Lukkychrm42

Hey there, just so you know, antibiotics only help when it's a bacterial infection. Viruses won't be affected by them. That's one reason the docs don't necessarily hand out the antibiotics for things like colds.

It's pretty normal to get a much higher resting heart rate with any infection. I guess it's just the body trying to fight it. I know it's not fun, and it doesn't make sleeping any easier. I remember when I got pneumonia just over a year ago, and my heart wouldn't slow down even by lying down. I'd guess that it's partly the whole autonomic dysfunction getting more out of whack because of being sick, and partly the infection itself. If you're on immunosuppressants it's probably very important to keep track of when you have a fever. I agree that you should go to the doctor if it doesn't go away quickly. I'm sure you'll be fine, but it's still important to be seen. Take care, and I hope you're feeling better soon!!!

Thanks guys for you well wishes. It turns out I won't be seeing the cardiothoracic surgeon until Monday afternoon, but that's OK. I saw my local cardiologist who gave me a prescription for DDAVP and reduced my ProAmatine, which I don't mind at all! (and told me to let him know when I'm in the hospital so that he can stop by to visit ) It's a beautiful day, but I have to spend the next several days writing intensively for my classes! I saw my CT scans and learned that it's a 1.7 by 3 cm nodular mass, and the likelihoods include thymic hyperplasia (which associated with the MG would basically be a benign tumor), thymoma, or lymphoma. They'll decide on Monday on the type of biopsy, and if they want to run other tests before performing the surgery. I'll keep you guys in the loop! Thanks so much for your support, Megan

In my POTS experience I've never heard of autonomic dysfunction causing lesions like that. But it definitely seems like the lesions or MS might cause autonomic dysfunction. I think it's probably possible to develop MS while not necessarily getting symptoms concurrently. Moreover, it would definitely be possible, even if uncommon, to have both POTS and MS at the same time, even independently of one another. Plus, I would imagine MS flares to spike POTS symptoms. I'm sorry you're dealing with all of this, and I hope you get some answers soon. XOXOX, Megan

Hi Bronwyn, Welcome!! I'm glad you've found us, even under such circumstances. I hope you are able to find some answers to your questions- looking around the DINET site and also searching the forum might be very helpful. We have all sorts of people here, with all sorts of types of autonomic dysfunction.... involving all different types of experiences with illness, doctors, friends family and work, and also in different stages of diagnosis. Chances are, if you've got a question, if an answer is out there, someone here can provide direction or at the least, SUPPORT! (although the support can be even more helpful!!!!) I came here almost 2 years ago, and it's hard to go a whole day without checking in on everybody! Take care of yourself, and welcome to the team!

Hi there! Soup is one of my favorite foods!! And it can have just as much sodium as the canned versions, because it can hold so much salt without being overpowering. I don't use recipes that often, but soups can be really simple to make. I usually start with sauteeing an onion in olive oil along with some garlic (to taste ), then some bell pepper, maybe some zucchini, carrots, cabbage, and veggie broth (or boullion with water). Maybe tomato, but I also like clear broth with whole wheat pasta and cannelini beans. Or garbanzo beans. or kidney beans. Add herbs and salt to taste. Vary the veggies to suit your preferences- but basically pretty much anything you have on hand will work! Another favorite: onion soup -sautee lots of onions and some garlic, add veggie broth, about 1/4 cup of soy sauce depending on the size of the pot (this for a medium pot) and whatever herbs and spices tickle your fancy (hint: rosemary goes great!). If you like the french onion style that is popular here, toast a bit of bread and top with cheese (I don't know what kinds they use, but I imagine provolone, brie, or pretty much anything you like will work) in the oven or toaster oven until the cheese starts to melt, and then put in the soup when you're ready to serve it. I like it with just some crusty whole wheat bread to dip in the soup. BTW I know that too many refined carbs can be unhealthy, but whole grains are a vital part of our diet. So whole wheat pasta is pretty widely available these days, and whole grain bread (IMHO Rudi's multigrain and oat bread is the BEST presliced), as well as yummy grains like quinoa, brown rice, kamut, barley, and spelt. Most of them cook like rice, except quinoa which takes only 15-20 minutes. So I hope you're not trying to cut grains out completely. Unless you have sensitivities to them, and then rice, quinoa and corn might be a good bet (hint: health food stores sell pasta made from these grains, too!) Last week I made a sort of Moroccan soup: onion, garlic, tomato, green beans, bell peppers, mushrooms, raisins, cinnamon, etc. It was pretty tasty served with couscous. Play around a bit- it's usually pretty hard to mess up soup.

That is so fantastic!!!! Congratulations!!! I hope it goes really well

Hi there, So for those of you who don't know, I had a CT scan about 2 weeks ago (it seems a lot longer!!) and they found a tumor behind my sternum. Having finally seen the pulmonologist, and him looking at the slides (finally) and referring me to a cardiothoracic surgeon means that things are moving along. I meet with the surgeons on Friday (out of town while I still see the electrophysiologist in the afternoon) to discuss what the procedure for the biopsy will be. At this point the pulmonologist is thinking that it's NOT malignant, based on shape etc, but I am not sure if they'll want to leave it in if it's benign, because it seems like if it IS benign, then it could be linked to my difficulty breathing and swallowing ? la Myasthenia Gravis. SO that's the story for know, and I'll let you know what else is going on!

Hi Amy, Thanks so much for checking in! I'm glad you and the baby seem to be doing so well, and I wish you all the best for the last several weeks. You and your family must be getting so excited! Take care, and I hope you can post some pictures when baby arrives and you're up to it!! Lots of love, Megan

I am not an expert on this, but I do think that while it's great that you're able to exercise some, finding a balance may help you maintain some activity while not getting so sick from it. Without a beta blocker, exercising does not happen for me, but now I find myself better at strength training than cardio. I have an amazingly awesome physical therapist, and I love her to death. Maybe physical therapy would help you find that balance?

I haven't heard of this condition. It makes sense that Florinef would help it, though. Wait, so you had to decrease your salt intake, Elegiamore? I know that my sodium levels are low to normal when I get random electrolyte panels done, despite the super-high intake and plenty of water, and it seems like they should be higher or else I shouldn't be so darn thirsty all the time... It would be interesting for them to study this more in we who have such a high sodium intake, too.

NO sorry, my ejection fraction is 61% below NORMAL when I stand. And every few months my cardio does an echo while I stand to see the change in how my heart is working. It looks pretty cool, actually. But no, i don't suppose it shows the blood volume when that happens.

I don't have any help, but I think it's ridiculous that lactose is such a common ingredient in medicines- surely there's an allergen-free alternative?

Yeah- if you get sick standing in line, I would definitely request a wheelchair!!!! It saves so much feeling lousy- between waiting in line and lugging around a bag, I don't think I've gone chairless (except for a few same gate connections) in about 2 years. And I bring my seat cane besides, fx if they just take you to the gate or waiting for your bags. It's a real lifesaver. Plus my family flew from Antigua to Atlanta on a plane that left over an hour late, and although we had to wait 45 minutes for the wheelchair, (Atlanta airport!!!ACH don't get me started), it was really the only thing that saved us missing our plane- (security, immigration, customs, bag recheck, and onward) that and my brother ran ahead as soon as we got to the terminal yelling hold the plane- lol. As to problem 2- I always wear support hose when flying. Aren't perfect, but i feel i'm at least doing something! Also, I drink more gatorade when flying, and although the liquids are always more of a problem lately, definitely take as much as you can. They usually let you bring empty water bottles through security, so you can fill them up in the bathroom (you know, $3 bottles of water are no fair).. and bring on as much as you can carry! Plus if I'm feeling lousy and there's no food, I'll drink tomato juice as well as water, cuz of the sodium. Anyway, best of luck to you!! (and as for the peeing thing- I always have to sit in the aisle- other than that, not much to offer!)

I just want to spread some more love, Melissa!!! Hope you're feeling better soon. Love and hugs, Megan

I can't speak from personal experience beyond supermarkets and airports, but there are some on here who use theirs on an as-needed basis, and sometimes they really don't! anyway, best of luck, and lots of love!!

They can do an echo while you stand and see how hard your heart is working and tell the lack of blood flow... but it sounds like your Doppler study might have shown what you're looking for.

I'm not exactly sure what you mean- when they do a stress test/echo they can determine the ejection fraction and figure out how much blood the heart is pumping during walking or whatever they have you do- I know my ejection fraction was 61% below normal last year- is that what you are talking abou?

So I pretty much talked with the pulmonologist for about 45 minutes and he ordered some blood tests. He had the CT report, but hadn't even looked at the scan yet! So I was a bit frustrated by that as you can imagine. He wants results of the tests before scheduling a biopsy, but I am to call him on Tuesday. Always learning to be patient, Megan

Well- very sorry that was such a useless trip! I hope you're doing all right. I've never had problems like that from midodrine, and I've been on it for 2 years almost. I hope if it keeps giving you problems that you get it figured out. Lots of hugs, Megan

I don't know if that sounds like one or not, but if you suspect a blood clot, I think you should head to the ER.

I find that very offensive!!! Good grief!

Hi, Thanks very much for checking in on me. My visit isn't until Friday. So I'm not so patiently twiddling my thumbs, and getting ready to move out of my noisy apartment, and such. My mom should be coming in next week. From what I've learned, the biopsy can be an outpatient procedure or it can take days in the hospital with a chest tube, but I will hopefully find out which on Friday. Other than that, all I know is anterior mediastinal tumor.... and that I have a really sore throat! LOL I'm not good at waiting, but luckily the week is going by fast. School is pretty much my major concern at the moment- you know, what if I can't graduate.. blah blah blah. Anyway, I will certainly update as soon as I know more. Thanks again! Love, Megan

Pretty much the only thing I've been told so far is that it's SO important to stay hydrated, especially if the chemo makes you nauseous. Other than that, making sure your POTS doc is aware of what's going on, and maybe he or she will have experience. I'll be sure to let you know if I learn anything else. I'm so sorry you're dealing with this. Please PM me if you want to talk. Love and hugs, Megan

Hey there. I had a normal B12 level last April, but I continue to take B vitamins, including a B12 sublingual. I think the pills will definitely be cheaper than shots, and I'd think the shots would be more appropriate for serious deficiencies. But see where you are and check with your doctor about what might work for you. Good luck!