morgan617

I think gastroparesis is like wearing a holter, you always get the test on a day the problem is not being a problem! I'm quite certain you can have days where things just aren't as cranky as other days and it's unfortunate that one test can rule out everything. My son had a small bowel follow through, where he had to drink barium with Nestle's quick in it. He tossed it in about ten minutes and they tried to force him to drink it again. I told them the fact that he couldn't even hold the stuff down should tell them something and refused to let them give it to him again. His report stated "non compliant" Well I think the inability to keep stuff down is an indication of "not normal" but that's just me. So, I would not discount it based on one test on day your gut just decided to fly right. morgan

Many normal people who stay well hydrated have prominent veins all over. Mine can be so flat you can't see them one day and the next look like aliens have invaded. I wouldn't worry about it personally, however it is kind of nice when they are prominent and you need an IV. I have one site they can poke and it would be nice to have more options... morgan

I am not sure what's happening here , but I sent a question to the periodic paralysis assoc doctors in a segment called "ask the experts." It said I needed to be patient, as they had lots of emails. The next day, yes that's what I said, the very next day, I got a response from the MEDICAL DIRECTOR, himself, stating he wanted to talk to my doctor and contact him, not the other way around. I know only a few of us have PP here, but it reeks havoc with the autonomic system, I have told many PP people on that forum to visit us here and see how well they fit in. So most of you won't know about periodic paralysis, but I was shocked. I have been having somewhat of a rough time with my primary, mainly because he's so frustrated that neither he nor I can get any help for me. I called his office and asked if it was okay for this PP doctor to call and they said, it would be wonderful, if it would only happen! They were as dubious as me. He has called mayo, Vandy, NIH, you name it, and never even gets the courtesy of a response, even though he leaves every number to reach him, including his home phone. So I emailed Dr. L in New York on Thursday afternoon, told him my doctor had Fridays off, but would would really appreciate hearing from him. He called him TODAY! I got an email from the PP doc telling me he had discussed my case with my doctor at 1 pm and my doctor would stay in close contact with him! They both believe I have a type that affects the heart. So while I am a bit nervous about seeing my doctor, because he wasn't specific about the conversation, I am also anxious to see if there is a plan in place when I go. So, now two times, things have happened like I prayed they would. My appointment is June 10th, so it will be very interesting to see what happens, but this is the very first time any doctor has made any effort to contact my doctor and help me in any way. Some of the oldies here know how hard I have tried in the past to get help...so this is a huge milestone for my doctor and me...please keep good thoughts and for those that pray, maybe a little one that my visit goes well, and that I might finally get a bit of relief. I have gotten so weak, I can not get up off the floor any more. I have to be picked up, as my legs and arms have grown so weak. I will hope it is not permanent and then I can write more too. Thanks for listening! hopeful and in shock for the second time morgan

Since I can no longer walk in a straight line, I can't imagine what I'd do on a bike! I'm really happy for you Ernie and hope you gets lots of enjoyment and freedom with it! morgan

I'm really glad it went so well for you missy! I'm beginning to think we should just see gastros! morgan

Hello! Well, my Dave came through and got a wireless hooked up for me. Every time he installed a security system, it all crashed, but he finally got it working. He does love a challenge. So you all are still stuck with me. The move was brutal, but only in a physical sense. It seems I lost so many things at that other house (including our excellent credit) but this is a nice little house. We got defrauded by a mortgage company and then they stopped Dave's overtime, so there you go. 3 different financial loan officers have said we need to sue the mortgage place, but at this point, I figure they must really want my piece of nothing house, so they can have it. We are doing a "short sale" where we have 90 days to sell it and then they foreclose. This is just another part of the illness process for some of us, but once we made the decision, we actually felt better. Now Dave doesn't have to come home, chewing off his fingernails, because he's not working a thousand hours a week. He can have his days off, and it's been really nice to actually spend time with him. Of course we are so tired and I have been so sick from moving, but am looking forward to pulling this house together and making it a home. I will move again when my body is stiff and cold!!!! And not one minute sooner. I'm glad I still have you guys......missedyamorgan

I used to be incredeibly independent and stubborn, but those days are long gone. it's not worth the pain and suffering. I am fortunate to have a supportive family, I have no idea what i would do otherwise. I just let go of most of my pride a long time ago.....morgan

Ernie, it looks like so much fun (my move is almost over and I have my computer back) I used to see a lot of people using these types of bikes, but not so much now, maybe because they make indoor recumbents now...but how good will all that fresh air feel! Have fun and be careful sweetie! morgan

Oh Corina! I am so sorry this has been going on. You should just go in as an emergency. The frustration is so hard on our bodies, and it is doubly bad when you see a light at the end of a loooong tunnel and then someone keeps trying to shut it off! I hope you get some help soon! Sending you hugs sweetie! morgan

Thanks so much everyone. We are in the middle of moving...It's a long story, about how illness and the inability to work kills you in more ways than one. I have been thinking for a week at least that my computer is going off, but Dave waited till the last minute. This will be my last post, I think. The house we are moving into is old and he wanted us to have our computers upstairs together and Jake have the basement, but when the guy came there was no phone jack anywhere that he could use! He finally found some wiring in the basement, but that means the modem has to be there and he will have to share the family room down there with Jake again. There is no place he can place a jack upstairs to accomodate my computer, here we owned, so Dave drilled a hole in the floor, but you can't do things like that in a rental. He is figuring out if I can get a wireless, but not sure we can swing it. If you hear from me after tonight, this is about the only thing left here, you'll know it happened, otherwise, I'll be seeing you. If you don't hear from me, I love you all, and could not have made it without your support all these years. I just keep thinking about all the people who say I want my life to be like this.... I will wish you all the best, with the hope that I can wish it all for you again! byebyemorgan

Levsin, like Nina, but it does loosen my stools a bit. However, I prefer that over the cramping. It can also make reflux a bit worse, so just keep that in mind. But other than that, no problems...morgan

It kills my stomach, but doesn't seem to affect anything else. tylenol doesn't help me at all for anything, and I hardly ever take advil, but when I need something, it's what I take. Since anyone can have reactions to anything, it certainly can't be ruled out. I'm sure it's not panic either. When I take my potassium, I have the exact same reaction, also in about twenty minutes and then it passes too, just like yours. I just ride it out, because I really need it, but it sure isn't much fun. Sometimes it's not the med, but the other stuff in it. Maybe you could try a different brand. All stores have their own brands of the same drug, but different inactive ingredients. So maybe it's one of those, as opposed to the ibuprofen itself? Kind of like immunizations. The virus is dead, but people react to the preservatives the virus is in, that type of thing. It's worth a shot. so to speak...good luck sweetie...morgan

Endure, It is the drug used most commonly for any type of conscious sedation, so if you've had a gastro, colonoscopy, or anything where they put you in a "twilight" sleep, you've probably had it. I am sensitive to everything under the sun, I swear, and I get this drug every 8 weeks for my esophageal dilations. I have never had any problems with it. I got it for my ablation and my pace maker too. It sounds like they are taking every precaution to ensure that you are well taken care of. I couldn't even imagine a doctor being willing to do this for me. If I thought there was a chance it could improve the quality of my life, I would go for it. They will have all kinds of things at the ready and they will not give you a large dose and I'm sure they will give it in a way that it wears off the quickest. Almost every pain med is a scheduled drug or opiate. But given in the right doses, if needed, can greatly improve the quality of your life. I don't know why you need pain meds, but the patches seem to be very effective for people with chronic pain. I certainly do understand your trepidation, believe me, but if my docs were willing to go to these lengths, I would try anything I thought would help. But that's just me, remember! Good luck with whatever you decide, sweetie! morgan

I get it a lot from reflux. You can reflux up into your vocal cords and actually burn them. I don't really get sore throats and stuff either, but when the doctor looks, he can see that my cords are inflamed. You might check that out....good luck sweetie, morgan

I had a colonoscopy and my usual dilation last week. He gave me a lot more of the meds (I barely have any for my dilation, I'm so used to them, but the colonoscopies hurt more and take longer) but he was looking down my throat and I was feeling the scope squirreling around in my gut, so was awake and the nurse said, I don't see where it's tight enough to be a problem, and I don't see a big stricture and yada yada.. At last people.....my gastro said, in a very brusque manner, "You have no idea how sick she is and her motility is completely shot, even the most subtle stricture is disasterous to her" The nurse was back peddling at the speed of light. He never ever gets annoyed at people. Now, mind you...they think I'm sound asleep and not hearing this conversation, so he is not doing this for my benefit. I told him later that his validation was all I ever wanted. He said, but it was just the truth. I said, but to hear you defend me to people, you will never know how that makes me feel. I think it finally hit him at that moment. I am not asking him to cure me, just to believe me, validate me, and not let other medical personel get away with that poop. It was so great and since it happens so rarely for me, I had to share it. He is my favorite guy forever.....(he did say I am supposed to be ASLEEP for these, and we both laughed) validatedmorgan

There are real friends and then there are fair weather friends, there if they need you, gone with the wind when you need something. People will only go as far past your boundaries as you let them. If people get hurt and make you feel guilty, or you make yourself feel guilty, that is called manipulation and not friendship. It is very very hard for me to say no to people, but my real friends (of which which I have very few left) would never put me in these kinds of positions. I would rather have a few "real" friends than a lot of "conditional" friends. Maybe the gal out of work for 4 years doesn't do anything with her life because she never has to, so maybe you aren't doing her any favors by allowing her to continue this behavior and telling her no might actually help her. You never know....morgan

I have meneire's that was diagnosed unequivically (a special test) about 15 years ago. Mine is also bilateral. I cut out salt waaaay back then, but didn't develop severe problems with pots till about 8 years ago. I have vestibular type, so don't have the classic hearing loss that some do, but do have some loss. All I can tell you is my experience. POTS is so disabling, but I would rather suffer with those symptoms than with a full blown meneire's attack any day. With pots, you usually at least feel better when you can recline or something, but nothing helps my meniere's which can last for hours and leave residual attacks for days. I call them after shocks. My pots can be a major bummer too, rendering me helpless at times also, but it's just not as awful as a meneire's attack, for me. I can't take diuretics or anticholinergics, which is what's prescribed the most. I take 1-2 mg of valium a few times a day, and my dose has never changed, unless I'm having a big flare and then he puts me on prednisone till things calm down. So, to me personally, it is not worth taking the salt. I think my body has become very accustomed to low or no salt, because I grew up that way too. My mom had kidney disease, so we never had salt in the house. Not taking salt doesn't seem to affect my pots (but that's just me, and I never took it because of the meneire's and hypertension,) but using salt will get me every time. There is also a big difference between being dizzy and having true vertigo, with a spinning room and rocking boat and puking till you want to die scenario. I have days where I am dizzy and I relate those to pots, my vertigo days are very very different. Caffeine is also a very big trigger for it, so I gave that up too. Of all the things I have, I really think my meneire's is about the worst and I will do anything to prevent attacks, or at least tone them down as much as possible. Most everyone here uses a lot of salt, but I never did it, even after I was diagnosed. It's a rock and a hard place and you just have to decide which is the lesser of the evils for you. I can tell what it is for me, but you have to decide for yourself which is worse. Good luck sweetie, I feel for you! morgan

I'm going away for awhile guys and for those who care, just wanted to let you know. My life is pretty much in the toilet in just about every way it can be and it's very hard to remain positive and try to help people, when my own life is a shambles healthwise and certainly not getting better, just worse, no doctor wants to help and everything not healthwise is in a shambles besides. You all take care.....morgan

I hate to add to the anxiety thing, but I went through that a bit myself. I was so scared I would collapse in public, that for a while, I stopped going out, or stressed myself to the point I couldn't. I just got really annoyed at myself and forced myself to do it. It happened (falling and fainting) and still does, but oh well, you just learn to deal with it. Figure out triggers, like certain types of light, lots of noise, things that over stimulate the body and stay away from those things, and do the things that don't seem to trigger the problems. Sometimes you have to try a few meds before you find one that works well for you. There might be a different Beta blocker that works better than toprol for her. The only one I can tolerate at all is atenolol, which is as old as the hills. Some of the SSRI antidepressants have helped people a lot, and sometimes a tiny dose of an anti anxiety keeps the autonomic system in a little better check. I also go to therapy. This is a very stress provoking illness, and contrary to what most in the medical profession believe ( I was a nurse for 30 years) no one enjoys collapsing in public. There has been many a time, my hubby had to get me to the car and more than once I didn't make it. We can become a bit obsessed by this illness. But for many of us, the illness IS progressive and very debilitating, so I do not want to imply in any way, it's a psychosomatic thing. It is hard to deal with though, especially for people who haven't been diagnosed for long. It very well may be she is too sick to go out much, but that is best sorted out by a good therapist who understands she has a very real illness, and what affect it is having on her emotionally. And you. From the way you write, it sounds as though she seems to talk herself out of going out from the anxiety of "what ifs" This would be an area a therapist could help with. I think almost everyone on this board has seen a therapist, or is in therapy, so it's nothing to be embarrassed about. My husband goes with me too quite often, because this is as hard on him emotionally, as it is me, physically and emotionally. I never go out, ever, without a transport chair, but my illness has been very progressive and I don't recommend getting one until there's just no other choice. If she does pass out or grey out quite often, you might consider getting a little transport chair that fits in your trunk. They cost between 100-200 dollars, weigh about 15 pounds and will fit just about anywhere when folded up. I assume she is unable to drive, or chooses not to. I stopped in 2005, for fear I'd hurt someone else. But several people on the board still drive, because they never pass out when sitting. I had 2 concussions, broken ribs, toes, and vertebrae before I would use one, but I made the decision, because my hubbs hurt his back trying to pick me up off the floor. I have a couple other things going on, which has caused me to be more progressive, but in the end I am not sorry I got the chair, because it was a help to hubs, emotionally. But I was sick quite awhile before I got it. I wanted to know it wasn't because I needed it as a crutch, but because I hurt myself or my hubs. This is a frustrating and complex illness, and most of us have to see several doctors before we find a good one and some of us never do get that lucky (me included). Much of this ends up being self learning and trial and error. it is never a bad idea to try different meds. Hopefully the doctors who have given your wife meds have started on teeny doses and titrated up very slowly. Many times, full doses are given and there are very few people here who tolerate adult doses of any meds. That may be part of the problem. You are a good husband to try and find answers to help. Hopefully your wife will come on at some point and maybe share what's going on from her perspective and we can add more input. morgan

I have poor motility, and strictures in my esophagus. When I'd finally lost 45 pounds or so, they finally started to believe me. The stricture is very high up, which is unusual, and the motility makes it worse. I am not a singer, by any stretch of the imagination, but I get hoarse too, probably because of reflux at night, which causes irritation and hoarseness. You can reflux food and bile all the way up into your larynx, and it can really burn it. I get my esophagus dilated every 8 weeks, or I am back on baby food and liquids. It feels like everything that goes in my mouth, stops part way down and then just sits there. I choke all the time. morgan

Jake is at a 9, and has the nasal, however, he takes it off every single night in his sleep, he never remembers doing it. I'm trying to get his rear in to get a mask, hoping it won't be as easy to slip off in his sleep. I'll have him ask for the quattro, he hates stuff on his face. (He wakes up to find it shut off, and neatly put away!) People with neuromuscular disorders usually do better with BiPap, because of muscle strength issues, not having the force to push the air out. morgan

Typically, doctors prefer you to be on the lowest effective dose of a med, so if you do so much better at .05, I wouldn't think he'd have a problem with you staying there. I'm glad you are feeling Better!!!! morgan

I've always been under the impression that squats are hard on the cardiovascular system. I couldn't do them for love or money, so I'm impressed, but I think anything you do that makes you feel a lot crummier, is probably not in your best interest to do. I just don't know, the last time I tried P.T., they fired me...twice, saying I wasn't in any shape for P.T. Har, how pathetic is that? But I remember as a kid when other kids did squats then stood up really fast and took several deep breaths and it MADE them faint. And these were healthy kids, so I am back where I started. I'd do the stuff that doesn't make me feel like death warmed over over and go as slowly as we do on meds...good luck sweetie! morgan

Some do, some just get a lot better, some stay the same, and some get worse. We do hear once in awhile from people who seem to have recovered and have let us know, but I have to tell you, if I was well, I wouldn't be here anymore, I'd be out doing all the stuff I've missed out on. I'd miss the wonderful people, but not the reason I met them. So it's hard to say. Just about everything about this disease is controversial, but I've been on here long enough to hear that people have gotten well enough to go back to essentially normal lives. morgan

Thanks for all the support everyone! It was very sweet. And helpful to know I'm not alone. Actually, Maggy, one of my completely housebroken dogs did pee on the bed the same night! Sympathetic enuresis, I guess. Aren't pets great... I have realized this is just another thing to deal with and I will. I have tried meds in the past, not for incontinence, but interstitial cystitis, and it was worse than the illness, which is typically the case for me. Pads are my new best friend, however, I believe this has made my sleep even worse, as I wake up even more easily. You know those dreams where you are naked in public? Well, I'm just a weeing along, but I wake up so quickly, it's like I've been shocked or something. I mean instant wide awake and they say that if you are in a deep sleep, which is when you expect this to happen, it's very difficult to wake up. It's just that "bladder isn't that full and no urge to go when it happens" thing. I have had residuals done in the past, when I subjected myself to the horror of urethral dilation, and I have never been a retainer. It sounds like I'm talking about an orthodontic problem now..... So now I have become a hypervigilant, refuse to pee the bed sleeper, which makes me even more exhausted. Oh what a world, what a world...but instead of melting from water being thrown on me, I'm smelling funny from urine escaping from me. Maybe I'll work on inventing Morgana's Secret, wetting the bed underoos.... won't be thongs I guess, but then I wouldn't wear those buggers anyhoo bad enough to wear gargantuan pads let alone having them stuck in the "middle" of your "cheeks" so to speak....... yeah, that's the ticket, I'll keep you all informed.... morgan