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An Introduction, And Some Questions


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I am new around these parts. It's been an interesting ride -- it got way too interesting the week between Christmas and New Year's... And I have questions that I could ask my doctor, but he doesn't have first hand experience (lucky guy).

Shortish version -- as a kid, I had some issues. About 14 years old, I definitely had some lovely migraines (temporal lobe epilepsy was also suspected, but it never seemed to pan out that way) and there was anecdotal evidence of a mitral valve prolapse. Over the years, it seemed I didn't have an MVP. A doctor would hear it, another wouldn't, and then I was told the classification changed for MVPs and they had to be... I don't know, blessed by some higher entity.

I had episodes between the ages of 14-28 that basically resulted in my being tested periodically for mono. I never had it. I think it's pretty rare I ever have had a blood test come back odd for anything -- and if one did, there was some way the doctors could say it was a fluke. I had the same doctor who heard the MVP originally say that he thought there was definitely some orthostatic intolerance going on (I was in my teens), as I would stand and frequently get light headed.

These are things that I learned to kind of roll with. They were a gigantic bother, but if I was slow rising, if I made sure I didn't get overheated, it tended to only be an issue when I had those really tired periods. It's funny, because I think everyone with stuff that's ongoing learns to sort of subconsciously find workarounds and not realize they're working around anything.

I left graduate school, and got my dream job in January 04, and into the summer months I did a really great job ignoring the stabbing pains in my head, behind my eyes, and in my lower legs (yowch, those killed). I figured that I was getting so tired because -- I always get tired. Maybe if I walked to work more I'd get more sunlight and I could shake it. Of course, I was getting dumb as a post (bad thing to do when you're working the reference desk -- hard to pass off your follow up reference interview question with a patron as a joke when you asked in all seriousness, "Remind me again, what state is Texas in?"). September came, I took my first vacation from work. Second day of vacation, I got in the shower, felt like I'd been smacked in the chest. I crawled out of the shower, took a nap, and I don't think I've woken up yet.

Six years later (five years after I was forced to quit my dream job because no doctor really believed anything was happening except me not wanting to go to work) things got really ugly. Late December, I got up, I exercised as I'd been doing because, y'know, they tell me it will solve my problems, and my sweet, long suffering husband and I go to the mall. I get really dizzy. We come home, and I just have to lay down. I notice my hands and feet are swelling up all weirdly, and they are red. I also can't wake up. I mean, even MORE. Next day I see my GP (who was not the one I started with six years prior) to show her my swelly hands. Nurse takes my blood pressure (low), and nurse notes pulse is high. Really high. (This isn't unusual. I lost a lot of weight in that past year -- 75 lbs -- and it'd been beating aggressively since the 50 lbs lost mark) Doctor comes in, has the proverbial kittens. Checks my oxygen sat, which was at 85%. She calls 9-1-1. I feel like the biggest idiot EVER. Paramedics ask when the heart trouble started -- Last June?

I get sent to the ER, where I am told I am "just anxious and I should try to calm down before I come to the ER." Right. I didn't call 9-1-1, guys. That was my physician.

So for the first three months of this year, I have many tests. I lose the ability to stand up (walking with cane currently), I have a right facial droop (mild). I have pain in my calves, and my neck (insert pain in the neck jokes here). My heart rate can be 65 bpm, it can be 135 bpm in the same hour. I often roll over in bed and have heart racing. I don't have chest pain or shortness of breath, but it's really uncomfortable and hard to breathe (there's a huge difference which I am sure you guys understand but doctors don't seem to). I sweat. I sweeeeaaaaat. At night I might have to change clothes, or the sheets if I'm not wearing any bedclothes, twice... I sweat during the day, just not so badly, and not generally in the usual areas (my armpits are fine. My stomach and chest, not so much). I turn blue. My feet and legs, mostly, but my hands will do it too. They also turn burning red (as opposed to the normal freezing cold) and my veins get very defined. I hurt for a half hour after I eat. It's 80 degrees F, I am wearing sweaters.

Anyway, because writing this bit has now taken two days (I am having a wicked time sitting upright for more than a half hour... SO bull)... Let me cut to right now... I ended up getting referred to a new GP by my former GP, who was going on maternity leave and had the good sense (and I totally respect and love her for this) to know that at this point, things were failing fast and I needed a new set of eyes who really had the connections (my old GP was not associated with a really big "in city" hospital) and love for mysterious sorts of things.

New GP is awesome. First visit he doesn't venture a guess, nothing, just looks and listens and prods. He hears my heart do weird things like premature beats (not caught on EKGs or a 24 hour holter -- just sinus tachycardia there). He noticed the facial droop (not me or my husband... we've been a bit distracted). He noticed and was really troubled by the sweating. He was even more troubled (and took it seriously!) when he learned that I basically can only struggle to doctor's visits (and even then. I can only have one appointment in a day. I am wiped if I try more). I am 36 years old, and except for the cane. look pretty healthy.

I started seeing him the beginning of May, and have seen him weekly. Last week, I was feeling particularly bad. My right leg in particular (my left does it too, but my right leg seriously has it in for me) was hurting, and I was noticing that it was harder to move and I had reduced sensation below the knee. So he whips off my shoes and says, "Your feet, they're blue." The week before that I had told him I found that generally. lying back at a 30 degree angle or so generally helped things. I didn't feel wonderful, but I felt better. So he tried it... And within 15 minutes of lying back I went from struggling to find words and get them out in the correct order (without slurring) to actually being able to carry on a somewhat normal conversation.

I haven't had a tilt table test, but he's fairly sure that there's some autonomic dysregulation going on. So we still don't know which one, or if it'll be one that is actually named or some weird mix of all of them... and I've had a lot of tests and imaging studies done, so we can safely rule out some underlying causes (like any rheumatological issues, brain tumors, diabetes, vitamin deficiencies). I have had such problems with fatigue I've been taking Ritalin and Concerta ER (under the watchful eye of my sleep doctor) and while they don't help the fatigue too much most of the time, they totally make my heart rate slow to a more normal and less emphatic beating pattern. It is so weird, and every doctor who blamed the tachycardia on the stimulants never believed me when I told them -- but I've read some stuff now, in my somewhat half-alert state, that this isn't unheard of with dysautonomias.

So I'm still in a state of waiting. But finally we've identified where the "broken bit" is, even if we haven't ironed out details. Of course, I'm finding that as we're closer to potentially getting me to a place where I could be feeling better we just can't get there fast enough.

I have some questions, though...

1) I know that retaining urine is a common symptom. I am not sure if this is what is going on with me... I've had a long history of microhematuria (blood not visible to the naked eye in my urine). It's mostly not a problem. I mean, I wouldn't know at all if it didn't happen on all these urine tests. But I find that sometimes I'll have to pee, not badly, but I'll go... And I go, and go and go. To the extent that I would have thought that I would have been much more uncomfortable. Or I'll go, and because I'm so out of it, I can't remember if I did or not. Or I'll go, and it'll finish up.... and then I realize if I sit just a bit and try to relax, or shift position a little, I can go just as much again. I've sort of always been like that -- so I don't know if it's unusual. I guess I thought of retention as being painful, and it isn't... I don't think I always empty entirely, and I don't think I realize it. If you have problems with urine retention, is it like that? (Sad how when you kinda feel one way for so long, you totally lose sight of what's normal and what isn't).

2) I use a wedge pillow when I sleep for my head (it helps me breathe better, and when I sit up to try to do other stuff, it makes my "sit up" time slightly more functional). Last night my calves were horrendously painful. Kept waking me up -- screaming (scaring the bejeebies out of my husband and dogs). Elevating my feet helped stop the screaming pain (still hurt, though). I am wondering if an adjustable bed would be worth the investment. Do any of you use one, and is there a real advantage over using wedge pillows? I can see some potential advantages, but the cost and admission there's something that wrong is still hard to wrap my head around. (On a good day, I always figure I can shove the pillows and cane in the closet and forget about it.)

3) I know treating/managing is dependent on a whole lot of variables -- I tend to be someone whose symptoms/severity changes in a relapsing remitting sort of way. They never completely leave, but I'll have periods that are better than others. I am really hopeful that even bad days treated will be somewhat akin to good days now... I mean, this has got to get better. I don't expect to be climbing Everest, but I sure would like to take a trip to the pharmacy or sit through a whole movie in a theater.... I know it's a vague sort of variable number, but once treatment/management got underway, how long was it until you started to notice that the moments of feeling better (if not wonderful) were coming more often or at least were better quality?

Thanks... Nice to meet you all. I just went on way too long (hooray for cut and paste to save posts when the gravity hit), but thanks for listening.


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Welcome to the Forum, Shoe,

Wow...That was a long intro, but interesting. I am unaware of the urinary issues, but some of the other problems you list I'm certainly familiar with...night sweats, utter fatigue, et'c. I think the first thing to do is to have a Tilt Table Test done, by someone who really understands our disease, so you can pinpoint what's going on in your individual case. The only way to get the best and most appropriate treatment is to figure out just what is going on with YOUR body. There are some experts listed here on the Dinet site, or many people can tell you good doctors to see if there aren't any in your area.

Use this Forum for help, guidance and support, as you'll find it in abundance here. You are not alone, and there are many who care. Best wishes and good luck!


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Thanks, Jana. I have this tendency to, um, write. I wish I had it to talk at doctor's visits, but I think I get so tired and befuddled my story comes out, "I don't feel good. Felt yucky for a long time. Fix, please?" :lol:

I think you make a good point. I live in Massachusetts (outside Boston), and I have to laugh because I'm always told that I'm lucky to live in an area with the greatest doctors in the world -- I also fortunately really do have great insurance (through my husband's work). Sadly, it hasn't always done me a whole lot of good. I am going to get the TTT, which again I am thinking is more to narrow down what mechanism is at work and probably they'll do what they need to to find any underlying stuff that could cause it. My new GP has a neurologist he thinks the world of that he's going to send me to (once he gives him the lowdown). I think once the tests are done, and some treatment and management plans are formulated, I might still seek out a second opinion at Vanderbilt. More because I've just sunk so much time into this and right now, I can't -- literally -- sit up for more than a half hour or forty five minutes, and I just want to make sure that this is finally freakin' taken care of the right way.

It is very nice to have at least the system that's affected named. That's kind of getting me through this past week. I think I've seen every specialist known to man -- (okay, no dermatologists, but that's about it) -- and neuros, rheumies, endocrine, vascular, cardio, psychiatrists, and pulmonologists all swore up and down it wasn't something that was within their specialty. I was beginning to wonder if I had some mystery organ system that no other human on earth had that was busted. And boy, the implications I'd get that I was the only person -- ever -- who walked into a doctor's office and didn't present in a textbook manner were frustrating. I was SO relieved when my new guy came out mid office visit and said, "By the way, you aren't crazy. I mean, what the medical profession has put you through might make you feel that way... but what's happening makes sense when I see the areas you're having problems, it's just that everything is breaking all together and with no apparent reason that's odd."

Sounds like the next challenge will be getting the most fitting diagnosis and working through treatment options.

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I love to write, also. Are you a list-maker? I'm a perfectionist/OCD (a little) and I live by my lists. I always write out my questions for any big doctor visit starting a couple of days before my visit. Just a suggestion...Vanderbilt is a terrific place to go.

Are you still working?

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Everyone freaks out, I have a master's in library science -- and I am seriously the most disorganized person ever. I tend to balk at lists -- but in the same way, I kinda need a general plan. That way, I have a direction, but if something flubs it up, I find it easier to re-plan things.

Not working... Well... I haven't been able to work outside the house in about five years. That killed me. I loved my job. I've been freelance writing (blogging) about open source/free software for the past year and a half. It was going really well, then January hits and rattled things a bit. I haven't been able to do much in that way for about two weeks, but the guys I write for have been good about it. I am hoping that I at least get a longer window than a half hour at a shot soon that my mind stays clear so I can get back into it. I try every day because it's one thing that makes me feel normal, but it isn't so good to be posting stuff with the middle third of every fourth sentence missing or in the wrong order.

I find the brain fog, fatigue, and ten second delay I seem to always be operating under a lot harder to deal with than the pain and racing heart/bp weirdness. Totally hate when my brain doesn't cooperate.

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Hi Shoe,

Welcome, although I am sorry for what you've been through that brought you here. Gosh I thought you were writing my story. Just kidding. But seriously All the trouble with doctors, and when you said your oxygen was low, and they sent you to the ER. That has happened to me many times. I am so glad that you found a physician that knew something about autonomic problems. I sure hope you get answers soon. I have problems with bladder also, but mine come in the form of don't know I have to go, then cough or sneeze, then I find out....oops I had to go. I know on this site you will find many people who share many of the same problems. By the way did they figure out why your oxygen was so low? Mine has ran as low as 90, but I know that isn't a good oxygen. I really get your brain fog issues. You can probably tell by how confused this post is I am suffering from it now! Anyways I just wanted to say welcome.


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Thanks for the welcome!

They still can't figure out why my oxygen sat does that... it definitely is lots worse with exertion (of course, exertion was me walking down the hall with the probe stuck to my forehead....) The readings tend to be higher on my forehead (90-97 with exertion) than on my finger (75-85 with exertion) because I have really incredibly cold hands (except for the times they turn bright red and feel like flames ought to shoot out of them... So either way, I go to hug my husband and he braces for the extreme). I think the readings were a lot lower than they should have been because of the cold fingers, but even still, they were low otherwise with no apparent reason. My pulmonary function tests were fine -- but I kept telling the pulmonologist that I felt like I could have easily burst into song if I could only move my chest. I have a small PFO (hole) in my heart, but they say that's not unusual either. The oxygen desaturation is like a lot of stuff with me, very much comes and goes.

Actually, your comment about the bladder issues is pretty interesting. I don't necessarily have any surprises with sneezes or laughing, but it's interesting that you said you don't feel like you've got to go... Cause I totally relate to that. I will have days that I'll be like, well, hey, I'm about to go down for the count in bed, so let me take a quick bathroom break so I don't have to try to get up if I really can't in five minutes or so... I don't feel like I really have to go, and I'll sit, and I'll be a bit taken back about the fact that I spend five minutes just going... because I didn't feel like I even had to. I guess there must be a sensor problem in the area? (Yeah, okay, I'm a computer geek.)

I really respect my GP prior to this one... I know that lots of specialists were telling her I was just off my rocker. And I know she believed that I wasn't, even though I know she had no clue as to what was going on or why she really should believe me, and I scared her to death with this stuff (she was convinced I was dying in her office on a couple of occasions), I appreciate that she was more than willing to admit that, and that she didn't know, and that she didn't want me to suffer or die because she was unable to put it together or get me in the right hands. She referred me to this GP, who is most definitely the right hands. I really like that he just didn't jump to any conclusions the first time I saw him, and even though he heard weird stuff with my heart beat, when it didn't show on the EKG he still noted that he heard it. He is one of the few I've seen who didn't change what he saw in front of him to match what came back on the lab reports.

I have found I deal pretty well with doctors who can admit they don't know something, or need time to think, or even make a mistake in a good faith effort to get to the bottom of things. I've had waaaay too many tell me to "be patient" and it's clearly a code for "go home and when you feel bad again, hopefully I won't be on call." I think it might be the librarian training, actually. "I don't know" is a perfectly acceptable answer, as long as it's said while looking up the next most appropriate tests to order and things to look at.

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Hi, 2 things come to my mind

Dysreflexia "Autonomic dysreflexia means an over-activity of the Autonomic Nervous System. It can occur when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder. The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the sympathetic portion of autonomic nervous system. This results in spasms and a narrowing of the blood vessels, which causes a rise in the blood pressure. Nerve receptors in the heart and blood vessels detect this rise in blood pressure and send a message to the brain. The brain sends a message to the heart, causing the heartbeat to slow down and the blood vessels above the level of injury to dilate. However, the brain cannot send messages below the level of injury, due to the spinal cord lesion, and therefore the blood pressure cannot be regulated. "

Neurogenic Bladder "An underactive neurogenic bladder has a capacity that is extremely large (up to 2000 ml). Due to a loss of the sensation of bladder filling, the bladder does not contract forcefully, and small amounts of urine dribble from the urethra as the bladder pressure reaches a breakthrough point."

I will put just a little bit "up", as I understand your PC time is difficult.

It would be doubtful , I think but do you see that the overfull bladder can trigger autonomic problems? Have you any spine injuries?

good luck..............

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Hi Pat,

My lumbar spine (which I believe is below the bladder level) has some disk degeneration, and past mild herniations, but nothing ever impinged on the cord. I just had a thoracic spine MRI, because of an EMG that showed chest nerves and muscles that fire inappropriately, but the MRI there was completely normal as well (no herniations, no tumors, no signs of demyelination). Had a cervical spine MRI a few years back, also clear (but didn't get one when they did my thoracic and brain in March. Go figure). It doesn't seem likely there is a spinal injury, but then, I have the unexplained abnormal EMG (which that neuro promptly said, "Well, it wouldn't explain anything you are experiencing anyway..." Okay, so, why'd you order it and then a follow up MRI?).

Interesting though... It does seem to be filled more than I would expect for how it feels, and fortunately no leakage problems.... I guessed I figured that retention ought to... hurt. Like, I've got to go, but I can't. (Or like urinary tract infections that make you feel like you've got to go...) But it doesn't. Hmmm.

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I like writing too - infact its what I do for a living...

I know treating/managing is dependent on a whole lot of variables -- I tend to be someone whose symptoms/severity changes in a relapsing remitting sort of way. They never completely leave, but I'll have periods that are better than others. I am really hopeful that even bad days treated will be somewhat akin to good days now... I mean, this has got to get better. I don't expect to be climbing Everest, but I sure would like to take a trip to the pharmacy or sit through a whole movie in a theater.... I know it's a vague sort of variable number, but once treatment/management got underway, how long was it until you started to notice that the moments of feeling better (if not wonderful) were coming more often or at least were better quality?

My presentation is pretty similar - wax and waning - I get relapses of all bad days, then i get a few good days in the bad and then a gradually the better days are more and the bad days are less until i only get very occasional bad days or none at all for a while and then it ebbs and flows. My relapses have all been so far recipitated by long distance flying (good holidays but its taken between 3-9 months to get over the relapses as a consequence).

If you are like me and this and your exercise thing suggest you might be then from my experience hopefully things will inprove for you,

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Ooo. I'd love to be able to travel one day -- I don't know how much the fun of the trip takes the sting out of the "oh crud" afterwards, but I guess that's something, and a recognizable (and pretty logical) trigger. Bet altitude changes and long periods of sitting are killer. Definitely life stressors can get me started, I've noticed. Well, I think I got worse with the weight loss (oh, the irony!) but December was a rough month (lost one of our dogs we had for 14 years) and then holidays, and it just caught up with me. I had three months of pure evil, and the end of March resolved back to a higher level of cruddiness than I had previously (I had been fairly stable for a year or two before that -- not wonderful, again, but better than now). My dad had a heart attack and quadruple bypass in April (he did great, though, and is doing better than I am right now, heh!) but mid-May it came back hard. It's been less aggressively headed downhill, and some days are better than others (today isn't too bad). But definitely a "come and go" sort of deal.

I am glad that exercise doesn't make it noticeably worse. I guess I end up thinking that I can't do a whole lot that's terribly productive in twenty minutes, so it probably is better to use it being active than just sitting passively, since if it's gonna catch up with me, it'll do it either way. :unsure:

But definitely sounds very much like the way I get hit as it comes and go.... I am hoping that my slightly higher endurance level today (after the horror of the last three) is a sign that maybe I'm rounding the bend again.

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Welcome shoe,

You have a lot of stuff going on. 02 sats of 85% are certainly not normal and the fact that you have to sleep on a wedge to breathe is disconcerting. I am assuming you've had an echocardiogram to decide if you do, in fact, have MVP. There are people who can have intermittant (sp, sorry) prolapse, but they should be able to see something on an echo. Mvp can cause tachycardia and if no one is sure, an echo is certainly an easy way to find out once and for all.

My lower legs and hands also turn purple when left dangling for any reason, they also get cold and dead white, then suffuse with blood and turn beet red and burn like fire. Either neuropathy or erythemaglia (again with the spelling) Did you lose the weight on purpose?

I have problems with voiding and have had hematuria for over 25 years, no cause ever found, a bit of interstitial cystitis which comes and goes, but always the blood. But nothing major. It can be an indication of renal disease however, so hopefully they have checked that out. I tend to go very tiny amounts, unless I paralyze (a whole other illness I won't go into here) and will have spasms and squirt after voiding, as opposed to stress incontinence. I feel like I constantly have to go. If you are voiding a lot more than you are taking in, it will leave you dry and tachy, as dehydration does. People with OI problems tend to have lower than normal blood volumes, regardless of how much they drink or take in, so if you have that plus are voiding more than drinking, it can wreak havoc on your system.

I have no idea about your leg pains. mine are like that, but also due to the other illness and realted to potassium levels. Potassium relieves the pain. Potassium should never be taken unless under a doctor's supervision however. Those over the counter supplements are pretty scary to me for that reason.

I hope you get some answers soon. People with autonomic dysfunction can have many varied symptoms, so it's a hard one to sort out and sometimes doctors get stuck on one thing, or on nothing (as in, it's all in your head) so just keep chipping away. This site has many resources and you can now google a lot of stuff too. Good luck in your search for answers! morgan

I don't believe you commented on your BP, or maybe I have forgotten, but it seems you only talked about your pulse. Not a good day for me, obviously.

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Thanks! I have had every usual suspect test (thyroid, ANA, RFs, electrolytes and renal hoohahs) I think at least every six months for the last six years. I have had lots of not so usuals (tests for Wegener's granulamatosis, every rheumatological workup ever, single fiber EMG -- 45 minutes of a needle in my eye socket). The only things that are ever consistently wrong are my Vitamin D, the microhematuria, and the sleep studies (though no one is clear why I wake up -- not breathing issues, not leg movements...) I've had many EKGs, echos, holters, and even had the transesophageal echo... they found a small PFO (hole in the heart, congenital, not being problematic) and while they thought they heard an MVP way back when I was a teen, nothing was amiss. The new doc has felt some premature beats, but nothing, again, on the tests. In the off chance I had -- well, you know, I don't know what they thought -- I even had the fun of a endoscope strung into my bladder to watch my kidneys do their thing (it was so unpleasant, but luckily, my urologist was really cool). MRIs and MRAs of head and spine all normal, with one EMG/Nerve conduction showing firing happening in my chest muscles (no one knows why).

Weight loss... well, the first 70 lbs... not necessarily planned but not unexplainable. It was consistent with an increase in exercise and diet (and med) change. The last 15 lbs., much more worrisome because I was unable to exercise, I was eating, and I was taking prednisone, which, um, isn't known for its properties of having one maintain their current weight (never mind lose it). It still goes and dips inexplicably when I feel cruddy and can't do anything, but for the most part, it then comes back when I feel a little bit better.

My blue hands/feet come with any exertion -- less with steady exercise, more with stop and go stuff -- so when if I am cleaning, or getting dressed, I can turn all sorts of lovely colors. The fire/burn/flushing (my face flushes -- has for years, mostly in the afternoon) seems to come randomly, later in the day, with no real reason.

Blood pressure has been historically low, except when it spikes (heh.) 100/60 is not unusual, but I've had it come in at 140/95 the next week's visit. Usually on the low end, though. I have had it taken lying down and standing (and I've had it taken while sitting where the doctor has come in and said, "Are you able to stand?")

It's been rough because especially since January, it's been very visible, but no tests have explained at all why. It's just frustrating when a doctor sees it (the pulmonologist was a great one for this) and when the test doesn't show anything, it seems suddenly I have the power to make my oxsat drop and turn blue. What do they do in med school? :lol:


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Welcome Shoe,

Sounds like you have been through the medical run-around. I hope you get some good answers soon to your interesting symptoms.

You're posts are very enjoyable to read. You have quite a wonderful way with words.

Sorry you're here, but glad you found us!


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