sue1234

I don't want to see people argue I just want everyone to have a conversation about what experiences they have had, what seems to work for them, what doesn't work for them, what new research someone has read, etc. Let's be open to what all people have to contribute, and then make our own personal decisions. I very much welcome people talking about the specifics of how the body works and why it might be working out of kilter. If any of the Dys. docs knew it all, we would all be well and fully functioning. They can only do trial and error, as far as treatment goes. Our bodies just have to "prop" up with meds to help the symptoms , as best we can, until research catches up with our problem. I'm wishing everyone a great holiday!

Welcome back! I sure hope those three months fly by so you can get rid of those side effects!

Glad you are back home!!

What exactly is ANSAR? I've heard it mentioned before, but don't really understand how it works.

I saw him. He is very thorough and nice(staff is nice, too!). I went through a battery of testing, but, unfortunately, just recommended a alpha blocker. I am way too sensitive to alpha blockers(or betas, for that matter). But, lots of testing to see exactly what your body is doing.

Smiles, have you ever been checked for a pheochromocytoma of the bladder? I knew if you had one around the colon it could make you faint during a bm, so I just googled "pheochromocytoma+bladder" and saw a few articles about this happening during "micturition". One article talks about one person in particular that passes out when/after urinating. His VMA levels were high, where usually a pheo norepinephrine levels are higher. Check into it.

CM, of course, I answer yes to 75% of the symptoms and experiences, as most of us would here. I hope more doctors learn from their patients, as not all patients fit a "one size fits all" treatment plan, as most of us here show. What works for some, exacerbates or doesn't help for others. I am one of those.

I know you are so tired of being in hospitals AND so tired to be more ill than you usually are. NIH sounds like a good idea, like the poster said, just getting a doctor to refer you could be a hassle. I can't imagine how hard it is for you right now having so much trouble doing much more than lying in bed. Keep researching online and phoning local doctors to see if you can find ANY possible help. Keep us posted! And, family-wise, just remember you can only do what you can only do--and that's it.

CM, stick around and discuss with us all of our theories, questions, etc. I know I am always wondering about off-the-wall stuff, as a few others also do. It helps to 'hash out" these theories and how they could/could not relate to dys. I understand the ANS/PNS being the culprit to alot of our symptoms, and am always desperately trying to figure out what initially happened in my body four years ago to set it off.

I agree, to some extent, with CM about the foods we eat. We are farmers ourselves, working away from conventional farming. It takes a boat load of pesticides and herbicides for conventional farmers to grow their crops. AND, the seed used to plant these crops is becoming increasingly genetically modified, which could create something that the body doesn't even recognize anymore. Consuming those kinds of foods could send a body's immune system in overdrive. I am really thinking of going gluten-free, although my biopsy was negative. I have read way too many stories of people who are NOT celiac going gluten-free and realizing how wonderful they feel after a short time. I guess these people were gluten intolerant to some extent.

I asked my pharmacy about methylcobalimin a couple of years ago, as i was already taking the usual cyanocobalamin shots myself. They had never heard of it, and claimed they couldn't find it. Where did you find yours, a mainstream pharmacy? I have been taking B-12 shots for 10 years and wanted to change to the methyl. form.

All I know for sure is magnesium is known as the "relaxing" mineral. It works with calcium for nerve transmission and the workings of muscle(heart included). I take it, also, to help with my stomach, but it doesn't seem to help, as I have to keep taking other things, too.

This may have been my first symptom, even before I actually had my true POTS symptoms come along. I used to be able to tolerate the heat, and when I would go for a walk, I noticed my hands would swell. Now, when I get in 77ish degree weather(even if my house warms up), my first symptom is lightheadedness and my fingers start swelling. I just assume this is a POTS symptoms, but now I am not so sure. I have been reading on a MCAD forum, and swelling of hands is one of their symptoms. I also flush. Now I am wondering--is the swelling hands POTS or should I look more at MCAD? And, if it is possibly MCAD, then the Propranolol will only dilate my vessels more, correct? I would appreciate any ideas or if anyone has this same problem with the heat.

I am glad you found a doctor that helped you and is thorough with you. That is way more than half the battle! I wonder, what does he mean when he says "hypo-adrenic"? Does he mean low adrenals? Or low adrenaline(as in epinephrine)? Just curious. What does he do for that?

Thank you all for your advice. I made it through my first dose of Propranolol. I was wondering though, about what it will do when I get hot. I get lightheaded when I get in temps of over 77ish, as my hands start swelling and I can just feel my blood vessels dilating because of the heat. Won't a beta blocker be dilating my vessels also? If so, I don't know if it will help or hurt my heat intolerance. Anybody know?

Stacy, I finally found the picture I had seen yesterday of the red dots associated with vitamin c deficiency(well, actually full-blown scurvy, apparently). I would like to say I have almost that many dots on both entire legs and some of my arms. I would like to add that my legs are almost as hairy also, as I can't stand in the shower OR sit and bend forward! I have to wait until I'm having a rare "good" day and shave. I thought hair growth was supposed to taper down by the time I turned 50! Here's the link the the picture off of medicinenet.com: http://www.medicinenet.com/script/main/art...ticlekey=109873

Boy, Johns Hopkins sure would be good for you right now. But, I know how hard any more traveling would be for you at this stage. I sure hope they think to possibly get a phone consult with some special neurologist--do doctors even do that? They could forward your pertinent testing info and then the doctors could talk it out over the phone, huh? I hope someone thinks outside the box for you.

Okay, I knew it was coming out in the Sunday magazine edition, but it came out on their online edition yesterday. Now, keep in mind that I don't work because any stress just aggravates my POTS and gives me anxiety. Well, my job normally is to do email correspondence and paperwork for our business. As you might have guessed, we have had a ton of email since the story broke and I am trying to take orders and answer pertinent emails, AND I AM GETTING OVERWHELMED! So, I broke out the Propranolol that I had filled and had never taken to see if it would help calm down my system. I only took about 5 mg. to make sure it didn't make me feel weird, but so far not. My question is, does Propranolol seem to quell the stress hormones for you? I really need it to. I already take Xanax at bedtime and don't want to take it during the day.

T achy, the article info was indeed very scientific! But, I did get the implication of it, that vit. c is necessary for the enzymatic workings of collagen synthesis. This kind of goes along with what Erik was talking about, that in certain conditions certain nutrients might be used up in a faster manner, thus leaving us low in the long run. I thought it was interesting, and mostly why I referred to that article about Scurvy, in the section titled "Physiology", how it describes all the areas vit. c is involved. I didn't know previously that it was used as a co-factor for carnitine, aldosterone, norepinephrine, and corticosteroid synthesis. I knew it was used by the adrenals, just never thought about what for. I could see when some "wholistic" physicians tell us that we need to build up our adrenals, such as Notgivingup is now doing through her doctor. It might just be that we are lacking in certain nutrients, through disease using it up too much.

Rene, sending good thoughts your way! Thank goodness you are having IVs while doing the gi preps!!!

Jump and Futurehope, that's interesting that you both have symptoms and were low in vitamin c. I think, if I am low, it is a result of malabsorption. I have had many years of "IBS", predominantly diarrhea, and I'm sure I was not getting good absorption of my nutrients. I did end up with a vit. D deficiency and crumbling teeth, and osteopenia, all while still getting some sun. I think I just wasn't absorbing and then not making what my body needed. Maxine-that is interesting about the amino acid. You'd think they would address it if your level was ZERO and it pertains to your disease process! Did they test that because of the dys?? I know y'all have all mentioned being tested on this stuff, and I've never had my nutrients tested. I forgot to add the link to what I had read: http://emedicine.medscape.com/article/125350-overview

I know I am always throwing things out here, but I've always wondered about vitamin C and its possible involvement. Vitamin C is directly involved in collagen synthesis, and guess what alot of people on this board have--A COLLAGEN DEFECT DISORDER! Also, I read something new about vitamin C today that hit some more nails on the head. vitamin C is also involved with carnitine in mitochondria making energy. AND, it is involved in aldosterone production/usage(?). So, I guess my point is, vitamin C is involved in alot of things that involve dysautonomia. I was looking it up and found a picture of someone's leg that has a deficiency(scurvy) and I have those same red dots all over my legs and alot of my arms. I've had those red dots for almost 8-10 years but just thought they were some odd "normal". I've never asked a doctor what they were. I am now going to test myself for my levels of vitamin C(purchase my own lab test) and see what my levels are. I am determined that one day I'm going to figure my problems out! Anyone else have red dots on their legs/arms?

Thanks for all the suggestions. As far as kefir, yogurt, or probiotics, those are a big no-no for my system! I have tried them off/on over the years, and consistently they make my bloating way worse, and for weeks til it settles down to "normal" bloating. I actually have a bm everyday or almost, just it's like I don't pass gas(sorry, way TMI!!). It just sits and sits, and I burp and burp. It used to go down by morning but not anymore. It stays with me 24/7 now. The only time I have not been bloated was when I was on my 3-day fast. All the bloating went totally away and it felt wonderful. It lasted for a couple of weeks, then came back. I don't understand why I would be ok for a few weeks after the fast, as I was eating again. It is like things slowly start backing up until it can't ever catch up, maybe?? I go to the gi doctor tomorrow. Does erythromycin move gas along?

I used to use Reglan, but of course, with all the problems related to it, I had to get off of it. But, my gastro NP didn't offer anything to do a similar job. I have gotten so bad these last few days, I broke out the Reglan to help. I had tried Domperidone last year, and I didn't notice ANY help from it. So, what else is there? I am desperate--it makes me so short of breath. I have lost 12 lbs. in the last 2 months(on purpose) and I still have to wear my original size pants, as my waist size bloats up that big. The hip-part is so baggy now.

Funny you should mention those symptoms with Levoxyl!!!! I have used different thyroid meds over the years, and EVERYTIME I tried Levoxyl, I would get drops in my blood sugar, documented with my glucose monitor. I have no earthly idea why Levoxyl would do that, even on the very first dose. Synthroid, Armour and Unithroid never made my b/s drop. I would LOVE to know why it does that. By the way, I settled on Unithroid--it gave me the least side effects.