Beccapooh

Nope, I'm going alone. Nobody said anything about having someone to drive me home ?? What should I do?? I already have my one girlfriend watching my girls and my husband is trying really hard to get home in time to relieve her, as she has somewhere else to be later this afternoon. My Mom is useless (long story). My other sister is in Arizona on vacation. All my other friends work!! ARGH! Am I screwed now? Will they make me reschedule the test or what? I hate it when you don't get all the information the first time around, you know?? So I'm drinking water right now, because it's technically 5 hours until my test and if they're going to have any chance at getting an IV started I'll need the fluid. I wish that they would have told me that they were going to start an IV. I would never had gone through with scheduling the test. It's THAT hard for them to get one started!! You can imagine how fun my IVIG treatment was??!?!?!!? I'll let y'all know how it all goes ASAP. Thanks again, everybody!!! Rebecca

I guess I missed the part about having an IV implanted. Now I'm totally freaked out!!! They can't ever get an IV started in me, even when I'm well hydrated and they told me that I can't drink anything for at least four hours before my test. I only get up at about 8am and my checkin time is 12:30 so, huh, I have to leave my house at 11:30 to get there. So, I guess that I won't be drinking anything tomorrow at all!! How do they expect to get an IV into someone that's so dehydrated, huh? Geez.........now, I'm going to be all freaked out.....about the stupid IV!! ARGH!!! Should I just be drinking like a fish tonight then? If I do that, I'll be up all night peeing!! LOL I took my Mestinon today, but I won't take it tomorrow. They didn't even mention that, but they also didn't even know that I was on it to begin with, I suppose. I'm not very confident that my GP told them that I was taking it and since I STILL haven't heard back from my Neuro, he hasn't had anything to add to this little senario. Great............now I'm even more scared then I was before. What's the IV for exactly? Fluid or just a port to give me drugs or both or what??? I've gotta be honest, I'm fully terrified of this test. I'm afraid that it'll be positive and I'm afraid that it'll be negative. I don't know what's going to happen and I just have a bad feeling that it's going to be, yet another, dead end for me. I've had every single symptom of Myasthenia Gravis, too and that's still under scrutiny by three different Neuros. The can't seem to agree on what EXACTLY is the definative DX tool for MG. Some days I just wish that I would just drop dead and then someone might believe me!!???!!! Thanks, guys. You're the best!!! Rebecca PS - What's NCS???? Something else I should know about, I assume.

From everything I've read/heard the TTT only takes about 45 minutes, but when I asked the nurse how long to allot for the test and she said that I needed 2-3 hours. Could this be right? I'm just asking because I need to find child care for my girls and I'm really wanting to know what the extra hour or two could possibly be for? Any ideas?? I know that this is a subjective question and all, but I'm still curious as to all of your experiences. Thanks, as always, in advance for your kind words. Rebecca PS - my test is for tomorrow, so I'm kinda in a crunch here!!!

I hate to sound like broken record, but............ I'd like to have four, one for each member of my family, which would be 1 XL, 1 L, 1 size 12 (kids) and 1 size 5-6 kids. But, again, I might be wanting to buy some for my sisters and father, but it depends on how much they are what they look like.....blah, blah, blah. Rebecca

***WARNING THIS IS A RANT***** Why oh why is every single Neurologist I've ever been to such a pain in the neck (or body part of your choice)?? I've been trying to reach my "current" Neuro about this whole POTS thing for well over a week now. I thought that it might be nice to keep him in the loop and I was also hoping that he might know something about it so that I wouldn't have to change Neuro's AGAIN once I'm officially DX on Thursday. (According to my PCP, who is getting the EKG results faxed to him daily, this is pretty much a slam dunk. Although, I know better than to hang my hat on that, yet!!) Anyway, I can't seem to get the guy to call me back!!! This is the reason why I switched to him in the first place. My last Neuro never would return my phone calls either. Then, to top it off, I've left him my phone number about 10 times (okay, exageration, more like 4) and he called me back yesterday on my mobile number. Now, for a normal person this might be fine, but I'm a stay at home Mom and only have my cell phone on if I'm out and about. It lives in my car for God's sake. So, of course, I got the message this morning that he left last night........ON MY BLOODY CELL PHONE!!!! So what do I do? I call him back at his office and leave my message AGAIN. Do I hear back from him? NO!!!!!!!! It's after five now and his office is closed (I just called him). The worst part is that the doc that's getting all my results and that is my PCP is literally two doors down from Neuro in the same Medical building. They nearly share a wall!!!!! However, I don't think that it's my primary doc's responsiblity to call my Neuro for me, is it??? I know that I'll need follow up care with a Neuro regardless of the outcome of my tests this week. I still have a Thymoma and there's still a good chance that I have MG, too!!! I really don't want to switch docs again!!!! For the love of all that is holy, is there not one good Neurologist in all of Colorado???? Rebecca

NO FREAKING WAY!!!!! I've had olfactory "hallucinations" for years. I always smell something nasty, too. I smell garbage, poop, rotting meat, etc. Obviously, no one else smells these things. I just assumed that I was crazy. I had gone online and couldn't figure out what to call it. LOL.........so, clearly, I never got anywhere with my searches. Do other POTS folks have these, too? IS it a symptom? Should I tell my Cardiologist about it when I meet her on Thursday. I need to start making a list because I've been sick for so long and I've just gotten used to all the weird things that my body does (that other's don't) I'm afraid that I'm going to get in front of her and not have anything to say. (Score one for BRAIN FOG, aye??) Rebecca

But, have you ever been on anitbiotics before? You've been on these for 3 months???? Is that safe??? Is that required?? So, the IV antibiotics I've had for surgeries, etc. wouldn't have treated it? I'm somewhat confused about all this Lyme stuff, to be honest. I don't understand how I could have had something for all these years and not know it and no doctors have known it. It seems a little far fetched to me, but, then again, I think that I've had POTS for at least 16 years and no one ever believed me, so.................. Rebecca

Oooh, ooh, good questions. Everyone keeps on telling me to be tested for Lyme, too. I was bit by a tick years ago (I mean....YEARS ago) and I've been on antibiotics, even via IV off and on ever since the bite. Is it even possible for me to still have Lyme? I don't want to pay for the dumb blood test if it's impossible for me to even still have Lyme. Good.....good question. I was going to ask the same thing and in my foggy mind, I forgot. Then I remembered and then, by the time I logged onto the computer, I'd already forgotten what I was doing on the computer in the first place!!!!!! Rebecca

Oh, gottcha. Yeah, I seem to type like I talk. I wasn't being literal, I'm sorry. I was simply asking out loud, if all my wacky symptoms could be POTS. I'm also keeping my fingers crossed that it's not something scarier that would require immediate surgery. My life has seemed to go that way; it takes them forever to figure out what's wrond and then BOOM it's suddenly urgent and I need surgery!! Even though I've been telling docs for years that I think something is wrong with my heart; no one ever listened until I became so ill I couldn't function!!! I ended up having an EMERGENCY HYSTERECTOMY for the same reason. Have you ever heard of a woman having an emergency Hyster that wasn't in labor and bleeding out?? Well, that person would be me!!! (Although I did have a severe bleeding problem when I had my last child, ARGH!!) I'll try to be more careful in the way that I type, but I can honestly say that I'll probably run into this issue again as, like I said, I tend to type as I would think or speak. I know that not being able to hear a tone of voice makes these forums a breeding ground for misunderstandings. Again, I'm sorry for any confusion!! Rebecca

I'm sorry, I'm not sure what you mean? I am waiting to get a DX. Did I say something that implied otherwise? My mind is kinda "OFF" these days and I'm sure that I could have said something and didn't mean it the way that it sounded. Sorry! I'm not expecting anything to happen prior to Thursday. I'm just still taking my Mestinon. I've been DX with MG by two Neuro's and un-DX with it by another. Regardless, the Mestinon helps some, so I'm going to keep taking it until something else happens. Rebecca

Lois- My husband and I have had this same conversation time and time again. He's so sick of them blowing me off and just sending me home from the ER, ICU, doc's office, wherever, with yet another anti-anxiety med. I think that I've been on every single one they make, plus about 75% of the anti-depressants. I've had severe SOB, chest pain, shakes, fainting spells (even twice IN THE DOCS OFFICE!!!), seizure "like" activity, etc. etc. since I've known my husband. We've been married nearly ten years now!!! And I've been the one the push the heart issue AGAIN just recently and am finally getting somewhere. I believe that this is happening mainly because I've already seen an ENT, speech therapist, pulmonologist, neurologist and PCP and have had about a zillion tests run. I've been being treated for MG for over six months now, with some improvement. The treatment that I was given was Mestinon and IVIG. Funny........what drug do some of y'all take? Mestinon!!! I've asked all of my docs why Mestinon would work on me if I didn't have MG (as the blood work for MG came back normal) and I was told that the only disease that Mestinon worked for AT ALL was MG. I was basically told that I was lying about feeling better with the Mestinon because I clearly didn't have MG (which isn't even true, the blood work alone doesn't make or break a DX!). My doc suggested AGAIN that I try a new anti-depressant/anxiety med! My husband on the other hand had some chest pain and was rushed into to a Cardio guy and lo and behold he has a hyaetal (spelling?) hernia. You would have thought that he was about to die!!??!? I think that something should be done for those of us that happen to be FEMALE and ILL. What a concept, huh? My husband was somewhat surprised that my doc just told to take it easy over the weekend and that I'd be fine. I'm seriously waiting to have a full blown heart attack and die, right in front of my children!!! Rebecca

Lois- It wasn't my doc that suggested the blockage thing, it was my husband. My doc is just a GP and doesn't really know a whole lot about the whole heart thing. I didn't experience all of those symptoms with that one fainting spell. I'm sorry if it came across that way. What I was trying to say is that my heart has done all of those things within the last three days. He was just commenting on all the readings that he's been faxed by the monitoring company. That's been three days of monitoring that showed all those items, not just the one episode. Again, I'm sorry that I wasn't clear. I'm sure that that is the only way (reason) why he said that I'd be fine over the weekend. I'm sure if anyone had all of those symptoms, together, in the course of 90 seconds (how long my monitor records for, after I press the button) they'd probably be dead! I was just wondering what EXACTLY POTS means. I know what the "definition" is and I know what the web sites say about it, but, it really just seems to list the symptoms on most sites and I know that I have 99.9% of those. I was more wondering about the true "features" of POTS. What, exactly is wrong with our hearts, etc? I know that I can and will ask my Cardio on Thursday, I was just hoping to get more information prior to my appointment. Mainly, I hate going into an appointment feeling so ignorant!!! Rebecca

I've finally captured a fainting "spell" on my heart monitor, after wearing it for two days without one!! My husband ran over and pushed my little recording button right after I fainted. Good thing he was home, aye? Anyway, after I called the company and transmitted my recordings they told me that had to call me doctor right away and to wait for his call. I wasn't worried, I just figured that it was protocol, you know. So, my doc calls me back in like two minutes and he says that "I've been keeping my monitor busy, haven't I?" I kind of had to laugh because I don't even record every "episode" like they said to because I feel like I'd be pushing that bloody button 100 times a day!! Alright, so that being said.....he procedes to tell me that I have severe Ventrical Coupling, chronic PVC's, the craziest heart beat he's ever seen, sometimes Tachy sometimes Brady; I'm skipping beats and then doubling up in the wrong places. Okay NOW I was getting worried. He told me to be careful over the weekend, stay out of the heat, don't push too hard exercising or anything and that I'd be seeing my new doc (the cardiologist) this Thursday anyway, so I'll be fine. Fine?? FINE!!??? I don't remember the last time that I felt fine, no less WAS fine!???!?!!? Can anyone tell me if these heart beats, rates, whatever are normal for POTS? My husbad (the ex-ER Nurse) is now stating that he thinks that it might be something more than POTS, ie. a blockage or something. Does anybody have these same heart issues? I have all of the symptoms of POTS though..............can't it just be POTS??? PLEASE???? I have a really crazy "symptom" but I'll post it separately. Rebecca

Great question!! I've felt the same thing. I feel really, really tired after I eat and I've also been known to get outrageous pain in my chest and legs. I'm curious to know the answer. Thanks for asking such a wonderful question!!! Rebecca

Hey guys, thank you!! It's nice (for some reason) to know that I'm not alone in all this weirdness. I've been ill for so long that I can't even remember what it feels like to be normal!!! Then, the proverbial POOP hit the fan last summer and I've never been more ill in my whole life!! I'm still waiting to "HEAL" and return to normal (whatever normal will be for me, aye?). I'm excited at the idea that I might actually get some treatment (other than Mestinon and IVIG) that helps relieve some of these persistent symptoms!! I know that being excited at the idea of being DX with a disease is (should be) horrible, but I also know that y'all understand what I mean, right?? Anyway, thank you all for being so kind and reaching out to me like you have. I have been living on the MG Forums for the last year and it feels kinda weird being someplace new. Y'all have embraced me and made me feel welcome, so....here it goes again........THANK YOU!!! Rebecca

Okay, this is horribly embarrassing but I desperately need to know if anyone else has this issue. As delicate as it is, it's very GROSS Does anyone else seem to sometimes have trouble controlling (gulp) their bowels? I seem to be getting less and less control over them. I seem to have a lot of rectal pressure all the time anyway so I'm having a hard time "keeping things together" if you know what I mean? Am I crazy? Also, I've noticed lately that I can look at a word and think something totally different. It's along the same lines as the word I've read, or contains similar letters, but isn't the right word. For example, the other night I was a dinner with my sister and my girls and I read the back of a guy's shirt and I actually said outloud "Oh, I've been there....Tortilla!" My sister looked around and said "WHA??" I said it again "Tortilla" and pointed to the guys shirt that said "Baja". Now, I know y'all might not get the connection but I was trying to say that I've been to the Baja Pennisula in Mexico. Mexico - tortilla. Get it now?? I'll look at a car that's green and think to myself "What a pretty blue car." PLEASE GOD HELP ME!! AM I LOSING MY MIND? It's also quite hard to type because I have this weirdness where I can't actually type and talk or think or anything, I have to focus on typing. Now, I'm a multi-tasker to the Nth degee, but now I can't seem to walk and chew gum at the same time! I forget people's names and appointments that were made. I'm starting to become afraid to leave the house because I'm afraid that I might poop in my pants and forget how to get home again!!!!!! Rebecca

No judgement here!!! I've been smoking off and on (mostly on) since I was 13.....on my last birthday I was 34, so............like I said, who am I to judge??? I wonder if that's why our chests hurt so badly? I'm still waiting for my "official" DX, as I've been DX with MG already, but now they're second guessing that DX. Apparently ALL of the symptoms of MG are they same as POTS, but POTS actually has a few more. Those "few more" were the ones that I have that didn't "fit" with MG. The funny thing is that the medicine that they give MGer's is Mestinon and IVIG. So I have been feeling better. Then all the blood work for MG came back normal (???). Anyway, due to the pain in my chest I had a chest CT and it showed a Thymoma. This is indicative of MG, so who knows, huh??? I just think that it's weird that the meds I was given for MG are what made me feel so much better and that I might have never even had MG at all!!! My chest STILL hurts most of the time and I do have scarring on my lungs and I do smoke and I do get Pneumonia all the time. Weird, weird. weird. I hope that we all (someday) get cured and start to feel better!!!! Rebecca PS - I get Pluersy, too!!

I have some similar issues with my chest X-ray. I'm thinking that it's because I get Pneumonia at least once a year, for the last 18 years!! Does anyone else seem to get Pneumonia a lot? Do you get chest colds or something more severe very often? Do you, did you ever smoke? What's the doc tell you it could be or be from? I also have smoked off and on during my life, so that doesn't help, I'm sure. I'll be interested to hear what folks have to say about this one, aye? Rebecca

Not yet. My TTT is next Thursday (I just got the call from the Cardiologists office today). All I've had so far is blood work and I'm wearing a looping EKG machine thingy. LOL - Is thingy a technical term or not?? However, I've had so many of these symptoms for so long that my PCP is somewhat embarassed that he never noticed them all together. He's been giving me anti-anxiety meds and telling me to "de-stress" my life for about five years now. I had, what we thought was, an MG crisis in March where I was nearly intubated due to breathing trouble. I've got tons of other symptoms, other than SOB, too, but I don't want to bore everyone with my baggage. I'll wait for the absolute DX to vent I suppose! Speaking of TTT, how was that test for everyone? My Cardio says that not everyone faints, but you can still have POTS. Is that true? How in the world?!?!?! Can some of you tell me your experiences, please?? Rebecca

Well, I live in Colorado but I recently got the handicapped plaquard because of all my "issues" and I just went down to the DMV with the form (found online or at your doctors office) that my doc had filled out. It was super easy and it's free!! Maybe contact your doc and see if they have the forms. If not, I think that you should be able to print it from the computer yourself. It seemed like a national form, not State specific, but I could be wrong. I only use mine when needed. Just because you have it doesn't mean that you're disabled or crippled in any way. It just means that you NEED it!! Use it when you go to work and then put it away, if that makes you feel better. Mainly you need to take care of yourself and not "worry" about what others will think or feel about you!! Good luck on your journey! Rebecca

I go for my tilt table test next Thursday. I've had a ton of blood work done and I'm wearing a looping monitor as we speak. I've had syncope for years now with no explanation. As of last year, I've started having severe dysphasia, severe fatigue, muscle weakness, speech problems, pain in my chest, pressure in my chest, urinary and bowel issues to name a few. I've been tested for LEMS and MG and although some of the tests of come back positive for MG, my docs still don't agree that that's what I have for sure. At least, they don't think that that's ALL that I have. A lot of my symptoms aren't MG symptoms at all. Anyway, after speaking to a Cardiologist and 3 Neurologists and my family doctor (who after looking back over my file for the last 10 years, feels kinda bad that he hasn't sent me to a cardiologist sooner!!) and they've all come to the conclusion that my symptoms more fit with POTS. I've even had blood tests over the years that have pointed to something of this nature. Namely some ANA test?? At any rate, I would love any feed back that y'all have for me. I'm reading posts on the site as quickly as I can, but I really need to support right now. I feel like I'm starting all over again with the whole DX issue. It was nice to "have MG" because I wasn't labeled as crazy or lazy anymore. But, now I feel like my friends have about had it with all the different "things" I have (or don't have!). I'm getting to the point where I'm afraid to tell anyone anything anymore for fear of being teased or not believed. Thanks, in advance, for all of your support!!! Rebecca 34, Female Reunion, CO