, just in case! I have mind boggling fatigue, there isn't even a word for what I feel most days. I have tried lowering my beta blocker, but then I feel horrible from surges and tachycardia, which are just as fatiguing..not sure that's a word. I do not know what to tell you, I do know how you feel, just not what to do about it. I can wake up after 12 hours of sleep and pack all my clothes in the bags under my eyes and then take a nap....morgan

High hopes for this journey Ernie! I know you have gone through so much, and many trying times. I will pray she will be able to help you! morgan

I see you take licorice? It can lower your potassium. I find it interesting that they felt your BP was high. I've gone in with bp's of 200/120 and they didn't even put me on a monitor. Not sure what to tell you, maybe pots is rearing it's ugly head, I hope not. I don't know anything about D-Dimers, but it sounds like one of those non specific things that really don't help much, unless you have something else specific to go with it. Then, if you don't, it gets completely ignored. Hope you feel better soon. Did you get some K+ supplements and are they doing anything to see why it's low (except suggesting you stop the licorice and then retest?) That BP thing is really throwing me.....morgan

My ablation made me worse instantly. I never worked again. My old EPS says, I was ablated for IST vs Atrial tach. They found an abnormal blob of tissue and that's what they ablated. It, however, was over the top of my right atria, going to the back side, and they couldn't get to it all, and so just ablated to death what they could get to. He said it was not an extra node. My new EPS says he will just not ablate POTSIES, because our electrical systems will just find another way to get tachy again. I didn't have tachycardia for about 2 weeks and have had it again ever since, but I felt far worse that two weeks than I ever did any other time. Now I have a pace maker, because of probable damage to my sinus node. Tachy-brady syndrome. I know ablation really is a big help for certain things, even a cure, but if you have autonomic dysfunction PLEASE see an EPS who understands pots before you agree to ablation. I have never been the same and not in a good way. I am not against ablation at all, and have seen it make amazing differences in people's lives. But I have seen very few potsies here that it has helped. I'm just sayin.....morgan

Look at those cheeks! What a cutie...congrats again gramma! morgan

We lost our cat Amanda 2 days ago. She was 1 when we rescued her 3 years ago. She was diagnosed with inflammatory bowel disease right after, but had been well maintained on steroids, with only a couple of major, scary flares. She went off her feed on Sunday and so we took her in on Tuesday. Her creatinine was 12! Normal is less than 1 in cats. 5 is considered as severe as it gets. They had never seen one that high, and ran it twice just to be sure. So we have lost three kids in a year. We got Oreo and Abbie (pom poos) after Chloe and both seem healthy. Oreo was almost strangled on her collar while playing with Abbie (PLEASE use harness type collars on your pets, if this had not happened right next to me, she would be gone too, and it could have easily happened in the yard. I can't even begin to tell you how traumatic that was, trying to get them separated) They said she probably had less than a minute left and almost lost her eyesight. So the only healthy pets we have ever had, almost got killed by a collar! Anyway, I will do anything for my babies, short of letting them suffer because I can't let go. Her life would have been constant trips to the vet, fluid bolus, special diets, tons of meds, pain, and she still would have had the same ending. He felt her prognosis was so poor, he didn't really want to put her through any of it. And neither did I. I just want to say, for you cat lovers, by the time these kids have symptoms, they have typically lost over 70% of kidney function and it is usually irreversible. It is the second leading cause of death in cats and very hard to treat, even in the early stages. If your cat is seven, please screen them once a year. If they are compromised in any way, more often. I have no idea how long this baby was sick, because they hide it from you. Cats in renal failure pee MORE, not less and are very thirsty. Amanda did not show these signs, but they are the most common. Poor coat, and vomiting are also hallmarks. Anyway, this year is getting off to another great start. And since you are "family" I just wanted to share my misery. I don't think that's what families do, but my real family isn't very interested in the grieving process of losing pets....sadmorgan

Well Missy, we are in a similar boat, but I am old and you still very young. Although any normal healthy 53 year old would say WHUTT???? OLD?????????? But I digress. This isn't the way it's supposed to happen, children leaving before their parents. Ask any parent, or any ill child, for that matter. But no one ever said life is fair, or that we are supposed to understand everything. I think most of the time, I don't understand anything any more. I think acceptance is easier on the person dealing directly with the health issues, than on the ones having to stand by and watch helplessly. And feel helpless. So hard to make us hang on and so impossible to let us go. No matter how much longer your journey is, you are on a swell of love that also surpasses all understanding. As a mom, my heart breaks for your parents, as an ill person who was told the last time she saw her doctor, it's just a matter of time and not much, I feel a bit like you I think. Maybe not, but I imagine so. You know how I feel, about so many things, and you are such a special little fish, no matter where you are, and a special light to guide us all. No matter what the future holds, know many prayers and thoughts are winging their way to God's ears. His answers aren't always what we want to hear, but they are never wrong....love you missy girl...morgan

All the time. Even though I am on meds, I think my body fights them and the meds may hold down my pressure and pulse, but my autonomic system doesn't seem to pick up on that....morgan

My son and I both have gastroparesis, although our gastro refuses to call it that. We've both had the radioactive eggs on several occasions. He says we have "motility problems" well DER. So we just do the best we can, avoid killer foods and complex stuff, etc. He has given Jake domperidone, but it doesn't seem to help enough for Jake to remember to take it, so it's just a diet thing. He won't give it to me. Good luck with this...if you can, you may want to talk to a nutritionist who can help you come up with a diet that works with this. morgan

sorry, no idea why this came through twice, heavy gravity fingers hitting the wrong keys I guess...morgan

I feel that way about 90% of the time anymore...I have no idea what causes it, but it takes out any peripheral senses I have and I am constantly injuring myself. My two little dogs (I mean little about 7 pounds) have a tendency to jump on the back of my legs and hit in my knee area and I am going down almost every time now. It's getting pretty scary, but it's useless tell my doctor, so no explanation. I am guessing yours is sensory overload and fatigue?? morgan

Congrats Maxine, or should I say gramma? I am very glad everything went well! morgan

My ENT is wonderful, always has been.....

I knew I could count on you sophia! Thanks! The ringtones are more in the nature of "she'll be going to the psych ward , it's our waaaay. We all know it's make believe, so it's okay....our fragile little egos won't allow for I just don't knows, so she's goin to the psych ward any day."

Angelika, 1. means you have a lot of fast heart rates...your average heart rate is above 100. A normal person will have up to about an hour of tachycardia in a 24 hour period. More than that is considered abnormal. Sinus arrythmia means your heart is in a sinus rythym, it's just a bit irregular. Most people have sinus arrythmia when they breathe. If you have a pet, put your hand over it's heart and feel it as it breathes in and out, it will likely speed up with inspiration and slow down with expiration. The beats are not abnormal, just not regular..fast then slow then fast then slow. This is very normal. The frequent bouts tachycardia are not normal. The pr and Qrs are just measurements of how long it takes for each part of the beat itself, these numbers are normal. 2. It sounds like you had one PAC, that's a beat that happens before it should, that starts in the beginning of the beat. Premature Atrial contraction...these are also pretty normal, in that every has them once in awhile. It's probably the thump you feel at times. The heart starts to fill with blood and send it to the left ventricle, which shoots it out to the rest of the body. But the sinus node, which initiates the beat, fires before the heart is ready and shoots out too little blood. Then there is a slight pause while the heart resets and that causes the ventricle to get a bit too much blood, so the force it takes to push it out is more. So you don't actually feel the abnormal beat, you feel the beat after that. These are extremely common. In many many people. Beats that occur above the ventricles (the two lower larger chambers of the heart are called supraventricular beats. These are not life threatening, as a rule, but can make you feel pretty crummy. When your rate is really high, starts suddenly and stops suddenly, it is called supraventricular tachycardia. There are many types of this. Atrial fibrillation, atrial flutter, atrial tachycardia, etc. You had a PAC, which is different than sinus arrythmia. They look different on the monitor, so that's how they can tell the difference. 3. You had no ventricular arrythmias. That is very good. These are much less benign (although you wouldn't think so, the way people here are being treated, that have them) Everyone has these too. An occasional pvc or a fair amount even, if not all in a row, is okay. It's when they run a whole bunch in a row and you have VTach, that you get into trouble. These beats take over the sinus nodes job, the beat is sort of backwards, so no blood can get perfused to the rest of the body. It should go:sinus node to a-v node to bundle of His, which squeezes the ventricles and forces the blood out. pvc's start at the bottom. The fact they didn't catch any doesn't mean you don't have them, but it is reassuring to know that if you do, they apparently aren't frequent. Although some days are worse than others. 4. You have no heart blocks, which is also good. There are many different kinds and most are pretty benign. Some are an indication of heart failure and some of major electrical problems. Some people just have aberrant ones, which they have always had. Bottom line, you didn't have anything life threatening, but you do have an abnormally fast rate. it could be inapropriate sinus tachycardia (IST) atrial tachycardia, or an atrial flutter that they might miss. Atrial flutter at 150 or so can be very difficult to see or pick up. It can look like atrial tach or sinus tach. Whatever it is, you go way beyond an hour a day, which is abnormal. Now they need to decide what to do about it. I had ablation too and it was not a good thing for me, so it's something to discuss very carefully with a specialist. it can be a miracle for some and a bad mistake for others. I don't know if you have tried beta blockers or any other meds to control your tachycardia, but that is the first line of treatment. Apparently your GP is not very open minded and you should get a cardiologist to discuss all this with you. I hope that helps a little. morgan Please excuse the spelling and mistakes, I am a brain fog tonight.....

I used to panic over losing my docs, but not anymore. Glad it worked out for you! morgan

Well, howdy doody!!! Thanks for nominating this and winning!!!! You do us a great service and please know how much it is appreciated....btw, can you get the doctors where I live out of the stone age?????? I think they still believe MS is in your head, and I don't mean physically. where is that covered wagon sophia??????????? Thanks doctorguest! gratefulmorgan

Good job, sophia! I'm glad some the responders were doctors! morgan

What a cutie! I need to get pics of my pompoos, Abbie and Oreo. Oreo is so dark, she just looks like a black blob in pictures with glowing eyes. they are actually a bit scarey...LOL. Congrats on the baby! morgan

Man I guess you are lucky! Be very grateful you don't live here! I have never smoked , drunk, or done drugs, been addicted to anything, had an std, nada, nothing. I worked 36 years of my life, non stop, went to college, have been in a long term stable marriage, raised two great kids, And I get treated like crap by almost every doctor I see. I guess it can be hard to understand, if you haven't experienced it. I'm not sure I would know how to feel or what I would do if I was treated well. I'm very glad you have had such good care Pat. It's nice to know there are people out there getting the care they deserve. Sorry if I sound defensive, but sometimes it's easy to say, do this or go there or try this, and you have, a million times. I am pretty defensive, just because I am invalidated at every turn. Someone on another forum told me I just don't try hard enough. Good grief, I don't know how much harder I could try, so then you are dealing with invalidation by someone who's supposed to understand what you are going through. It becomes self defeating when you have to defend yourself to people with the same struggles, who just happen to feel better than you. I am not getting my esophagus dilated again after the next one on the 4th of February. You'd think the fact that I have gained 10 pounds since it has been done regularly would attest to the fact that there's a problem, and the procedure helps.. The fact is that he sometimes can barely get the dilator in and still refuses to say I have a stricture. Somehow, under sedation, with a spray that completely numbs my entire throat, I still seem to be able to conversion a tight spot he has to wrestle with. "brilliance" will win out over "arrogance" every single time when it comes to me and that is not a fun thing to live with......and it makes me even sadder to know I am not alone in this. I think you are actually a minority here....... morgan

Welcome back Amy, it's so good to hear from you! morgan

Maxine, do you still have the loop recorder in? I don't think you can have an MRI with that can you? You should verify that before making such a long trip. Maybe you had it taken out and I missed that, if that's the case, oops, sorry.... I'm assuming you won't get any results or anything, as it's a research thing? Or will they let you know the results? It would be nice to have answers to some things wouldn't it? Good luck sweetie! morgan

How pathetic..... I've been diagnosed with fibro for over 30 years, but I never ever tell any doctor I have it. I have learned the hard way, I will be dismissed as a valid patient before the word is even out of my mouth, where I live. I worked in a practice where they refused to see any patient who even hinted at fibro symptoms. The particular doctor I worked for got an earful from me, but it didn't make any difference. They do have proof of disrupted sleep patterns, multiple micro muscle tears, and chronic tendonitis. I can't even recall how many steroid injections I got in joints that were incredibly inflamed. I wouldn't take lyrica, simply because I have just learned to live with pain. The strongest med I use is advil, even when I am waking up all night from pain. This is another complex illness being invalidated because it strikes mostly women. I actually met a male doctor with it and he said he had received no ill treatment by his peers and he wasn't sure where this "stigma" thing by women came from...well, der.... I find this article very disheartening, although I am not at all surprised by it.....just put it up there with the rest of the instant psychiatric population of doctors and those drug companies that are corrupt, which make it even worse for us. Just another day in chronic illness paradise......morgan

I don't have that channel either, this is when friends come in handy I guess.....thanks sophia!

Well, bummer girl!!! All that anticipation for that.... I am sorry and more and more glad I haven't spent money going anywhere just to here in 5 minutes, what i can hear from anyone where I live..... If you go back, I hope it goes better. morgan