ariella

Jan, Sorry for entering so late, internet connection was down... Thoughts and prayers with you, Positive attitude has been proven to prolong life in even the worst cases of cancer..You sound like you're giving Jeff the most important gift you can give him now by not allowing the doctor's pessimism to contribute to his disease. Ariella

So for a differnet kind of suggestion... Computer graphics? You can print out and or email out your creations. Lots of free clipart online. Just need a program to arrange and edit the images, big price range there depending on what you really need. Ariella

hi the bp at all 4 points are consistantly inconsistant and assymetrical, often also by about 30. Dr's don't know what's causing it. What's p.v.d.? Ariella

And yet another question, we're still working on the other half of my diagnosis. Someone on this forum mentioned she had some kind of mitochondrial disorder, which mimics myasthenia. Don't remember who it was. Any idea what kind of dr. to go to to rule it out, as the myasthenia dx still in air? Would this be consistant with my dysautonomia symptoms? Ariella

Hi My sister needs to investigate the possibility of POTS. She has been having several abnormal ekg's which are puzzling the doc because the heart itself is healthy. (mostly T-waves) She has also had gastro issues for years, also of unknown origin. She is in NYC and covered with GHI. thanks Ariella

hi i've tested alternately positive and negative. When tried at home it's always positive. Cannot stand straight with eyes closed. Nobody has attached any significance yet Ariella

hi poohbear OY! Speedy recovery! Ariella

hi carmen are they absolutely sure of your diagnosis? shy-drager usually affects older people. when I was concerned that that may be what I have (I'm 34 and have dysautonomia together with walking and coordination symptoms), I read that one of the criteria for ruling it out is onset of symptoms before age 30. Most of us here on the forum have been misdiagnosed at some point. Praying that should be the case in your situation as well. Sending warmest wishes, Ariella

forgot to address one more thing... in terms of acceptance-vs-finding cure, i kind of look at it like a balancing act. On one hand accept the situation as-is, on the other hand acknowlege that things can change for the better when the time is right, and go through the motions of whatever medical stuff I need to do. But like I wrote in the previous post, if a test is not immediately urgent, I take "mental health breaks" of a few weeks from the testing until I can handle being poked and prodded again. Ariella

hi evening here now, and a little brainfogged, Congratulations on rose competition. As much as it's satisfying seeing something you've nurtured win a trophy, I think the bigger trophy is that your kids got it together to help you accomplish something meaningful to you. The children you nurture are winners! Also standing before a series of tests, probably another emg and a muscle biopsy. I take "vacations" from doing the medical rounds and tests every so often, it preserves my sanity. I totally understand your trepidation. My husband is picking me up a wheelchair on Tuesday. Thinking about how to decorate it. I borrowed one a couple of years ago. Was very self-conscious at first, got used to it. Also think my mom (and grandmother) and sister suffer/ed from POTS. Sister has same issues as your sister, but I think that seeing what I'm going through makes it too scary to think this may also be her problem. Sending love, Ariella

HI Something that's been puzzling my doctors, my pulse and blood pressure is way different from one side of the body to the other. Anyone else have this? What could be causing it? They did an ultrasound of the cartoid arteries, within normal range. I imagine this is why it feels like the right side of my body isn't getting blood circulating...pretty painful at times. thanks ariella

hi Julie, the others were all eloquent, just writing in to give you an "e-hug" the docs in THE major medical center in my city were about to pronounce me crazy, my POTS doc came to the rescue at the last moment with a letter explaining what I have. These are considered some of the top neuro's in my area, and I could tell the head of the dep't at the meeting was having a real hard time biting dirt that someone else knew something he didn't. To the point that when one of the other doctors at that meeting did a standard neuro exam at the meeting and a SIGN, not a symptom , showed strange, he pronounced it psychological (in a whisper, as if I'm deaf too) I find that sometimes just venting lts me pick myself off my tush and get fresh perspective. I hope you're in a much better headspace by now. Lots of love, Ariella

morgan, forget the treadmill idea, I can't walk too much either, muscle weakness with repetitve motion, I walk real slow and it gets worse as I go. That's why we're doing a workup for something other than POTS. But I'm laughing at the idea, imagining something under my feet making me walk fast! (I really am laughing, it's how I cope) Thanks for thinking of me! Ariella

Morgan, Had this for 11 years when POTS symptoms started. Was misdiagnosed at the time. Just got POTS dx a few months ago!!! Shortness of breath is getting much worse, feels like my body just is too fatigued to breathe. At best have to strain for a full breath, at worst even straining doesn't help. It's fairly constant now, with occasional better moments and many worse moments. Usually worse at night, but otherwise unpredictable. No cough. It's not asthma. Find it hard to talk. (God's way of telling me that I talk too much!LOL) Ariella.

hi I'm having a lot of trouble breathing, and we're trying to figure out if it's being caused by POTS or another illness that I'm being evaluated for. How short of breath is normal in POTS? I'm having trouble breathing even when not feeling otherwise POTSY. It's sometimes severe enough that I cannot eat, or I feel "drunk" from lack of oxygen. thanks Ariella

hi in my humble opinion, i think you should definitely check it out, Do you have other muscle weakness symptoms? Never heard of a swallowing study. I also have trouble swallowing, (but have other muscle weakness as well) they're doing a workup now for myasthenia (i also have weak breathing and muscles weaken with repetivive movement) I'm not saying you have this, but there is some research connecting autonomic dysfunction to myasthenia, and it may be a good idea to rule it out. Ariella

ditto about the potassium advice. My doctor gave me potassium supplements along with it. There was a lot of coversation going on here a couple of weeks ago, I'm one of the people who could absolutely positively not tolerate florinef, but it's likely that it had such a bad affect on me because I'm also suffering from a neuromuscular illness. good luck!

ok, I'm having a really hard day here. The POTS is out of control (last night every time I turned my head I started to black out), and I have another apparently neuromuscular codition happening that's also out of whack this week. Trying to keep my spirits up, so i thought I'd start a new thread about how our POTS may have affected our lives in a positive way. A lot of brainfog now, so I'll start with just something short. -I've learned to try to appreciate small accomplishments. -I work as an artist /musician, my work is definetly deeper than it would have been otherwise -I'm learning that there are people who really care, even those that I did not necessarily feel a connection with before Hoping this discussion will cheer us up a bit Ariella

Hi Sorry about your experience with the cardio. We could fill volumes. But it's not only with POTS being a lesser-known disease, even in more known diseases like MS patients could write reams about horrible bedside manner (and I'm sure can also write a lot about some compassionate doctors as well). Interesting you mentioned the oxygen. About a year before my diagnosis (it took a long time for them to figure this one out) I went to the ER because of what I now recognize as stuff that accompanies the POTS. Among other things, my feet were burning. I went by ambulance, they gave me O2 on the way, and by the time I arrived i felt better. Of course since I was able to touch my finger to my nose, the ER doc said there's nothing wrong with me. But in retrospect I think the oxygen definitely helped. ariella

Ernie With you in your loss The decision obviously is one only you can make, but if you do decide that the trip isn't possible, may i suggest you somehow find a way to "be with" your family even if you can't physically be there, at precisely the same time the funeral is taking place. Can you compose something to be read at the funeral? Thoughts are going out to you Ariella

hi friday I really can't be too informative here, other than to add that I also have very annoying leg pain, which for some reason is worse on one side (the arm on that side is also sore) . The doctor didn't think it was circulation, but I have a feeling it is, as it usually eases up a little if I take a walk, and it's also accompanied by coldness which is worst in the toes. One doc suggested peripheral neuropathy, which wasn't borne out by a standard emg. They did not do vascular studies. I sometimes feel like that instead of my blood pooling in legs, it kind of sits in one place (guess that's what very low blood pressure does) and my pulse rate/bp does vary from one side of the body to the other. Is your squeezing sensation on both sides equally? Ariella

one more thing, maybe someone in the health profession can tell me if I'm wrong, but I read that since the ANS is so complex, it wasn't even studied in-depth in med schools until fairly recently. I seem to have better luck with younger doctors.

as one compassionate doc told me after a similar experience-"no,you do not need a shrink, but by the time you finish with these guys you will!" sending love, Ariella

Corina, You know that you won by not feeding into his "psychological" thing, and remaining calm. Unfortunately it's scenarios like this that make many people avoid even emergency medical care. Happened to me today, was having trouble with my mouth muscles and breathing, (a little better now) but since my workup for myasthenia is not complete, I froze at the thought of going to the ER. I know, I know, irresponsible behavior on my part, but I couldn't face the possibility of meeting up with the neuro who thought I was faking my balance problems before my POTS was diagnosed. Hoping your primary will converse productively with this new doctor. Ariella

UPDATE: So the doctor gave me what's called here Pramin, according to my google search it's called Reglan in the US, it's Metoclopramide HCl 10mg. Any idea if it's ok? Ariella