comfortzone

Can you handle yet another person's story lol? Anyway welcome and yes these folks here are an amazing wealth of compassion, intelligence, and real lived out life experience that they share for the benefit of others ... I 'heart' dinet forum! I'm seeing that the 'gray zone' in all of the dysautonomic stuff is pretty consistent here.... Not perhaps so much in the cut and dried diagnosis criteria and it's application to people suffering - but in the lived out experience of each individual. Symptoms can wax and wane - come on full force ... or fade for a bit. Your 'window' of testing time can only be loaded with so much hope LOL....your body will do what it does regardless of what it did yesterday or what it may do tomorrow. So on we go seeking answers, applying knowledge, learning from others etc. My coming here to Dinet was for increased sweating, tachy heart rate to 140 with no explanation in standing up, blood pressures varying widely, inability to carry on a normal day without rest in the day - completely turning my world upside down kind of thing. Leg weakness, body pains, crud a bunch of stuff. It is now thought I have a very complicated set of symptoms that all interplay with each other...(well that part I knew haha!) - but the autonomic doctor (Dr. B.P. Goodman, Mayo) amazingly teased out just about each and every factor in a two week work up. Here my body 'behaved' in the short triplet of autonomic testing....out of the blue -- after a round of beta blocker trials by my home primary doc - the heart rate 'cured'? itself. Even without being on them for a week before the testing. Yet because of four joint replacements, hypermobility syndrome, post op neuro issues he identified, and a newly found small fiber neuropathy.....everything started to make sense. Impaired glucose issues, hypertension, sfn - and sleep apnea now...explained yet more. The laying and standing catecholamine test I flunked....yet how that impacts things -- it's pretty messy. Perhaps a messed up fight or flight system with increased hyper adrenergic state... In the end my treatment is probably a lot like someone who got a POTS diagnosis (or a variant thereof)....I am to exercise forever till I die (only because I can while my joints last - I do understand many POTS patients are severely limited in this ability), I am to attain a normal weight, I am to wear compression stockings while on my feet, I am to stay super-hydrated with G2 or water. With having been a nurse I'm trusted to titrate my new ordered b/p med regimen as works - but will call the doc if it's getting yet more widely labile - (which happens due to venous pooling d/t sfn) - my b/p is purported to possibly get even trickier to manage with the weight loss. My muscular deficits are likely permanent damage from joint replacement surgeries. My baseline of hypertension - confounds things because the normal meds given to raise the b/p cannot of course be given - it's so crazy complicated to me -- but I'm new to all this. And wearing CPAP -- which will be the hugest motivator in the world to attain a normal weight in hopes of curing my mild apnea...I'm claustrophobic. I would have never been able to appreciate the gifts and talents of my autonomic neuro physician or even heard of him for that matter if it weren't for the sharing of the people here. Upon reading the recommendations I made a lot of things happen in order to see him because I knew these superb clinicians that actually have a great interest in humanity with these sorts of maladies are few and far between. Now I can claim my sanity......... Now I can smile for a bit at the cocky neuro seen elsewhere that said to get counseling because 'it's been known to help fatigue' - and smile even broader for the next even cockier neuro who said I had to prove I wasn't psychiatrically challenged because of what the first guy wrote... Good grief. I'm in utter awe of the goodness that's surrounded me since I met the people here on dinet.... May blessings unfold and manifest for you as well!!!

Truly I have never ever gave thought to what I've eaten as it relates to my symptoms. Yet time and time again here I've read with interest how many of you through suggestion or trial and error or doctors orders have modified what types and kinds of foods you eat, beverages you drink etc. Not going into supplements on this thread - but strictly food-wise......what foods have shown to be the root of many of your hardest signs/symptoms? If not perhaps at the root of them - which foods seem to exacerbate your symptoms? I don't know if it's my cloudy brain or my poor habits or my overwhelmdness that has me not scrutinizing this issue in my own life..... But it's the last thing -- on my list to study perhaps. I guess it would be good to read about what the elimination of.... Or the addition of.....did for you on the positive side. Thanks as always!

You are a very strong person - having endured all that and you are still on the path of motivation and function....good for you! I suppose as far as developing a thicker skin - my guess is that it takes patience and practice. You have to choose to not let the comments or remarks and the outcomes dictate how you are going to feel and behave. Maybe you could practice the scenarios over in your mind ahead of time.... Like do a mental script where the person actually does shun you and give you grief - to which you visualize yourself continuing to be the strong gracious person you are - who has compassion for the one behaving miserably toward you. You understand it is her or his issue - that they are dealing with things in the way that is unique to them ... but you don't buy into their baggage, their rules and their ideas. You then visualize yourself remaining calm and focused and determined.... Set yourself some goals. Work bit by bit toward achieving smaller goals first and build on those successes. Remember the only time we fail is if we quit trying..... to reach our dreams and desires. Most often the only one stopping us from acquiring what we want out of life -- oddly is ourselves. We take our eyes off the prize and give into licking our wounds, blaming, becoming bitter, resentful or unforgiving. However all of this can change. We can choose to be kind to ourselves first and foremost by caring for our health. In all aspects - physical, mental, spiritual, emotional. We can practice confidence & self respect & love. When you work with others that aren't bending things to your way of seeing them - and they aren't doing things as you wish --- it's time to re-evaluate. Maybe another approach would work better, maybe there's a bigger picture, maybe your gifts and talents are best utilized elsewhere. We all have amazing gifts - and a drive to use them to help others deep within....uncovering what we can do -- with special needs - isn't an easy task ... but with perseverance you will find your nitch. You impact people all the day long in important ways that help them.....keep up the good work and stay strong as you are.

Reen - Hug! I know it is sooo frustrating when the docs sort of wish to turf you to this one and then that one - I had a neuro tell me I DID have dysautonomia based on my blood pressures and holter monitor and symptoms but decided that because it was not caused my MS and some of her specialty cases that it was nothing she would touch. Another neuro told me my fatigue was all in my head. Thankfully Mayo validated me - commiserates with me and tells me to 'try not to get discouraged, don't give into it'.... That was pretty cool to hear - yet it really doesn't give me much to work with in terms of how to handle things. But really I guess I can look at it like I have to diet and exercise now for life - with this pre-diabetes, hypermobility syndrome, sleep apnea, labile b/p - so that in and of itself is a full time job. Exercising causes pain and symptoms that are unpleasant - yet in the end - this just may be my life. Now that the joint replacements are all 4 over and done with - I have to lose the weight that having wicked arthritis lead me to gain. I was so immobile for so long. Need to get trim before thinking about revisions. Heck the hips are already 5 years old, the knees are two now. It's hard to have courage for all everyone faces here - but supporting each other and sharing what we learn is a great way to connect and gain strength! I'll definitely post if I learn anything soon...I'm sorry they are running you in circles ... that stinks big time!

Thank you Dianne - so much. You and the others here are so intelligent - I'm happy to have met you all. Yes when I told my doctor how lousy I felt with exercise -- she asked what I was doing. I told her 1 1/2 hours of physical therapy 2 to 3 times a week and walking about an hour to two hours everyday. Her eyes about popped out of her head! She told me that eating properly is most of weight loss - not exercise. She told me to knock it off - that some 'bodies' aren't meant to do that and she believes I'm one of them. But honestly it wasn't until I really pushed like that that the weight started to come off - and as I have so much to lose - I was determined to do this - even if it meant upping pain meds and doing just as you say - collapsing after and being generally useless. My house got utterly unliveable for awhile because even simple housework was too much. I work for 4 hours on my feet as well 3 or so days a week - the blood pressure plummets after and I have to lay down to bring it up -- yet I might not have dysautonomia? I'm so confused! I hope I get to see my doctor one last time to discuss this issue and ask if I need to get follow up with cardiology on that one. So there's that question -- and also the crazy blood sugar questions as it relates to energy stores and activities of daily living. Well I'm in my last couple of days at the Mayo Clinic - I almost have more questions now than when I came.... & probably so do the doctors LOL.... I'll read and reread everyone's posts --- and try to digest it all (good thing I lost weight before I came here - out of my element and routine I've surely gained 5 pounds back :-( ) But tomorrow's a new day & again thanks everyone for sharing about blood sugar issues ~

Hi - and I'm so sorry about your severe pain! I just now read this. I am glad you will be seeing specialists about this. I have chronic pain and probably should look into supplements as mentioned here - like the ginger and tumeric ... yet I sometimes worry about how it messes with my other meds for blood pressure etc... I use prescription short acting pain medications - ever since my bilat knee replacements the end of 2008. I despise taking them for the side effects, my own thoughts on the stigma of it, the cost to your liver etc, the cost period -- and quite frankly they don't even work that well anymore. The doctor was pushing for long acting medications such as Methadone - yet I don't feel like I'm willing to be tied to a pain management doctor for the rest of my life on something as potent as that with even more stigma attached to it. Yet he says it's less damaging to the body and helpful at low doses once a day at bedtime. I'm so vary wary about this - so I just keep taking the other medication. I'm sincerely hoping, and I'll say a prayer for you too, that what you have is very very temporary -- and that the right mix of good doctor, good advice through answers achieved by the docs and your support here will have that pain in your chest area gone, gone gone!

nmorgen, Reen, Dianne, Issie -- Thank you all for your invaluable insights and ponderings - hugs to each of you. I do feel validated and more energy when you share your stories as well - and between us - I bet we'll figure it out some way, some day, some how - and if not ... well you can't say we aren't trying! Is it endocrinology that investigates any genetic metabolic issues? I guess I feel that if a sugar issue is told to be the likely suspect for confirmed SFN - that perhaps more specific testing than a 2 hour glucose tolerance test might be order -- or is that overkill? I've never had an insulin level checked before.... My experienced 'type' if you will of exercise intolerance is one of doing fairly well for about half the day - and then being compelled to lie down for awhile to equilibrate. I thought this was dysautonomia and labile blood pressure related - but perhaps it is not. I have just a couple of test results to come back yet before I got home. If someone told me to just 'deal with it' I would happily oblige them - but what I have is disabling. That is why I went to Mayo. I need (desire) to get back working in my career - instead I am cooking for short hours in a restaurant ... as all I can handle is short hours. I'll ask if there is a blood panel that further delineates the origin and type of elevated HBA1C levels, insulin levels, and any other likely metabolic issues. If anyone knows the names of specific labs that might reveal answers I'll ask the Mayo doc for those and my reasoning....so far they have been on board with all my suggestions - they have been so good to me!

Hi ~ It sounds like you are having a lot of heart palpitations.... Off and on in life those can come on very frequently -- then you forget about them cause they just seems to quiet down. Stress etc. can increase them, medications, hydration status, your overall general health and nutrition status - my guess is that the reasons are myriad and changing - but as the others have said they are most always either normal or treatable. When I was having a lot - I also had a tachy baseline as well...my cardiologist ordered a 24 hour holter monitor that showed the palpitations as isolated PVC's (one type of ectopic beat) - and some short runs of PAT (paroxysmal atrial tachycardia) and some PAC's as well. Nothing to treat really - but just confirms 'yep you are having heart palpitations' I would think the only way to check them out would be on a 24 hour holter monitor - but even so - frustratingly it can come up negative if you suddenly have a 'good day' in there ... Yet if you are being bothered daily with them - I bet it would show what you are experiencing. The sensations of these will feel just like you mention - thuds, pauses, etc. But the heart is smart and if you have a run of odd beats - it will have compensatory pauses perhaps after a beat before it initiates the normal one again I'd venture. I'm not sure but did your signature line of diagnosis say you had SVT? If that is the case then I'd get with your cardiologist and tell them you are experiencing rhythm disturbances - tell them what it feels like - and let them figure out if you have 'ectopic beats' or runs of ectopy -- like bouts with SVT ... or something else.... It's too hard to figure it all out yourself and drains you of energy. Good luck to you!

I need help looking at the big picture from your perspective :-) Per my usual - my extensive tests in my dysautonomia - don't make a whole lot of sense to me or anyone else for that matter. There are too many to go into - so I'll start with just one... Okay if anyone here has small fiber neuropathy -- did you get diagnosed when you already had a diagnosis of diabetes or pre-diabetes? Or did you have feet symptoms that prompted the testing? Did anyone follow up with blood glucose monitoring? My situation is one of I have the symptoms of worsening small fiber neuropathy .... & testing confirmed this. But as to why? Well my hemoglobin a1c has been about 6 for I'm guessing 4 years. Since it never changed - even with a trial with Metformin a few years back - we stopped that medication. All medications come with a price - so doc said stop taking it. Then very recently - I get a fasting blood glucose of about 118. This is the range it's been in for about 4-5 years. The unusual part was in that I had a 2 hour glucose tolerance test - with odd results. It showed me at like 118 fasting and 119 after 2 hours post drinking the test solution. So that shows that my insulin levels are handling things well? Or no? I had believed that if the 2 hour was over 140 you have diabetes or issues that way. Yet whatever I have it's enough to give me significant pains in bilat feet and up into the ankles over the last year or so. I've lost 35 pounds in the last 4 mos. - but that's just a third of what I need to lose -- so I'll keep that up. But might there be some kind of odd metabolic issue -- that can also cause weird labile HTN, muscle join pains, knee buckling, and a some other things? Is there any testing that you are aware of that you've had done that ilicited some more concrete results that pointed do a concrete diagnosis that in turn gave you a plan for better health? I'm stumped....I somehow think I stump everyone - even the great docs -- and they all feel so bad they can't help me..... This is quite a bit of stress - just dealing with being the odd man out with no specific helps! Thanks you guys! To date I've seen rheumie, neuro, phys.med&rehab, nephrology, sleep pulmonogy, all at Mayo.... I get 'yes your hip muscles are weak, no we don't know why. yes you have sfn - but we're not positive what's causing it - maybe your sugars, yes your knee buckles - thank goodness you've built up your muscles so you won't likely fall - but we don't know why, yes your emg shows chronic s1 radiculopathy but 2 mri's of the spine area ilicit no major problems, you have mild sleep apnea with severe desats to the low 70's, your blood sugar testing is confusing, yes your blood pressure is very labile but we don't know why or really what to tell you to do about it aside from rearranging your current meds a bit, your arms hurt because your legs are weak and you push yourself out of furniture - please don't do that ok? HUH? the next guy 'your legs are strong'....yet I can't get out of chairs and such without upper body work and handicap concessions in the home.... I'm trying to keep positive but today ... I'm feeling sad.

I wish I could be more help - and I feel your strong desire to 'right' things.... I am not clear if you are doing this with or without the help of a physician... If the doctor clearly understands a need for decreasing or eliminating a drug or radically changing a drug schedule as it relates to benzos sometimes you can be admitted to the hospital where they will do an intesive care kind of thing -- and provide you with support as you withdraw --- it may be something to look into. If you are staying away from doctors in all of this for a good reason I have know idea of what that might be.... But I do wish you well & hope you meet your goals in a safe way - probably best a doctor monitored way.... They are there to help you (or so they should be) I can't comment on how you are to achieve your goals -- but I do wish the best to you sincerely!

I LOVE it! 'It's not that I had to lie down and rest....it's that I couldn't stand any longer' -- That hits the nail on the head for sure! Thank you so much!

Hi... I just had a sleep study last night and found out that I desat to 70% -- Anything less than 85% is not good. So I was just wondering - they said I have mild obstructive sleep apnea with the desats - I woke up with a headache and feeling kinda miserable - in spite of the fact that I slept from about 11pm to 6am or so -- I NEVER sleep that long. Anyway it was long enough for 4 rems and as many bad breathing areas on the study. So I wondered if hypoxemia from this could cause you to feel lousy.... I have a second study tomorrow night so I'll ask a ton of questions - cuz I wonder as we have no idea what happens when we sleep - if people with dysautonomia have sleep disorders or suffer with them some how 'harder'? If that makes any sense lol....

Thanks ..... Had a nice tearful moment again today - in front of the doc. He tell's me to keep a positive attitude. He's such a joy that guy - so intelligent and kind! I had another wearying day of that serumm cathecholamine test - this time lying and standing. I had the sleep consult that showed mild obstructive sleep apnea with desats to the 70's. I have to have a second study done tomorrow night. I have very labile blood pressure per the study for 24 hours - yet don't know why (or what to do about it). I had an abdominal CT scan with contrast for highlighting the kidneys to check that out as a source. I have small fiber neuropathy per the skin biopsy only and my doctors eval. I have pre-diabetes. My bazillion labs and 2 MRI's show nothing conclusive. My TTT and the little trio of autonomic stuff didn't look abnormal - it was the neuro one - not the cardiac one. So maybe all these little things are what's causing my misery - dunno. In the meantime I still have bilat leg pain - my right knee buckles - stabbing leg pains, burning feet pains, headaches, morning stiffness is extreme for TWO years now! Came on just in between the two knee replacements. My guess might be: Joint pains of limbs from hypermobility syndrome. Headaches from bp and hypoxemia r/t sleep issues. High blood sugars from overweight and sleep issues. Small fiber neuropathy from the borderline diabetes, leg issues of weakness with getting out of chairs etc.. from nerve damage from surgeries, & have no idea if I have a hyper adrenergic state or not as the catecholamines aren't back yet ... with standing. Labile blood pressures with no known cause for sure - but at least it's documented Another consult is due for PM&R - or physical medicine and rehab to see about why my function in my legs is so weird & what to do about it - EMG's showing chronic S1 radiculopathy... Anyway next week is my third week of testing and I'm getting sooooooooo tired. Tomorrow I have to wait standby for the PM&R ... I pray I get in so I can go home next Wednesday as planned. Need to find an apartment this weekend....I've decided I wasted 2 years of my life looking for answers and some physician to be able to think outside the box in my remote agricultural area....& came up dry. I go to AZ and in 2 weeks I get everything I need............ I cannot risk having this kind of health & being in the boonies any more.... So Arizona here I come. It's sudden and abrupt - but the sooner I get here the better. I need the confidence of Mayo on my side, the sunshine, the lively lifestyle, the stark desert, the amazing people..... I am so grateful to have made this trip....

Do be careful ~ withdrawing from Benzos too rapidly can cause many undesirable things such as panic attacks, psychosis or siezures.... So GO slowly....very slowly.... Dr. Laura Ashton has more than one utube video on this topic.... If you listen to one - listen to ALL of them (they are very short) -- there's some good info there (but it's spread btw the videos). Also Dr. Peter Breggin's books on 'your drug might be your problem' etc. (THE guru on trying to help people without psychiatric medications) used to have a schedule for taper somewhere in the book & on his website I thought - though I couldn't find it just now. Anyway the thing with Klonopin is that it is a LONG acting benzo -- so a person can quit taking it -- and think they are doing absolutely fine with no withdrawl symptoms for up to 11 days to 2 weeks and THEN get severe symptoms. Because it lasts so long in the body.... Dr. Ashton has good common sense too - like using extreme slowness to withdraw because 'what's the hurry?' Sometimes it takes months to a year to have a comfortable withdrawl.... Leading to 1/4 tabs and tiny amounts like that over weeks and weeks. BUT every person is individual and their needs and reasons for the medication are individual -- so it's best for the patient to work with their doctor together for what works best for them..... But slow is the way to go from my limited perspective --- not going slowly is asking for trouble and discomfort.... Best Wishes for you to meet your goals!

Yes keeping up with something daily does take a bit of initiative and doing it even when you find a zillion truly legitimate reasons not too! I have that issue here - I'm in Arizona and it's monsoon season - the avg. daily temp the last two weeks is nearing 110! Yesterday a storm blew off a big chunk of the Mayo Hospitals 5th floor wall! It looked like a white tornado touching down to the ground - quite a storm! So because it's so hot I haven't gotten a lot of walking in except in the beautiful indoor malls. I once did a 30min walk outside. The scale says I've gained - gasp - in my week here so far! I hate that - but my routine here is anything but routine....won't go home till the first of Sept. If you could -- you might want to start a binder with your lab records in it, scans, all your medical stuff. That way you can track your yearly A1C's and the actual 'number' of your fasting sugars. I do know that a few years prior to my suspecting higher than avg. sugars I was with hypoglycemia -- learned accidently in a hosptial orientation program learning their brand of glucose monitor -- we tested me and I was like 60's after lunch - they wondered what my sugar was before lunch! But now it's like double that - so I'm on board for diet and exercise as those 2 things I can control. It's hard - very hard to do when exercise causes pain - that's been a major hurdle for me to get over -- that even though it hurts and it's hard - I'm truly better off doing it to the best of my ability! Good luck to you!

Hi again ~ Well I saw nephrology - as a referral for the HTN - and my 24 hour b/p thing wasn't done till an hour after that consult - so I still await those results. The guy asked if I had ever had testing for 'why' I had HTN as no one in my family has it but me. I told him no aside from the cats and mets to rule out pheochromocytoma (neg). That's when he said that truly they can only ever figure out 2 to 3% of people's 'why's' to essential hypertension. So in any event he did order some other labs and urine testing - I seem to remember aldactone and some other terms used. Then he said for good measure he would do a CT scan or kidney ?arteriogram or some such thing to make sure the arteries are okay there. I'm to go back on Bystolic 2/5mg, take only 160mg of Diovan and the full Diovan daily....to help with the highs and maybe get rid of some of the lows? Whatever! I think he said he may swap out the dyazide with spironolactone instead - but I have no idea how I will know what he recommends - maybe the neuro will let me know. I'm so so tired .... of all of this and in general...but tonight is the sleep study - so maybe I'll sleep for a change! I was told that they've even been known to wake you up if you are having a lot of apnea - and put CPAP on you and begin titrating it for you personally - all before the study's done! Or possibly do a part two sleep study test on Friday if this one ilicits anything. I will check in again tomorrow or the next day to update ;-)

Hi ~ Well as is usual for my group of symptoms - nothing is cut and dried - nothing seems to jump out and grab the docs - but they sure are trying to figure it out for me. I've seen neurology, rheumatology, sleep doctor, nephrology and had a boat load of tests almost each and every day. Tonight is sleep study number one - tomorrow is appt. to discuss those results - and then I see neurology again to do a follow up visit, tomorrow is also a CT scan - today was more blood and urine - tomorrow is a repeat of the serum catecholamines because the tech I guess misunderstood and did only the laying down kind - not the laying down then standing kind - in any even the results don't come back for awhile? Today I just broke down and cried in the Mayo Chapel because I feel like crap - I still have residual worse pain from my pain crisis day on Sunday ... I'm tired and not one single thing has come back with the great AHA moment we all hope for. When the referrals pile up and no one is able to connect the dots with anything you are left with this multi-factorial debilitating group of symptoms with no name..... But no reason to get too disappointed I suppose. When I came I knew nothing - perhaps when I leave I will know nothing - no harm in trying to iron it all out though - in fact I'm kinda proud of myself ... this has been hard as heck. I'll post later on tomorrow if I learn anything from the repeat consultation with the doc... Thanks for asking!

I had one doctor act weird about my use of the term dysautonomia...she said 'so what!' Then she said, 'dysautonomia is like saying you have a fever! who cares if you have a fever - what we want to know is what 'causes' the fever! To which I replied well okay wouldn't it be likely from joint hypermobility syndrome? Then she said 'well maybe it is - and I don't treat dysautonomia from that - only MS etc..' So just another tale to tell I suppose. I'm still in the dark about my symptoms - which seem to be a sort of hyperadrenergic state, chronic pain, maybe some OI, definitely hypertension - but I'll keep pursuing things as I am and hopefully something will turn up that's treatable.

For a few years now my hbA1c has been high normal of just slightly abnormal - ranging from 5.9 to 6.1 So I guess that means my avg. daily sugar is about 124 to 128 or so. My fasting blood sugars are usually now about 115. My glucose tolerance test - the 2 hour kind had me at 115 fasting and I drank the stuff and then 2 hours later it was 118. So while never having been told officially I'm diabetic - those numbers to me suggest that it's time to do something/anything to correct them -- as I'm staring diabetes in the face. With diabetes your fasting needs to be 126 or higher. So my numbers aren't staggeringly bad - but I'm being tested for things now that can relate to having higher than normal sugars such as small fiber neuropathy. I am in the midst of a major weight loss overhaul - and exercise program to enhance the healthier eating. I think for optimal health I will purchase a few books or read some articles on what comprises a 'diabetic' diet. I know some basic do's and don'ts - & a bit about foods high in their glycemic index or low....but by no means am an expert at it. So till I read that - I just do my best with a reduced calorie diet loaded with 5/day fruits and veg, lean protein, decreased fat, whole grains etc... No one has ever mentioned insulin resistance - but a doc recently said this was likely 'pre-diabetes' - I do have abdominal fat and hypertension - so those 3 in combination are not anything to fool around with I'm told......... Good job with the exercise!

Hi Cindeebee & welcome! I'm a newbie here too - & I'm glad you found these informative caring people on the forum! Issie's right - I'm getting testing done - last week and this week. Just found your post tonight - I would have written sooner but somehow didn't find this till now. You've got quite a story....don't give up though! You seem to have great common sense and great intuition in navigating the waters of clinicians that don't seem to provide advice that would be conducive to your best health - through your 'filter' .... Good for you! I learned that the discipline that takes care of crazy blood pressure is Nehprology. I am tomorrow going to have a 24 hour blood pressure monitoring study done...and somewhere in there is an appt. to see Nephrology as well. If I learn anything valuable I'll definitely post and let you know what was said. My monitor won't be done till hours after I see the doc - that's just how things worked out with Mayo scheduling - but maybe he'll help me just the same. I take Diovan and I guess that clouds ANS testing - but no one wants to take me off of it - because I do get pretty hypertensive. Because AZ is so hot these weeks I had to stop the dyazide diuretic because of how much I'm sweating. I also stopped the Bystolic because just before I arrive here I bottomed out with hr and bp. So again thanks for writing - I don't have any diagnosis yet at all.... I do wish you well - I get so aggravated at doctors passing out anti-depressants like candy for anything that they cannot handle....they should be the ones taking the dang pills for their discomfort - not the patient with complex symptoms...lol - hang in there - I'll do the same - and maybe you could see Nephrology if you haven't already? nowwhat!

Laughing - I can so relate to the upper eschalon of clientele I see at Mayo....but I also see others with less visible signs of the dreaded "wealth" lol.... What I was overhearing was patients with Medicare in the line-up on the floors & with other insurances as well. So if traditional Medicare is an 80/20 plan - the gap policies pay the 20.... But then the 15% more is loaded up onto the patients bill.... I guess I'm reading into this that mayo's EKG price is more than say a county hospital EKG for the same test? I guess it's a good thing that there is a cap at 15% over Medicare's payment out - well that's what I'm understanding so far right or wrong... My most recent worry about Mayo's billing is that if it is exhorbitant in comparison to other places - even if my current insurance is a provider -- and if I've paid my out of pocket max for the year - right when the insurance should pay 100% -- the fine print is often they will pay 100% of the usual and customary rates of reimbursement for charges.... Pretty scary to think I jumped into this thinking I'd be pretty much covered for a lot of what's done...to end up owing a ton because they charge too much. But I guess I'll pray for the best possible outcome and deal with the fallout when it happens down the road!

Do not whatever you do give up on finding the source and all possible healing modalities for that group of symptoms.... I'm very skeptical of that Physical Medicine and Rehab doc's assessment based on what you wrote. PM&R docs most often go into a Pain Medicine practice and love to do those pricey modalities like epidurals etc...and rarely do I find them doing anything at all with true Rehab type stuff....they leave that to the PT's. A few add to their practice the perfomance of diagnostics such as EMG's. But what you describe is not only of that specialty to my way of thinking. It just seems like some piece is missing. Have you had an orthopedic surgeon review your case and records very recently? It would be good to collect the records you have in orderly fashion and perhaps go to someone really known for their expertise look at the bigger picture once again - even though you did see a back surgeon. Maybe at a different major university center or another tertiary care center. Has neurology ever entertained the notion of Complex Regional Pain Syndrome or something of that nature since your original injury was traumatic? There are good articles on the web about it and maybe this is what's going on since your accident? What is a QSART test btw? I recently had a skin biopsy that took superficial tissue from 2 spots - ankle and thigh - that was sent for staining and diagnosis of the nerve fibers...is that what you had done for the small fiber neuropathy? It doesn't seem to me that your major symptoms (like of large fiber neuropathy) would be caused by the small fiber stuff. Have you had EMG's done of at least that affected leg up into the lower back? That would show nerve damage of S1 origin.... Did the MRI done use contrast? Anyway - I sort of get the idea that you are getting close to your answer and need to not give up -- someone much smarter than me that's a doc will hopefully nail this for you - and soon. You deserve the best quality of life possible...... blessings your way.

Big hug and I too hope you get past the fear and into the present moment - of you are okay - very strong - and will see this time pass as well - to a brighter future. It feels terrible - my experience most recently is with a friend of mine. She was married 20 years to a guy who was horrid to her and her two young sons. She for many reasons stayed well past what many people would endure. Then she finally proceeded with divorce. She was threatened and bullied etc...but in the end it came through and she is a free woman. Her ex is still horrid in bullying tactics etc and is under a personal protection order to stay away etc. BUT then she buys a new house (her mom gave her the money to do so) - she finds the guy next door moving out of his house -- they start chatting, which leads to dating, which leads to HE PROPOSED TO HER AND SHE SAID YES. All this turn around inside of a year and a half. Yes I warned her about rebound relationships etc......but she just keeps on as if he is "the one". So right before my eyes I saw total desperation and destitution perhaps to a fulfilled new life with new abundant blessings. Yes she has to deal with the bully as he's the dad.... yes she has to now join the work force where she'd been a home schooling mom for 7 years not working -- a lot of challenges to be sure.....but I never saw any of the 'good stuff' in her future when things seemed so impossibly hard. So I share this to show you've been through hard times and survived and you will get through this as well - nothing stays the same -- So hang in there - better days are ahead! I hope things move forward for you - and you get the supports you need through either community resources, church, family members...someone will perhaps surprise you in their capacity and willingness to help - stay open and hopeful as you do!

I don't know....I had the serum catecholamines test that was 'not' the one that compared lying down to standing. It was lying flat on my back for half an hour in the dark to simulate total calm (but then they turn the lights on very brightly lol & draw your blood through a hep lock placed prior to the test) So there was no comparison - they simply did the lab draw after the rest time. Maybe that's a starter test somehow ... guess I'll find out if I need the other one. Yet I'm still not clear which test it is that dilineates a hyperadrenergic state. I got a vague 'well the ANS studies didn't come back too shabby at all - sort of answer' - with qualifications that in no way says it's NOT ANS caused symptoms. I haven't had a 'storm' in a few weeks - where I sweat like unbelievably too much with a bounding heart rate that races and pounds in my ears..... Yet I did have a pain crisis day yesterday....totally wiped me out and brought me to tears -- yet I still went for a 30 minute walk - to see if it would help. It did not help the pain - probably made it worse. But I have to move or I feel like I will simply rot from the inside out and die too soon. I feel pretty horrible lately - yet aside from the pain day on Sunday - and the not sleeping ... I haven't felt like I was going to pass out for OI and low b/p. Crazy how when you want things to act up to verify and validate through tests -- things seem to be a bit calm. Oh well - it's nothing I can control - we know that. I did do that blow in the tube thingy that reproduces I suspect a bit of a vaso-vagal response -- which gives me palpitations - but didn't the day of the test. I did the sweat test where they put prickly things on you skin in 2 places to create and capture a sweat response and a stopping of the sweat response. Then the simple couple minute table maneuvering. As I said it was truly easy.... The tech told me to no worry about the TTT being hard - that if I thought it would be hard I was thinking of a different type of TTT done specifically by Cardiology that is designed to make you pass out = either by positioning or meds or both. I never even knew there were different kinds of TTT's by different specialty groups.... I have so much to learn! Thanks to all who wrote....... Hope you are doing well!

If you google medicare and the mayo clinic scottsdale it comes up with a page that describes how Mayo AZ does not have to accept medicare assignment for payment - so you end up paying whatever amount is over and above what medicare pays....kind of end of story I guess? It also said that people with medicare advantage programs must choose one that is hooked up with the Mayo clinic team specifically --- so it sounds like you have to choose wisely should you need the services here & you are about to start disability or regular medicare...and even if you choose the right one - Mayo is again not accepting medicare assignment - and are free to charge whatever they want for most (but not all services) some things like hospital charges and others - Mayo does have to accept assignment - it was an informative read from the mayo website.