comfortzone

Thank you so so much .... I'm really appreciative that you posted this. I have read all I could find on the neuro things on-line and came to that conclusion - that there are a few 'doubters' of this thought process as regards our symptoms... yet in the end it seems anecdotal stories are where anything fruitful begins! Word of mouth -- successes shared ... It is always hard to have 'fancy' doctors detract people's honest stories or accounts of what has helped etc.... Recently had a doc say that about EDS and local anesthetics... & he even countered what my surgeon had experienced with me having huge b/p increases and tachycardia while under general anesthesia and a local block - when he made the incision.... He was quite contentious about things and he was a geneticist... oh well. Glad the visit will be worthwhile ... I'll listen... I won't be rushed to invasive treatments ... but will definitely take their ideas to heart.... Visionaries are often labeled Quacks..... most likely because many of them are. But not 'all' of them... this we know. If all the money were taken out of doctoring maybe those with controversial treatment schemes and ideas -- people would give their ideas a fair-er shake.... But as it stands a surgeon wanting to do his craft - surgery - with earned payment when no one else is... they'll get detractors for sure!

Has anyone here with EDS seen the duo of Dr. Francomano and Dr. Hendersen from Baltimore? I guess that a lot of these crazy bodily symptoms we experience involve not only cardiac things, but neuro things as well. I have no idea how common any of our experiences are as everyone is unique and everyone's cause for symptoms likely stems form certain 'main' issues. Those issues being wide and varied for sure. Anyway Dr. Francomano does Adult Genetics ... and Dr. Hendersen is a Neurosurgeon well versed in those neck things like Chiari ... and things that EDS patients experience with greater frequency that make us a 'class onto ourselves' over and above having rare-ish conditions to begin with. So just sending a shout-out to any whose seen one or the other or both ... to ask how to best prepare for my upcoming appt. in early December. Doctors have always 'minimized' my MRI of the cervical and lumbar spine even though it says severe stenosis on multiple levels etc... So I never thought a thing of it -- as they acted like everyone has this by age 50. However there might be more to it -- as before I even saw the geneticist the genetic counselor arranged for the neurosurgery appt. So I went on line and read how we bendy types present with lots of symptoms sometimes that can relate to how we degenerate faster in our spine......& that most tests won't pick up on this kind of situation. So the gold standard for these EDS/neuro specialists is the sitting up neck MRI as opposed to the laying down neck MRI... Kind of interesting. For a time I had these symptoms of dropping things, my arms feeling like they were too heavy to even be attached to me (wanted a sling for each arm), and to hold a glass of water my hand would shake and I'd be at risk for dropping or spilling. However over time these symptoms pretty much resolved this past year - only had them 3 mos or so. I just have some neck pain and soreness...but heck most of me is sore....so I never really pay much attention to it. Can anyone relate to any of this....with or without dysautonomia? I guess for neuro - I have small fiber for sure...they say from a hbA1c of 6.0 perhaps. But aside from chronic L5S1 radiculopathy (of which I have NO idea what symptoms that causes) and my MRI's showing lots of degeneration and foreaminal stenosis severe in nature..I'm told I have no neuromuscular conditions such as MS or Myasthenia Gravis as initially pondered. Thank you :-)

I know what you mean -- I'm still looking for that 'dishwasher' -- 'bout 6'2" -- blue or dark-eyed wonder.... 6pak abs --- All I know is that I haven't found the dishwasher at my local Sears.... & soon I'll be moving.... So maybe... 'jus maybe.... I'll get that dream dishwasher after all in the new relocation spot.... Till then I scrub and slosh -- watch raw food videos on utube -- and wonder.... Who ever thought of raw foods as a lifestyle must have an awful lot of time on their hands (or a personal chopper extraordinaire with a dishwasher to boot!)

A few things I've done: If you can eat cabbage.... I buy coleslaw mixes - or angel hair shredded cabbage in bags in the produce department. With it - well I dump it in a tomato based soup for a cabbage vegetable soup. I mix it with a favorite salad dressing and eat like a huge salad. I top soft shell taco's with it, I have even subbed it out in carrot cake for 3/4's of the carrots believe it or not. I've 'extended' foods with it - I've sauteed it and added it to anything from mashed potatoes - or have used it as a substitute for pasta - with bolognese sauce over the top. I know it sounds weird - but it's already prepped so I go for it. I boil/simmer half brown rice and half wild rice in seasoned water so it's good to go ahead of time for a reheat. I use spinach in the bags. Or the box frozen & thawed. Spinach for a salad or I take leaves of cabbage either slightly boiled or frozen to make them pliable - and stuff them full of spinach that's been mixed with the rice, some cheddar, a bit of ch. onion and an egg - for a vegetarian cabbage roll pan - tomato sauce over the top. For frozen spinach thawed and drained I add ricotta, parm, basil -- layer with no boil pasta sheets, mozz and jarred marinara. I will buy the big bags of broccoli florets, stalks of brussels sprouts, haricot vert at Costco - to just dump into a steamer till barely done - shock in water sometimes and then store...they are whole and require no chopping. A big head of cauliflower can be whacked into four planks and roasted with olive oil salt and balsamic. Easy cut veg like summer squash requires just a couple knife moves - and can be put into a pan with whole cherry tomatoes, whole mushrooms, a slice or two of cut onion - maybe a few rounds of eggplant a dab of store bought pesto - and you have a simmered ratatouille - to eat plain or serve with favorite starch of choice. Whole vegetables such as sweet potatoes, white potatoes....either small baby potatoes or the idahos - baked ahead of time - can be nuked till warm for serving after pre-baked. Also whole squashes like butternut and acorn are nice to have - once baked off are easy to cut and use for soup or a puree or to stuff. If you pierce eggplants ahead of baking they can be baked whole as well - and the insides then used for an eggplant and roasted red pepper soup - or a dip like baba ganoush. You can make hummus with virtually no chopping or buy it too and serve with pre-cut crudite' from the market. You can sometimes let your food processor do the work for you if you find it's worth the cleaning of it afterward....Giving you bags of sliced or shredded carrots, celery, onion, peppers, potatoes, any harder vegetable that's difficult to cut. Dried fruits can be simmered on the stove top with cinnamon stick and clove etc...for a warm fruit compote, steel cut oats can be cooked off a head of time - as can grits. Polenta is a quick fix whole grain food - the instant takes no time at all - use instead of mashed potatoes for stews, gravies and marinara sauce. I guess you can always just cook vegetables as close to their natural shape and form as they are grown and then cut them after when they are softer to deal with and speedier? Cooking whole tomatoes into a sauce is delicious -- Having a hand-blender makes prep a snap. If you made ahead as someone mentioned your mirepoix - or carrots celery and onion or fennel.... When it's time for a soothing soup -- what you do is simmer the mirepoix with the 'flavor' of the soup item and then puree. So for a butternut squash soup - it's the carrots, celery and onion (can be chopped into pretty huge pieces for ease since you zap it anyway) and add the cooked whole squash interior, carrot soup you add the shredded carrots from the food processor, for tomato soup you add the canned or whole tomatoes from the garden, for eggplant soup you add the roasted eggplant flesh, for mushroom soup you add the mushrooms, for roasted red pepper soup you add the peppers (pre roasted at home or bought jarred at the dollar store), broccoli soup add the florets.......and you simmer this in your favorite stock in a box .... or water --- then zap it with the blender. Season to taste. All soups basically start with the mirepoix, water and the 'flavor' item. You can soak tofu in some strong stock or 'better than boullion' -- then slap it into a very hot pan with olive oil in it - crisp it well and at the last minute add a splash of soy sauce -- it'll sizzle like crazy and create a nice savory, salty - bacony like flavor -- Eat as a burger or plain as is... Berries are healthful and can be added to about anything - or simmered slowly with a wee bit of water and vanilla or sugar for a nice thick topping for french toast, pancakes, bread pudding. Good in salads - good because they can be eaten whole...salads, cereal, plain If you want to extend a fast food healthy meal - you can go to Subway and order a salad -- have them load that salad up with tons of your favorite shredded vegetables - the peppers, onions, tomatoes, olives etc... If you take that home you can jazz up home-made submarine sandwiches....your own lean turkey and the toppings are already sliced and a done deal....One large salad could top several sandwiches for the family. On the same note -- take out healthy food grocery stores have salad bars with some nice items all good to go ... pricey yes.... but if you are selective you can buy the things you know you are getting a bargain on by weight...so if they charge seven bucks a pound -- buy a bag of lettuce but get the prep intensive items and a few luxury items and assemble at home as a salad or use a boboli crust and make a fancy pizza. A good one is crust, olive oil, garlic of some kind and a half bag of spinach, a layer of shredded mozz, the other half bag of spinach, more mozz and top with sliced tomatoes - bake till done. Frozen vegetables are super healthy and good as well - Mix edamame and corn - toss with herbs, mayo, lemon juice -- I guess if you shift to thinking whole foods as more than the one meaning of close to the natural state - to also cooking them "whole" - there's less chopping involved. And when you do - once cooked they are easier to deal with. The hand blender does a great job of chopping everything to a puree' very quickly once they are simmered till soft again for soups and dips.

Enduring chronic illness is 'doing' an awful lot. The skills and patience required are huge and all encompassing as you constantly shift gears to seek what will work for that particular days challenges. It is more than a full time job. Trouble is ... I haven't seen a paycheck yet for the duty ~ But with luck and blessing perhaps we will find our niche' in the work world - bringing to the picture a good amount of skills crafted in the process of coping. Creative works such as knitting can be such an excellent mode of fostering a fair bit of healing in of themselves -- people do use art and creativity to this end all through history. It sometimes seems to me that life's good times and life's challenging or difficult times enable us to experience new insights toward compassion and kindness...hopefully there are windows of respite between difficult times to absorb the lessons and how we might help others in similar situations. Or if not help others in our awareness - I'm quite certain we do a fair bit of teaching in our patient persistence in spite of obstacles - to those that view us in our situation. Sometimes that can foster new friendships -- but granted sometimes people shy away from those suffering. In any event I am inspired to seek out something that can utilize my skill set from this thread. If it ends up that 'maintaining' ADL's and improving health as possible through nutritious eating, hydration, exercise etc... is my full time 'job' -- well I'll embark upon an acceptance mode...pinch pennies....and keep on keeping on -- Something always happens to the good in life -- nothing ever stays the same... for this I am truly grateful!

That is so funny! LOL.... Very creative -- excellent happy ending ... dinner and a ride - what could be better :-) Thanks for sharing!

Innocently went to three stores today to try and buy a new bed that's more suited for joint comfort..... Not a bit shy I started plopping onto several beds at the first store ...down, up, down, up... not even thinking. I start to feel flushed and kinda warm and decide to get some air. Next store.... same drill -- up, down, up, down -- all around the store testing beds... I hit the Latex Mattress and whoooooa -- this odd motion sickness hits. I get up slowly and the sales lady says, "you ok?" I tell her the Latex bed has motion that is rather nauseating -- she says I'm the second person to tell her that thus far. Okay so STILL not remembering my orthostatic issues of late - I go to the third store....and plop up and down on a bunch more beds....till suddenly I couldn't move LOL... So I'm stuck in or on this bed....& my body has just crashed big time. Nowwhat! I super slowly get out of the store........and feel absolutely terrible. Cannot even think to drive home. So I stop at a little sushi joint and start sipping Miso Soup slowly -- for maybe half an hour -- drank some water and began to feel human again........Good grief Charlie Brown I thought So anyone else have any funny stories to share about getting caught doing something that maybe used to be a non-issue -- only to find in the middle of it -- that now it is an issue? I can laugh now cuz I'm home and still bedless....but my old bed looks pretty inviting tonight if I think back to the earlier part of the day! Just saved myself a bucket load of money I guess!

Doxepin has been known to be an effective sleep aide for insomnia -- but in teeny tiny doses. Not the normal dose for anxiety or depression or the other things it's prescribed for -- but just a wee bit -- like 10mg at bedtime for an adult. It is a tricyclic antidepressant - an older drug - another one of those meds you need to slowly taper off of in many cases if you've been on it awhile. Overdoses can be very lethal & there are drugs you cannot combine with it such as MAO inhibitors. A few years back was given it to try for insomnia but it didn't work for me so I stopped it after a week or so....

Just wanted to let you know that I was homebound when I applied for disability and every bit of it was done per the telephone. The people were concerned and did a great job..... True it was a very long phone call -- but nonetheless there were no meetings involved. In some cases the medical records themselves speak volumes so you don't have to. For awhile I tried baking from home and taking the treats to restaurants - ..to try to get them to hire me as a pastry chef. It worked -- but it is proving out to be too difficult to be on my feet.... So I'm right where you are at.... desiring to work -- yet what will work? I asked my banker if I could ever try banking as it's always so quiet and you get to sit down most of the time -- even though I have no training in it. He said absolutely - But what if you have days where you don't function well? I guess it's the same at a bank - or at home....you can only do what you can do -- and if you must lie down - you lie down....pretty darn frustrating for sure....I have a hard time keeping up with day to day activity so I hear you on the struggle -- Good luck in getting creative to work from home :-) I don't think Chase Bank has a dysautonomia 'lay down before you fall down' break room -- so prolly nix on that idea!

You each have been helpful in your thoughtful replies. I am feeling better since I posted ~ so I'm glad of that ... but the mystery of those 'out of the blue' times that knock me down baffles me. In regards to your suggestions and comments.... I'm trying to get in to see Dr. Brad Tinkle in Cincinnati or Dr. Clair Francomano in Baltimore by years end....theres also I believe two more in the USA that are the leading docs on connective tissue disorders - I'm looking forward to that happening for sure. I was formally diagnosed with Hypermobility Syndrome - with current thinking by Dr. Tinkle and others that it's one and the same entity as EDS-HM or Ehlers Danlos Hypermobile type. This was by a genetics department at a university medical center. Pain specialists...wow. It's hard for me to even accept that they are a part of my life now - but they have to be - so I'm happy there is such a specialty. I am going to call Mayo to see if any one of the specialists I saw would feel comfortable throwing out a name of a practice in the Phoenix/Scottsdale area where I might get in touch with them for help. There's these two young guys in practice and it's kinda weird how they host a Pain Show on video and are on local talk shows etc....way too much business hype for my taste - but while they may be over-zealous in marketing their business...if they are good at what they do - I'll bite the bullet and give 'em a try. Stress....yes - I can tell I'm stressed because my healthy eating and exercise has gone by the wayside --- which only compounds issues. So I'll get to weight watchers now and begin againg. If anyone wants a good easy book on EDS -- I love both of Dr. Tinkle's books - The first one on Issues and Management of Joint Hypermobility - A guide to Ehlers-Danlos Syndrome and the Hypermobility Syndrome -- and the newest one -- A Guidebook for EDS and Hypermobility Syndrome (an expanded version of the first book)....they are on Amazon and pretty much tell the story. It's helpful for me to have them nearby when I do get crazy pain times like the one night before last. They are affordable too which is good because I give them to my doctors and with the move coming up I got a couple more copies. I do take pain pills for sure -- but we'll see if these new doctors have any tricks up their sleeeves for adding treatment modalities I don't have on board yet.... Yes to the multi-faceted aspects of pain. The small fiber neuropathy, the osteoarthritis, the arthraligias and 'itis's' everywhere....headaches and the rest ... back etc... Each respected for the disbling impacts on daily life -- each different -- but combine them all and you can be pretty sad for a time.... BUT we get pretty creative on how we deal with these things and again thankfully there are good clinicians to help make sense of it all.... Thanks everyone -- and more pain-free and reduced pain days ahead for each of you!!!

i found out what the problem is my doctors recepionist told me that mayo sent them a letter stating they did not want to see me so i called mayo and they told me she was lying that i was still on the waiting list and if my doctor would call them i could be seen sooner so i believe my doctors recepionist is mad at me for some reason and told my doctor lies about me and when i told mayo this they were mad and wanted my doctors phone number to call tostraighten everything out so when they call and hopefully speak to my doctor i will be headed to mayo. Finally Ken........Yipppeeeeeeeeeee!!! While it's really terrible all you've been through to get to this point -- at least now you are fully moving forward -- GREAT NEWS! :-) Keep on smiling Ken! You persevered and resolution is forthcoming ... good for you!

Okay so finally my blood pressure has evened out a bit. My lows aren't for the most part too low -- only once this week did I get really faint standing and nauseated. The highs are great - only one diastolic over 100 and only 2 over 90. So I'm ringing in at some really nice numbers. But I feel LOUSY. It started with family stress....d/t that I quit my walking for exercise. It hurts for me to walk so it's easy to not do .... yet I usually press through the walk and the after pains. But not this past weekend. Family first type of thing. Today I went into work for 3 hours on my feet as a cook. I only took one pain pill before work. By the time work was over -- I was a train wreck with pain. A full on flare...that brought me to my knees. I have been in bed now since 5pm...it's now 10:30 pm. I've taken pain medicine -- different kinds to get it under control. What a waste of an evening. I'm supposed to be packing for a move out of state and I was laid low and able to do nothing. WHAT causes this? For you EDS'ers out there --- Is this the norm when you have this stuff? Everything on earth has been tested and is negative - so that leaves probable nerve and muscle damage in hip area from surgery, small fiber neuropathy, and all the tendonitis's of hands, elbows and shoulders. Thank goodness I didn't have a headache or backache. The limbs were enough to have me completely beat. Is this my hypermobility syndrome pain? Does menopause do this? Did my usual orthostatic intolerance (today was the day I got nauseaus at work and felt like I might faint) trigger pain? I wore my compression knee highs... Does not drinking enough fluids do this? Could it be because I haven't been exercising through walking? I'm getting really scared .... like I might not ever get over this disabling condition.... As many of you suffer POTS and such - I know you know what it's like to be frightened about things your body does -- that just don't make sense. It's crazy making. One thing gets better and then something else gets totally worse. I think I need a very smart pain management doctor to help me -- plus to see an EDS specialist perhaps. My pain guy is great -- but wants me to try a very powerful drug that scares me to no end ... so I've refused. Good thing as I'm moving soon and it's hard to be tied to a pain doctor because of being on a powerful medicine. Has anyone tried the Arizona Pain Specialist group in Scottsdale area? They are on my list of 'to-do's' -- I need help in knowing what to do other than lay in bed and not move at all for hours after taking medicine....maybe I have to accept this? Or do I dig deeper for answers? Right now my legs feel on fire, my feet like sharks are gnawing on them, my arms and hands feel stiff, and I'm a big wimp. Any tips for coping?

exactly ... sorry you are right it is paroxysmal atrial tachycardia for sure!

Was it Vasovagal syncope or a vaso response? Have you ever read about the rare condition called Stiff Person's Syndrome? Stiff Man's Syndrome is another wording ... Anyway emotions can be the trigger and then all sorts of body wide stuff happens.... You might want to google it or read up on it in the braintalk forums...

I'm pretty sure that the law states that no provider is allowed to charge anymore than 15% above what Medicare pays out. So you can still utilize Mayo's specialists -- an example on the website was to have a bill where you had to pay your 20% copay (or maybe not if you have good Gap insurance coverage for Medicare) -- but over and above that Mayo can charge for something 15% higher.....and you must pay that. So yes to use their services with Medicare you can plan on paying your co-pay and additionally they can sting you for 15% more .... More and more doctors where I live do not accept Medicare assignment as they don't feel it's fair to get paid so little. There was even a 'whiney' letter posted all throughout a large cardiology practice about people needing to excuse them if they seem stressed!!!!! That all this Medicare nonesense meant they were overwhelmed....but not to worry they truly did care about us....as they discuss not taking Medicare assignment for payment. People are having heart attacks and I'm to worry about the doctors bank account???? I thought I was going to get sick right there on the spot. What a bunch of unprofessional cry babies.

Hi I was under the impression through my own very recent experience that you do not NEED a referral to go to the Scottsdale AZ Mayo Clinic offices. True, I used private insurance -- But because I was insured -- and Mayo is a 'preferred provider' for my insurance .... I absolutely did not need a referral. I called the Schedulers....and they made the appointment. Every so many weeks the calendar opens up for any particular doctor and they fill it up with waiting patients. You can ask the secretary to give you a call as soon as the next months schedule opens up.....so you can book your appointment. I guess I assumed you didn't need a referral for Medicare either - when you see a specialist. But here's where I may be wrong.....if they told you you HAD to have a referral ... well you do have one from what you wrote. So now it's a matter of asking them in direct and pointed language -- which month are they scheduling for now..... and then WHEN does the schedule open back up again for -- which next month..... Tell them in no uncertain terms that you will call daily if you must -- to get on a list for cancellations or to at least be scheduled NOW - even if it's a far out appt. Another tactic would be to try and see a totally different specialty in Mayo where you are sure you need care as well - that has a shorter waiting list....say cardiology or whatever else ails you.....then once you are in the doctors office at your appointment --- that doctor's job is to plug you into all the doctors you need to see in a timely fashion. Yes sometimes this means you wait 'on-call' in a waiting room for the chance to be squeezed in suddenly -- but it's a great system in the end -- I saw 4 busy doctors inside of 2 weeks and had numerous tests. So is there by chance a related specialty you might benefit in seeing there -- ?? Just to get yourself in? I'm only brainstorming here trying to think outside the box....cuz I wish you didn't have to wait so long!!! Blessings!

What I learned recently is that yes they do bill Medicare for you. When you get your bill by law they are allowed to charge up to 15% more than what Medicare will pay so you may end up with out of pocket costs. So they don't accept 'Medicare Assignment' or the amount Medicare pays as 'enough money'. Also if you are to go to a primary care doctor - they flat out do not accept you as a new patient if you have Medicare as your insurance. However....if you have good private insurance initially -- but then switch to Medicare -- they will keep you as a patient I was told. It seems that for routine primary care you cannot see a Mayo doctor with Medicare as your insurance - unless you self pay perhaps. Not wanting to confuse things - just that I spoke with them very recently and this was what I was taught by the billing office. Good luck at your appointment(s) today!

Interesting to read this thread. I'm in my 50's and looking back each decade of life I think I've had periods where heart dysrhythmias had been worse and times where they've been not so bad. But it is consistent since my teens that I do get irregular heart rates. I too do not have POTS. I get as you the plummeting B/P when standing too long on occasion. This comes with symptoms of 'lay down or fall down' type feelings. Recently the holter showed short runs of PAT. No more than ten beats with each occurence. I believe it is Premature Atrial Tachycardia - where there is 'one' focus of contraction that is making issues and not many varied spots in the atria. PAC's - premature atrial contractions I believe can come from multi-focal areas. There was some other ectopy as well PVC's and such with an average heart rate of 100. Less than a year prior while trying to 'work' as a home nurse my heart would just fly for no reason - I'd get off a patients couch and sweat would be pouring off my face. I grabbed the pulse-ox off the patients finger and slipped it onto mine and it read 140. I was like ??? Weird. Anyway I couldn't keep up with that job so had to leave it :-( I'm on treatment for being hypertensive most all the time. Seems the getting up out of furniture and out of bed causes surges of catecholamine and resulting rises in vitals... I had all the dysautonomic testing and it came back really good - no issues. Not an entirely 'fair' test as I was on Diovan for blood pressure at the time - but nothing glaring stood out with the simple tilt, valsalva and sweat thing. The lying and supine norepinephrine showed a very robust rise from lying to standing - which I was not surprised at.... I truly believe my fight or flight mechanism is not quite normal. This causes labile b/p....I guess small fiber neuropathy can cause pooling in legs too. All throughout my life (but not in recent months) I'd get that super surge that would last usually 6 to 8 hours... I remember trying to sleep with bounding HR in my ears for no good reason -- I'm lying down for heaven sake! And sometimes in the night I'd wake up with it still going ... or wake up and it would be blessed gone and back to normal. But the heart thing. My brother 2 years younger and I have always had bad times with lots of irregular heart beats...he went the EP route and ablation was mentioned as one way he might get relief. But the way ours will wax and wane in life - well it hasn't killed either of us at age 50 so I guess we 'deal'. Once his said ventricular tachycardia and they wanted him rushed to the hospital....I was so scared for him. He decides to 'do nothing' as 'my hearts done this forever'.....and well he's fine - but I still cringe and wonder if that was a mistake or a real thing. Now I'm on a beta blocker. I still get the palpatations daily. But what's different is for the first time I'm with a heart rate in the 60's to high 50's all the time. I was never much under 90 before taking it. I've been ordered Clonidine to try for the labile b/p in addition to the diuretic and beta blocker but I'm holding off on that just yet....things are at a lull. I do have hypermobility syndrome - yet not too much credence for my symptom group was given it recently (my fault as I pressed about current issues - not a life-long perspective) so I am going to see a specialist in Baltimore that deals exclusively with connective tissue disorders and maybe get a clearer picture about dysautonomia in my case. Good luck to you....

I'm horrible with the application process of donning these things! I bought a garment at Macy's and took it back as I could not get the thing up my forearm...let alone my body. So nix on the body garments. Next I went to the pharmacy and told the woman I have a terrible time with my hands and doing these type things....so I have a pair of 15 to 20 knee highs -- a pair of 20 -30 knee highs and a pair of 15 to 20 panty hose. They are Jobst. Insurance paid for the two most expensive. I quite literally could not manage the 30-40..... I guess it's the hypermobile hands. And trigger finger in my right hand. Or I'm just weak. Anyway I felt like a wimp and thought they wouldn't really do much to help me at these low compression readings -- but as hard as they are for me to don and take off .... well they have got to be doing something.... so I wear them to work. And I can't wait to peel them off when I get home. I'm going to look for a desk job soon as this standing stuff as a chef now is killing me. I have worse pain because of it -- and my vitals get weird on occasion too. But till then it's me and my not so strong compression sox - that truly feel like they are helping - well at least with vein varicosities if nothing else. I don't think it matters if you are normo-weight, thin or obese -- these stinkers are just a chore to apply!

Thanks for sharing that. I looked at mine over the years and the MCH and MCV are uniformly high -- but not a 'high' high -- meaning if the reference goes to 33 -- then mine will be 33.1 So almost high normal - yet not. On the hemoglobin - and hematocrit ... near 15 but not over and the corresponding hematocrit at the first number of abnormal on the high scale. So high -- but not terribly high. But again - why would it be that an EDS'er or a POTS patient have these numbers? Is it a hydration issue? A blood volume issue that isn't hydration related? I am curious. I also wondered if these numbers ever impact the HbA1C unfavorably because no one in my family has diabetes or such issues. Yet I am always high normal at 5.9 - or 'officially' pre-diabetic with a 6.0......... Anyone care to comment? Thank you again Firewatcher - you folks are so filled with knowledge :-)

You most certainly have my prayers.... I bet the appeal will win out and you will come out of this okay.... Till then hang in there...stay focused...& remember if one door closes another surely opens... Blessings to you! (Sounds like you've come a long way ... keep moving forward...always forward -- YES use your docs to go to bat for you big time!)

Bad Sleep makes everything worse. I've had it since 2006 in a severe fashion. I balked at the sleep study idea suggested at first because while married 14 years - I never snored and never stopped breathing per the husband. Yet none of the meds to put me down would work - not even SIX mg. of ATIVAN!!! Big time problem. After trying all the meds offered which were many and varied I gave up.... And just would not sleep well...and every few months a couple of back to back nights with no sleep where I felt close to death. Finally -- as I was trying to uncover any possible reasons for feeling my symptoms as I do ... I asked for a sleep study. I never wanted to because even if they did do one - and found sleep apnea -- I knew I could never tolerate the mask. Okay so I have the study and I find I have sleep apnea. After a recent 35 pound weight loss - it's classified as mild where I only stop breathing 12 times per hour or some such thing. But my 02 sats were bad dipping to 72%. I earned the coveted CPAP machine. I am only on night number 5 of wearing it .... & of course I despise the thing. I do not wear hats, glasses, sunglasses -- nothing touching my head - not even makeup! And I have to put THAT on? LOL... I'll keep trying it - because maybe it will help me if I persevere ... & in the back of my mind was the severe morning headache I had after the study where the sleep tech told me 'no wonder you have a headache - you were oxygen starved'..... & the times I'd wake up gasping. During REM sleep was when my SATS dropped so low each and every time... weird. So for what it's worth -- yes I should have had this done at least 3 years ago....yes CPAP is gnarly......BUT if you ever want motivation to lose weight - this is surely the ticket - as they say if you do - you can often times get rid of the CPAP...........I'll look forward to that day for sure!

Would anyone mind posting what their high hemoglobin's are and the MCV and MCH kind of numbers are? And can you teach me what this has to do with anything dysautonomia wise? I am ignorant - and while I don't have my labs handy this second I did look at them just the other day - and the MCV is high and my hemoglobin for a woman over age 50 was near 15. I believe my entire life my MCV and that other M-number have been border-line high or high ... and I don't know why. Once a doctor asked me if I drank a lot...??? I told her 'no I do not' - then she said that sometimes that can be seen as an early sign of drinking 'damage' ... well that shoe didn't fit -- but I still don't know what this means....and also how it relates to this forum's kind of issues.... thanks guys!

Thanks so much for the encouragement Reen....... That was so kind and thoughtful and so appreciated! :-)

Hi Lissy -- By consultations...do you mean just a 'first appt.' time where you know in the back of your mind you are interviewing the new doc for the job? Or is there actually a certain way to arrange the appt. with an office and the office's billing - so that you are going for a 'consult' --- even if it's a primary ... where it might be coded differently and hence charged differently that a new patient visit? I guess with my twice a month appt's with my primary here in CA - I never actually got billed for an official "physical" this year. So for my getting established with a new doctor it will be billed as a Yearly Physical when I have my first appt. If I change my mind and go with the Mayo Clinic system - while I have some good insurance they suggested I make my appt. using the 'annual physical' as the reason - and then I will be accepted into the practice. After that when my insurance switches to Medicare - they cannot turn me away for that....whereas they will not even give appt.s out to people with Medicare upfront. Six of one half dozen of the other I guess - but there is not any huge love for the Mayo primary care situation I've read....my only reason for entertaining that was that the primary would have easy access to all my records there and easy access to excellent referal docs... thanx!