morgan617

I just remembered that the doctor said if I didn't need it by 2 am, they wouldn't use it....I thought that was odd, why is 2 am such a magical hour, but maybe that was it. I didn't get to sleep till after midnight. I only know this because my pacer interrogates itself at midnight, (I can feel it) and they won't tell you what time it is or let you have a clock in the room. morgan

I could not ever get my primary to order one, but my ENT didn't even hesitate. So I felt lucky. He was actually the one that brought it up and couldn't believe I'd never had one. Said he didn't care how my primary felt about him ordering it. So if your primary won't, you shouldn't hesitate to mention it to another doctor you have! The worst that can happen is they don't find anything, but you never know. morgan

Sending good thoughts your way sweetie! morgan

Hey Lois, mine was over night in a sleep lab. Get there at 8:45 pm and done at 6:30 am. They even let me shower to get the goop out of my hair! He said they don't do cpap unless absolutely neccessary. I think he was a bit confused though, thinking I was being tested because of obstructive apnea and actually it's for diaphram weakness due to PP. So he would have had to use Bi pap. I don't know if I could blow out cpap air. I didn't have any testing at home, or for narcolepsy, although he thought I might have it. I couldn't do the meds for it, so it just seemed like kind of a waste of time. I suppose it would have been validating, but if there's nothing I could do to help it, it seems a bit sensless. So, I'm kinda glad he decided not to try it! (The cpap, I digressed there for a moment) Yeah it's always a hurry up and wait thing isn't it? I think the doctor will stay on top of it, he was actually very nice. morgan

In the last year I have given up entirely on trying to feel better. My doctor doesn't return my calls, I haven't even seen him since last August. He refills my meds and that's it. I see my MDA doctor once a year now, and she has no clue about my disease either. I get dilated every eight weeks for esophageal "problems" he wouldn't write strictures, although last time he almost didn't get the darn thing down, it was so tight. So, then I realized I had let them off the hook. I mean, I was like them, or even worse, just content to continue to go downhill and die. While these guys stood by and just made believe I wasn't dying, just a bunch of conversion disorders. (I made Dave promise that my obit would say I died of complications of conversion disorders. He will absolutely do this.) So, I wrote my doctor a letter, gave him some info and told him to do whatever he wanted with it. I had done all I could, and had exhausted every means of trying to feel better. Now it's in his lap and his responsibility to do something, as I DESERVE to feel better, if there is a way I can. I told him I had given up, just like all my doctors had, and that put me at their level, and that was unacceptable to me. If I am going to die, it's not going to be because I didn't try, it will be because my doctors haven't. I felt so much better. Empowered, I guess. I told him to do nothing if he thinks I'm crazy and to make some effort if he doesn't. I don't care either way, because I know, that even if I do suffer from some mental health issues (and who wouldn't, under these circumstances) I am not making this up. When I'm gone, he will have to live with that. I will be gone, so it won't matter to me. But I will know I have done all I can. It was freeing. OH, I haven't heard from him.....LOL. But I still feel better....morgan

He will probably not like the idea of you taking Ambien, but don't get defensive about it. It will just go downhill if you do. The specialist I saw was very politically correct with me, and that was sort of weird, so I'm not sure what advice to give, except for the above. Good luck! morgan

The guy said I have sleep apnea, but it didn't warrant subjecting me to CPAP, although "the doctor may see it differently." He said I had some "abnormalities" but , of course, refused to discuss it. I have to wait two weeks for the results. He said he was surprised I fell asleep so easily...well DER, I am exhausted 24/7, that's the problem. I have a bunch of rashes from the electrodes and things, but the test was easy enough. He would not tell me what my sats dropped to. I'm sure this will be another wasted effort and money out of my pocket for nothing....sigh....morgan

I'm actually leaving for mine in a couple of hours. If they didn't put a CPAP or BIPAP machine on you during the study, my assumption is, it may be you would get improvement with it, but it's not severe enough to act immediately. They will put a machine on you during the study if you drop below or go above certain criterias. This should have been explained to you. My son has apnea, but they did not use CPAP on him, however he has it at home. His worst time is also with REM stage sleep. He has apnea and does not move at all. I too, am interested in my results, although I've never had results to anything, no matter how severe, that anyone wanted to address, so not even sure why I'm doing it....morgan p.s. the amount of sleep you actually got is used in figuring out the hypopneic index. It's titrated or whatever for that.

Congratulations!!!! morgan

Hi, welcome Grace. If you go to the home page, I think they have a list of doctors there. Most or all of them are in the mid eastern or total eastern parts of the country. There are a lot of people who have seen them, but it's typically a trip to one or more of them and then you find a good primary where you are that is open to helping you, whatever it takes. Good luck on that. You will find that it will probably be more of you teaching the doctor, than the doctor knowing what to do. So you need to find a good primary and give him/her lots of literature. Sometimes it is a very long process to find someone and get things going. It can be difficult to find a primary that is open to all kinds of stuff. So get ready to become a persevering and patient person. (No pun intended) There is lots of info here at the site, so it's a good place to start. Again, welcome! morgan

Hi Jacquie, welcome back. I am actually allergic to phenergen, but my son always gets it when he has gastros and stuff. It is a very old drug for nausea, which isn't a bad thing, but it is one of those anti nausea pills that can make you really sleepy. It comes in a suppository or pill or shot. It is very common in prescription cough medicines, like phenergen with codeine. If you've ever had a script cough medicine, you've probably taken it. Good luck sweetie and hope you feel better soon. morgan

Sweet pea, good luck with the appt, you have been having it way too rough for way too long. Will pray you get some answers! mamahencluckcluck

Wow, I guess if you are going to have a weird thing, have a massive weird thing....It does sound like something that could be the root of your problems though and even though the thought of this is so scary, you can certainly lead a totally productive life with one kidney. I think I'd give a kidney or just about anything to feel normal again, no matter how scary it seemed. But that's just me of course. I can see the gleam in the doctor's eye on how he plans on writing this one up for a journal! It's nice to know he's so "impressed" with you and may profit from your misery in more ways than one. We can only hope and pray that this is the cause of all your problems and you will have a full uneventful recovery with no lingering effects! morgan

Thank you Corina, I have been looking in the paper at jobs for my son, and I see all these nursing positions and think, oh I could do that, or ,that sounds so interesting! But realize it will never happen again. It still weighs very heavily on me, and I appreciate that you thought of that. I always wanted to be a hospice nurse, but they only had one small one here and never openings because people never left. Now they have two large ones and openings all the time. I realize I have lost so much of what I knew and of course the new stuff was never there to begin with. Phantom pains, like losing a leg, but still feeling the itch on my foot..... And so many people think I just don't want to work any more.....morgan

Dayna, I am so sorry! My suggestion is you get your doctor to get you in to see a registered dietician and see if you can control the blood sugars with diet alone. Many type 2 diabetics don't require meds, just have to watch their diet and if you able to lose the weight you gained (I gained 55 pounds in three months on an antidepressant many years ago) the dia betes will go away too. It is a misconception that everyone with diabetes will end up on insulin or pills. many people have actually come off insulin and meds with just proper diet instructions. My mother in law is a prime example. She was on insulin for years and then just decided to do the diet thing and now takes nothing. I know it feels overwhelming and hopeless, but it's not. Call your doctor and get a referral, take your shower, dry your tears and vent to the therapist. Then give your kids a kiss and tell them mommy was sad, but feels better now (lie if you have to, sometimes we can convince ourselves if we try hard enough, kids need to know that it's okay for a mom to have a bad day) and don't let anyone tell you no meds cause weight gain! I weighed 92 pounds when I started that med and had never had a weight problem in my life, good luck sweetie...morgan

I've had symptoms my whole life too. And have always heard that post viral has the best prognosis. There's some mutated gene in there somewhere they just haven't looked for or found in us lifers I think. As far as post viral, I think there must be a propensity for it and the virus or whatever triggered it, sets it off. morgan

I used to get these all the time until I managed to get on my atenolol and stay on it. If I stop it for any reason, they come back. I call them part of my "surges." But, as with anything, if it is new and bothersome, you need to get it checked out.....don't be put off by the are you anxious stuff. morgan

We all have the same type of irregular beats you did, even healthy people. He said it was normal, because normal amount of time for a person to have tachycardia in a 24 hour period is about an hour. Your 24 hours of beats averaged out to under 100, and even with the the few times you went above 100, it didn't stay there very long. For instance, on my first Holter study, my average was 120 and I was tachycardic for 8 hours, therefore mine was considered abnormal. R-R just means the longest period you went between heart beats. If a person has a heart rate of 60, their R-R interval will be 1 second. Yours was slightly longer, because your your heart rate went under 60 for a moment or however long it was. Suprventricular is above the ventricles, so that means pac's, which are typically quite harmless. They are beats that pop in early. I have them all day long some days, as do many others, as you probably do on some days. PVC's are also common, but may be more bothersome. Bigeminal means every other beat was a pvc. That is not usually a problem, pvc's become much more problematic when they run together at a very fast rate. You apparently didn't record anything during your pvc's and so they assume you were non symptomatic with them. So your test would be considered not worrisome to any doctor reading it. They do not take into consideration that we don't all tolerate everything, just because it's not normal to not tolerate stuff. That has been my biggest problem with doctors and their interpretations of tests. I got one that said I was having runs of pvc's and he recommended a sleep study to check for sleep apnea, but I was told it was completely normal. That was about 3-4 years ago and I am just getting my sleep study next week! I have a pace maker and told my cardio I was having some pretty symptomatic arrythmias I haven't had before and he said he would worry about them when my pacer recorded something. Well, my pacer is set to record v-tach at 180 or greater and only if sustained. I told him he would be figuring out what to do at my autopsy. Just because some people tolerate these rates, does not mean everyone does, and this is what these guys can't see. I, personally, find Holter studies to be of little value, unless you are a walking arrythmia. (I know I spell this word wrong, I hate the way it's really spelled) I am much more in favor of event monitors. I would have one Holter just to see a full 24 hours, but then go for event, because it gives you time to have the arrythmias and allows for those days that aren't so bad, not to rule how the doctor perceives your heart to be working. I have never had a Holter on a really bad day, and it's extremely frustrating. You are at the mercy of your body and it's not like you can say, okay heart, do your thing, and it will. Although doctors seem to think we can do this. An event monitor gives you that opportunity. Hope that helped. He read it and saw nothing to give him any red flags, regardless of how you FEEL, so he didn't mention it. morgan (Kristen, don't you just feel like some of these doctors DID spend a night at the Holiday Inn???LOL)

I got mine initially in 2003, have had one 6 question paper and then this, which was the full out, all the paper work and a visit to a psych person again. It was exactly like applying for the first time. I think they said every three years, then every 5. Mine this time said from time to time. Yeah, it is hard, even if you know how sick you are. I mean we always know how sick we are, but my son got denied due to age, not illness. They freely admitted he was physically disabled, but by THEIR standards, he was too young. Unless I poked both his eyes out with a fork I guess. So it wasn't even a question of whether he qualified, it was how old he was. Sophia, I ordered the paperwork for this decision, and all I got was my psych eval, and they sent that to my doctor. My doctor sent it to me. It was interesting to read though. It really does hit you in the face like a mackeral Maxine. I know how disabled I am, but to read it is sort of surreal. It does say what they approved me on though and POTS and OI weren't anywhere in the picture. Even though that's has done me in as far as being able to work. Any way, thanks all for your support! I know a lot of you are still struggling to get it, but just keep persevering. gladitsovermorgan

I really didn't think it would change, but you just never know. So am happy to report I got my letter today, in a fat envelope like Jake's, in which he was denied but it just had a please try and work pamphlet in it. If I could work, trust me, I wouldn't be scraping by on SSDI! Anyway, Jake has decided to try and work, and I have been renewed. They said my prognosis was fair and will only be checking on occasion in future. hmm. Good news though and thought I'd share. morgan

I think I've had 2 fevers in my entire life (knock on wood). I have broken all but one toe, had fractured ribs, and vertebrae, broken fingers, and a fractured ankle. I had shoulder surgery in 2001 and took one pain pill. I've also had 2 concussions. I just don't seem to feel pain like other people do. If I get a pain bad enough for the ER, then it's BAD. My friend didn't believe I had fractured my big toe, she said she broke her toe and couldn't walk right for months, but when we got the x ray, I actually had displaced bone. She believes me now. I know I am getting some neuropathy and that affects it too. I went to an ortho guy and told him my back hurt a little. I said i had a high tolerance for pain, and he said I was a big wuss! His words. Then he looked at my x ray and I have spurs and impingement on every single vertebra in my spine. He apologized. morgan

I forgot to tell you that many years ago I had an IVP, and the artery to my right kidney is in a weird position or something. I was told that at some point, it could impede the circulation and cause that kidney considerable damage. Not the the same problem, but the same result I guess. I was in my 30's and am now 53. No one will do kidney tests on me, but the last cat scan I had showed minor abnormalities. Lord only only knows what that means. Is this a major surgery, or something they can do with catheters and things. I mean, no big incision? They can do so many things with laprascopes now, we will hope that it can be done for this. I will keep you in my prayers and hope that it IS the cause of your problems...wouldn't it be nice to wake up cured??? Good luck sweetie! morgan

Jennifer, I saw a derm guy because the bottoms of my feet are like that. They burn, but are cold. he says the capillaries are abnormally dilated. It should make your hands feel hot, even if they are cold, because it's core blood rushing into them. It's called erythymea or something like that. Anyway, it's abnormal constriction and dilation of capillaries. I have no idea if that's your problem, but it sure sounds like my feet. But then, I've also been told it's neuropathy, and tada..conversion. So who knows....sorry I can't be more helpful. morgan

Well, not to make light of this, but if you can handle having a baby, you can handle anything!!!! Glad there was no damage to the kidney. And hope it all goes well! morgan

okay, pinkish/purplish, no moons, my toes, especially my big toes are usually just purple. I have raynaud's though, so they do the triple color thing at times. Is that what you are looking for? morgan