comfortzone

Happy New Year everyone! I got the strangest phone call on New Years Day ... from my neurosurgeon in Baltimore telling me I need neck surgery on a voicemail! Anyway I've had a very complicated set of symptoms after knee replacements the end of 2008. What's been teased out thus far is that somehow some damage occured neurologically due to the surgery - perhaps from the spinal - or maybe even the general if they torqued my neck out of whack. Also they found small fiber neuropathy, an inherited connective tissue disorder, a replaced knee wasn't installed just right, orthostatic intolerance, a very labile blood pressure ... this kind of stuff. When I went to see an EDS specialist to see if my EDS was the answer to my leg weakness feeling and other symptoms - I was turfed to a neurosurgeon even though I initially thought 'no' - I have a wonderful neurologist - why do I need a surgeon? And he felt my leg weakness was from my neck. He looked at my neck MRI and LS Spine MRI - and thought I had an unstable neck. I had a CT in Flexion and Extension after that appt. per the docs request - and happily it showed no instability at all. Just further verified what my MRI from 2009 showed. Severe foraminal stenosis on multiple levels and also at C4C5 an area where there could be some cord compression from osteophytes, herniated disk - the usual causes. So I thought no surgery would be needed. A spine surgeon in CA told me that 'this is a normal 53 year old neck'..... The surgeon in MD looked aghast when I told him that's what the guy said. So it seems he thinks I actually have some of my symptoms caused my Myelopathy for crying out loud. Cervical Myelopathy I guess happens to some as they age -- with the arms and such having symptoms of weakness - and sometimes surgery can help - but I read the longer you don't fix this progessive chronic issue - the less likely you will get improvement from a surgical approach to helping the situation. Thus far my awesome neuro doc locally has helped regulate my blood pressure, helped my 'running out of gas' issues somewhat through the use of Mestinon. He's also kind of the guy who actually gives me hope in my situation - which pretty much feels like I've been gifted with quite advanced age -- in my early fifties. He's my hope in everything. I provided him with a copy of the CT disk and will await to hear what he thinks - but pretty much with my outcomes from the other surgeries - I and he both lean toward NO surgery. I'm to keep an open mind - but I never recovered to better function from the last surgery really... The surgeon proposes plates and screws and such on three levels and foraminotomies on 3 levels bilaterally too...Says my CT was pretty impressive and he feels the operation will help with my leg weakness issues etc. Has anyone here had their neck be a culprit for symptoms? They wanted me to rule out a tethered cord too - with urodynamic testing -- but I think that's going a bit overboard perhaps at this point? Maybe not... but I sure thought this was an odd way to hear Happy New Year! A doctor saying, "Yes Nowwhat! you do need surgery" Have any of you had fusion surgeries? Disk surgeries? I do know that surgeons just love to get in there and do surgery -- it's crazy how they love it -- so I'm skeptical - very skeptical. Yet this guys curriculm vitae is like 32 pages long! Very impressive. Sigh.... what to do.

I've been on this for about a month perhaps. What I noticed at first was like what you were describing with your son ~ a bit more energy... So much so that I felt it might be causing me a bit more diffficulty in sleeping than my usual problems with sleeping so I backed off to just two per day of the sixty mg tabs. Then came the sweats....I have thought myself this summer to be sweating 'all of a sudden' - where I have never been one to break a sweat in the past - and quite a bit. My sweat autonomic test was normal. After Mestinon my sweating became riduculous lol... Just saturating clothes -- so I'd wear the wicking type of fabric to help. I gave up on the med after a couple of weeks of sweating - the GI stuff came and went in one day - I was fortunate I hear to have that be a non-issue. Well low and behold the sweating just continued and continued.... even though I stopped the med. So then I began to attribute the sweating to a normal menopause symptom - though a pain in the neck - it might have just happened in conjunction with the start of Mestinon. Then came fulminating hot flashes -- at least hourly... I was miserable! I used to have one every few days or once a day and they were a non-issue. But these were fiery and truly uncomfortable with them so rapid in succession. So then I figured - well if it's not the Mestinon causing me the sweating alone - and it's menopause I guess I'll begin taking it again - because it did seem to help me energy wise. As soon as I had taken it again for a week - the sweating decreased a whole bunch and so did the hot flashes. Weird. It's like it began to regulate them so they didn't bug me so much. I still sweat more than I have before in life - but not like in recent times with the med and the trial off the med. Now the hot flashes come only twice a day - not hourly. So in the end I've decided to stick with Mestinon - it helps my energy I believe thus far - and helps with my fluctuating menopause hormones I guess... I hope your son continues to do well with the med.... Sounds very promising indeed!

It sounds pretty scary to me to be taking an injectible medication without being under a prescribing doctor that ordered it. Essentially you are injecting yourself with a medication that alters some major components of what keeps us alive of your own free will without a doctors order. Now I do know the frustrations of having doctors not see things my way ~ or having to doctor shop to find one who is skilled in the more rare maladies of humanity to get competent care... I have not though ever shopped to get a certain medication on board for my better health -- have been blessed enough to have conversation that would show me whether or not a doctor had a good ability to listen and learn -- while bringing all their expertise into the equation as we looked at options. Secondly when the med is causing unwanted side effects - your advice again is from non-physicians.... this seems like a set up for disaster. BUT with all that said -- I am truly rooting for you to find what helps you best - to get over this horrid batch of symptoms you seem to have had for some time now - and get feeling better. We do have to think outside the box so often and it gets frustrating and tiring -- Just be careful - very careful...... Because a medication does not require a prescription does not mean it is safe for a healthy human ... let alone a person with many unusual symptoms from an illness that messes with vital functions of the body.

I no longer get the racing heart thanks to medication - but I continue with what seems like progressive muscle weakness. My legs get tired and I start to drag my feet and almost trip sometimes...have to use arms to push myself out of chairs. A person that sizes you for orthotics and different braces etc... told me I was losing muscle mass in my hands after he looked at them - saw a hollow at the base of my thumb? Anyway no neuro has yet given an explanation for my weakness. Recently a neurosurgeon thought it could be my neck with ruptured disks and mild cord compression and severe foraminal stenosis... but other people say that's kinda normal for someone 53. I feel like I'm getting some sort of weird myopathy thats getting worse - or a muscular dystrophy of sorts... I know lots of you get this heaviness and weakness in your legs and body too.....has anyone ever told you the 'why's' of having this and how it relates to POTS kinds of things? I have a connective tissue disorder - an inherited one - though they aren't sure which collagen is at fault - 1,3, 5, or 6.. Do many of you have 'neck' issues too? Very curious why our muscles fatigue so easily - causing increased tone, spasms, pain etc... and decreased function too.

Two hours into a dental procedure - sitting in his chair while he "a new guy" tried to do his best ~ under the semi-watchful eye of the regular dentest.... I began to shake.... and it got worse and worse and worse ... two hours with your mouth wide open is really tiring and trying - but totally bearable... Evidently though my body thought other wise. I almost shook out of the dental chair... They were forcing me to drink juice and it did nothing ... so they called an ambulance and had to go to an ER -- and was admitted for observation over night. Nothing conclusive ... but I just guessed it was all the lidocaine shots I got - sometimes I need a few extra.... Or like some kind of freaky panic or anxiety attack - though I felt little to no anxiousness ... in fact I was bored to tears while the new guy was taking so flipping long. It was embarrasing to say the least and kinda freaky.... I do have a connective tissue disorder -- who knows how that factored into it. Hope you do well and have a great holiday season...

I have no idea what this feeling is about -- but I have that also ... I think as a rule if I am less active than the 'push myself' and take walks etc. when it's the last thing in the world I want to do --- My legs and core feel their weakest and heaviest. I kinda noticed if I push myself regardless of pain and feeling super heavy and weighted -- and distract myself in the process ... I have a big 'crash' ... with aches and pain for a short while after the exercise -- but looking at the process longitudinally through the week - I have less of that heavy feeling in general. And it seems to take forever to get that feeling gone and build back up....to where I function pretty well again. So what I've learned is to try to stay as active as possible - I don't understand it at all == both 'ways' aren't really fun ... skipping the activity seems the only option ... but I get that heavy feeling worse... When I do the activity I surely pay for it... but as a rule that heaviness seems to be less..which is good. So bizarre... & of course as sure as anything - once I think I've figured it out - something else weird shows up lol... Hope you feel better soon!

For me -- it was a combination of Bystolic and Clonidine -- that in the first three or so days - I was widely shifting and changing.... So while I dipped to 79/53 & did the obligatory call to the nurse while holding my diuretic -- I found by morning I was high again. So I kept up with the doses as ordered and just chukked the diuretic with the dr's blessing. Well it's now a couple weeks later and again I am running high most all the time.... My usual is to be high in the morning, higher yet with standing ... yet 100/60 or so at bedtime. Sometimes it takes some time to adjust things or for your body to adjust I should say ... well at least in my case .. I have a great doc who follows all these weird vitals with me -- not many are up for the job LOL... So where I swore I could never take those meds because I felt horrid and dipped so low - I'm now looking at taking two of the Clonidine a day - in additon to Bystolic! None of it makes much sense to me - aside from maybe with my mild sleep apnea - the apneic spells perhaps could be contributing to a high morning pressure. I really didn't tolerate c-pap - have to return the machine this week. Hang in there.... you are taking it slow and that sounds very good~

Hi Sue... I'm not sure which diagnostic centers offer the equipment that can do the upright MRI's ... sorry I'm no help there (although maybe Dr. Hendersons office staff could give suggestions?)... But that being said -- not all of the EDS neck issues are truly cranial instability - but can also be cervical neck instability - meaning the relationship of the neck vertebrae to one another - maybe with the head in right relationship with the neck. I think maybe that's what I'm facing.... or something like that. In that case the positions of extension and or flexion -- with the neck bones as they are -- might compress the spinal cord causing neurological issues. This can be a test that most all diagnostic centers would offer - the CT Scan of the cervical neck in extension and flexion. That is fascinating the book you mentioned -- I don't yet understand the pathophysiology of this symptom -- But only twice in my life did I see a direct relationship with neck manipulation and big time nausea. First time was when I allowed a chiropractic clinician mess with my neck - with her promising she knew a lot about EDS and wouldn't do anything that could or would compromise my health. Well whatever she did........... Had me leave walking to the check out desk.... and suddenly get very nauseated and faint. I couldn't even check out - had to sit in the waiting room. It was a lousy clinic - any other place I'm certain would have called the doctor over to check me over before I attempted the drive home. The next time was immediately after my extension flexion CT Scan. I was feeling just awful after that exam and had to go to a restaurant and eat before I drove back to the hotel.........I fully believe there is a connection there ... yuck - makes me sick just thinking about it. Eating something salty and the distration of a yummy Baltimore crabcake finally brought me relief and I began to feel human again lol... Not sure where you live - but I wonder if the office staff of Dr. Henderson could/would help out people that stumbled upon McKenzies article wondering where they too could obtain similar diagnostics for similar issues.... Also the EDNF website has a directory of physicians state by state that know about hypermobility things.... And while maybe while you haven't the dx of EDS ... you sure could utilize all phone numbers and office staff etc... of any doctor to narrow down who might help you get the studies that make sense to you. It's crazy trying to figure it all out - when you are stressed and not feeling well etc... But you don't know unless you put yourself out there and try knocking on a few doors.... Any clinic that deals with Chiari Malformation and Chiari issues perhaps could lead you to a doctor and a center that offered the tests that go along with that diagnosis.... Don't think I have that Chiari thingy - but somethings going on.... The scariest is the lack of my ability to remember things short term ... my memory is shot... dunno why that is though.... I have so many other issues - the whole memory thing is repeatedly put on a back burner - yet I keep mentioning it with each doc I see. Tonight I cooked at the restaurant - and for the life of me I couldn't remember which plates each entree went on. Almost like I had a severe intellectual deficit... it was so embarrasing... Heaven help us all! Good Luck with your seeking what you deserve - the best care to get you feeling your best - and ASAP :-)

I don't have answers - but in general would say nothing ever stays the same -- so by just that alone I'd venture to stay positive in that things will improve in time... in fact some noted physicians say that most of the time --- things do improve most assuredly over time. But mostly wanted to share that I had an MRI of the cervical neck a year or so ago....when I got the films and do a home read in front of a living room lamp -- I was like - 'wow that doesn't look good'.... To me it looked like the spinal cord was being smushed a bit by the vertebrae and some discs... Anyway I went to an orthopedic doctor who only specializes in spines -- and he said, "that's a normal 52 year old neck" .... he said this as he looked at the MRI on the view box. Fast forward to a visit with a neurosurgeon this week. He pulls the film up on his computer.... he looks at the image I saw intently and says after a second or two... "well there's your problem - it's quite obvious" -- ??? Then goes on to explain a neck deformity, a congenital issue also, the relationship of my symptom set to the MRI findings.... which in the end add up to an unstable cervical neck with myelopathy etc... I only share this to say that if you get a gut feeling that your MRI in viewing it looks anything but normal.... or even if you don't see it - but feel that the docs are missing something .... to keep pressing for answers. Some docs I've learned like to shove complex cases under the rug --- and it's horrible to experience this. But persistance does often pay off in the end. So hopefully you can obtain all your records and copies on disc of your studies to take with you to a different physician for a second opinion if you feel it appropriate in your case....

Hello Anna - Hi Reen :-) http://www.dchweb.org/resources/documents/Community%20Newsletters/Live%20Well%20Fall%202009.PDF The above link I provide -- if you haven't already read her story -- this is about MacKenzie (? sp) a teen who had plenty of these neuro/hypermobility issues ~ the article is about her journey with her mom to find answers -- what they did when they found the answers and how she's doing now.... She has a blog also on the internet. As you have lovely kids Anna maybe you'd like to read it... Long story short - the amazing care and clinical assesments provided by Dr. Clair Francomano -- geneticist and then Dr. Fraser Henderson -- neurosurgeon ... lead this young woman to begin her journey to healing -- and a return to dance - one of her passions. So there is growing interest among scholars in these kinds of cases -- but it's slow in coming it seems... I'm no expert on this stuff - but my own internet research shows these two docs to be among the front runners in clarity of understanding and also compassion for people with this symptom set... Dr. Henderson I believe does have pediatric surgery experience ... gosh I read his curriculum vitae on-line and it was 23 pages long.... what an impressive career. I guess my knee jerk response is to say no to surgery in my case -- believing that hypermobile fusions would seem to me - to not be stable that long.... but again I'm no expert and frankly pretty anxious about how life looks right now with all these issues. I end up saying - oh heck I'm old and maybe just fighting old age.... It was these two docs whom I flew out to see the past couple of days....I'm home now and trying to let it all sink in. I guess because of time constraints - my last two tests administered (ct scans) weren't read before I flew home -- so maybe I'll feel differently once I get a handle on the specifics of all the "why's" -- and hopefully speak with Dr. H on the phone... I LOVED the Abbot and Costello -- I LOVE to laugh and that comment was great.... I guess I've come to see that most of the physicians in the world are clueless about these issues -- and in fact a lot of the ones that are savvy to it all -- come to it because they love to learn....they are scholars and truly wish they had more colleagues that would take interest in these things. In the world of academia -- if a university is not interested -- it can be hard for the front-lines or visionary thinkers....to get support and a dynamic group of like interest docs to confer with..... So it remains perhaps up to the goodness of patients that wish to help the cause through presentations, lectures, books, websites -- to spread the word - spread the news -- that help is available -- and to also help people to identify in others what they may be experiencing themeselves....It's a rough road for those with 'rare' or 'rare-ish' maladies! Have a great WEEKEND .... Christmas is just around the corner.... hard to believe!

Gosh like so many of you I find I have the triad of dysautonomia like symptoms, EDS, and now a bunch of neck issues. I guess I have swan neck deformity of the cervical spine, a narrower than most congenital spinal canal, some neck cord compression issues, spinal fluid extending further down the cord than most, severe bilat foreaminal stenosis....you get the picture- a messed up neck with the recommendation of plates and screws and other fix it toys on multiple levels... frankly I say NO! It's better to have an unstable neck than endure yet another surgery and have an unstable person! I'd go nuts if I had to go through another surgery.... I have to say NO. I doubt I'd survive it. So I'm just waiting to see if this is a life or death thing or not -- ext/flex CT scan will be read tomorrow. I think I'll change my name from Nowwhat! to something else -- because with this name I've just added a heap more of problems! Neck instability....whatever! If my new name is whatever! that could be asking for trouble too.... Help me get a new moniker if you could be so kind - one that will bring health and happiness in the New Year LOL!

I don't have any answers but I will say that someone - anyone that's knowledgeable that works in that office should be willing to help answer your questions -- or if not that -- then arrange for an in person or telephone call consult with Dr. H himself. It's your precious life that you are entrusting him to care for - so good communication is crucial to a good working relationship. As he is a very busy surgeon you might ask the staff what the best way is -- or what is the doc's preferred way to help a patient gain clarity as to a sticky situation. If he is not ready to say what's going on because he simply doesn't know -- that's fine - he should say that -- but beyond that .... if you need clarity on the basics -- it should be provided to you in conversation or written material.... imho... Best wishes for a quick and accurate resolution to this problem! Keep us updated!

Yes -- Best wishes for a fruitful visit -- that will ultimately bring you to better wellness! I know you've been working toward this for awhile - good for you!

Just want to add I'm sorry about having to deal with that mean doc....wish someone would report him to the medical board in hopes he'd be on a performance review for a bit - likely fail it and have to leave - oh my how awful would that be....grrrr.... I have met two similar lately ... it almost could be on a sitcom the ego's I've run into... First you see their faces plastered all over town in advertising and on TV. Then you go to their office and they themselves have their faces plastered on the walls of the waiting room. They begin with, 'well the ONLY reason I'm seeing you is....' Like they are some freakin' gift to the universe & I'm to grovel in Thanksgiving? They tend to BELLOW instead of talk. They are easily easily threatened by questioning. They have barbie-doll nurses in heels and enough make-up to black top a playground two times over. Click, click, click oh no here she comes again.... The staff are 'trained' to speak as if the doctor is the world's only answer to your problem. Yet if any one of them had the malady themselves and were treated in such rudeness they'd run screaming. Ah yes.... They are coast to coast I'm afraid LOL & I'm sorry you endured this not once - but twice. I've got to love the occasional sympathetic resident who is made to endure this day in and day out during his rotation following the dude like a puppy...they speak with quiet desperation as they get your story before the 'big wig' comes through the door ~ hoping they "get it right". My last one shoveled around for a marker for the doc to draw me a picture - the doc already had his own pen and shoves the residents hand aside saying, "my pen is fine!" --- Heaven help us. Sorry about the high b/p -- maybe your catecholamines rise with standing? I don't really know. I'm having a baseline of high with shifts each way. 153/112 to 79/51 all in 24 hours. They say I'm to drink 100 oz. of water a day - I used to have a coffee or two and a diet coke a day. It's so challenging -- but why so high I don't know. I'm on catapres and bystolic and catapres will likely be increased to twice a day soon. I was low till 10 years ago -- in a high stress environment - gained weight and have been labile ever since. But my baseline without meds is definitely high now. Hang in there -- hope your primary and everyone you see treats you well and with kindness and good, good care to help you feel better soon and normalize your b/p...

I'm happy you got someone to look at that finger - and that they ordered labs and such.... Rheumatology sounds like an excellent idea - even if the internist gets the answers he's looking for -- for some reason it seems rheumie's do really well with unusual health issues and are never shy in ordering a plethora of tests to nail things down. I've seen four of them since my 30's and 3 out of 4 were truly exceptional people...hope if you go the same occurs for you in your visit. Thanks for the link from yet another EDS website who rightly teaches about vascular EDS and what to look for....I do think there's a fair amount of crossover in signs/symptoms and it is helpful to get a specialist in connective tissue disorders to get dx correct. I know Dr. Lavallee is in South Bend, Dr. Francomano in Baltimore and Dr. Tinkle's in Cincinnati....Even among them - sometimes it helps to see more than one - as some deal more with kids and others more with adults. Some others in the US deal with other types more than EDS types and on it goes. Sounds like you do have a good plan in place and that it's just a matter of time before you get some clarity as to the nature and cause of this finger thing and the clots etc.... I've been on Coumadin 4 times in the past and didn't have any issues with it for surgeries....but maybe if they find out the cause for sure you won't even have to have it. Only the best to you!

It's crazy all the stuff that they used to think was so harmless and/or a part of growing up ... like roseola (hv6), mono (ebv), mycoplasma (it's out there for sure), varicella Are all being examined intently as to their relationship with chronic fatigue, fibromyalgia and other chronic illness suffered by many... Delighted you have someone thinking intelligently and applying knowledge to real life situations through continued education......someone who isn't afraid or too proud to ask for help from others to tackle a complex problem..........That's huge! Hope you feel better soon.

I am curious as to the consults you've received as regards heritable diseases of connective tissue.......Were the consults with those that specialize in these alone as part of a genetics practice? Or were they EDS specialists? I had never heard before about hands looking a certain way with vascular eds like aged - in fact some EDS peoples skin looks more supple and soft and youthful compared to other non-EDS folks ~ but it is kind of alarming to read your shared family history with ruptures of hollow organs like arteries.... which can be the story with vascular eds... I know you would absolutely hope to get someone to accurately diagnose .... either the underlying disorder (did a doctor say you had a connective tissue disorder like scleroderma & agree to follow you so you have a doctor to treat?) Has neuro been involved as you have lost sensation to your finger ~ I guess I hope you have copies of all your medical records and tests in a binder because it sounds like a complicated case - with symptoms that are changing... Would you be bruising easily because of the blood thinners? I just wish I guess that someone would be there for you when stuff like this happens - someone to have a good working relationship with that knows exactly what you have and what treatment schemes would/will work best... I hope you feel better soon (& I hope you get a nice doctor that can follow you through all of this - hospitals aren't fun - but they were worried about you and I think they need to make sure you get good follow up) Feel better

It's weird with EDS - in that for me the only clue that something wasn't right began with a global or body-wide pain scenario at age 51. Where I had these 2 knee surgeries to propel me into the land of the physically functional people..........the opposite happened. Two years prior I had hip replacements too. So firstly pain not only in my legs but feet, hands, elbows, shoulders, back, headaches -- just real hurting pain - where I didn't have that before the surgeries ... so as I was trying to find answers - I then began dropping things, getting numbness and tingling in my arms and lots of weakness in my legs....so they thought MS or Myasthenia Gravis - but all tests came back normal. Well normal labs - xrays, scans, mri's - showed a lot of osteoarthritis, some buckling of ligaments, degenerative disk disease, foraminal stenosis. My new knees weren't doing all that great either - the right one with the kneecap shifting laterally. Then fatigue knocked me over - where I would have to lie down flat to relieve the fatigue after being up for a couple of hours in a day. This was unusual for me. Then palpitations, widely labile blood pressure, baseline heart rate of 100 to go up with activity. What I guessed to be dysautonomia issues (that occur frequently with EDS) Then just plain muscle weakness - hard to get out of chairs, to lift anything and a lot of 'itis' things - tendonitis, bursitis, where I had to get shots of cortisone. And as mentioned this new onset of incredible stiffness ~ almost a Parkinson's type of gait in the morning once walking - totally freaked me out. A rheumatologist put this together as Hypermobility Syndrome - when she found my Beighton Score of 6...and reviewed my systems throughout my life of varicose veins, hernias, GERD, diverticulosis, SVT, feet issues, dental issues, severe arthritis - things impacted by underlying collagen issues. That was confirmed by EDS specialists - but I'll check out some other things one more time with EDS doctors. So while it's inherited and I've had it my whole life - things like dental anesthetic working poorly on me - lots of things add up to EDS - but I didn't notice because I had never heard of it - and I never did frank dislocations of my joints (many do). My skin is soft and hyperextensible - but you would never really see it as that much different than most peoples unless you were looking for it or a HDCT doc was looking at it. My scars are just about normal - where some EDS'ers have wide, thin or papery scars. I was always weak though as a kid == never able to do the gym stuff....later I learned that's because your muscles are different - using their energy to stabilize joints - and to help in guiding you in your proprioception 'system' which can be out of whack with EDS. Yet some EDS people are marvelously flexible and seem quite strong to boot. When the hypermobile joints became painful was the official beginning of my 'syndrome' I guess. For some people a pregnancy can usher in the debilitating aspects of this - for others a surgery -- it's odd how some have clear onsets at an early age - and then you get late life diagnosis d/t symptoms like me. Some have the symptoms their whole life - but don't put it together because it's rare - and doctors are still not yet educated to check for hypermobility when someone has chronic pain issues with an unknown cause. Have a good night :-)

I don't have much to offer in terms of advice but I just want you to know that I'm sorry it's taken so long to have the docs get to the bottom of this for you. It's true that docs are an intelligent lot as a rule - but they gain much by 'on the job' learning....much more than they likely care to admit - especially when it comes to rare disorders. It will be frustrating for sure - but if you take a deep breathe of patience - you could be the one they learn quite a lot from. They can't know everything -- and sadly it doesn't work that they have experience in these rare things so know what to do very often. So hopefully though -- as they begin to tune into things such as POTS -- you can be learning much on your own -- from books and from here. Dr. Tinkle has a good book out called The Joint Hypermobility Handbook - it's excellent because each chapter tells about all the body systems and how they can be effected by this Syndrome (hypermobility syndrome or EDS/HM). He even talks about how to talk with your doctor, disability issues, raising kids with it, or raising kids when you have it. I'd just heed your doc who says don't worry - something's wrong. If that medical center doesn't find it - someone else will. Frank V-Tach is not anything I've heard of being "let alone" - ventricular dysrhythmias can be deadly. SVT not such a big deal - and can be treated by a few options. So hang in there & be persistent. Sounds like you are on the right path with doctors paying attention....if it isn't this round of testing that has you with matched with a knowledgeable clinician - then press on till you find one who knows what they are dealing with. Good luck!

I've been so frustrated with these concepts........ I've had doctors document I'm a 4/5 or a 5/5 strength and look at me like it's all in my head when I say I'm weak, have balance issues, etc.... Then I have ortho surgeons who say "your quads are weak - you need to stengthen them" - I'm like??? My right knee buckles but not my left - so I'm weak in just one leg? Why is that? I've had a PT explain it as - you do have 4/5 - but the thing is your response is slow. So when I tighten a muscle it's super fast -- when you do - there's a time lag - you do it -- but you have no "Power"..... ??? Then I'm told it's not neuro -- I'm strong or else how could I have managed to walk 5 miles one day =-> only to have someone says - just because you can walk doesn't mean you are strong. I'm told my knee cap shifts outward laterally because of weak inner quads. I nearly fell today losing my balance, my right knee is beginning to lock up, the left buckled for the first time ever yesterday. An emg says chronic L5 S1 radiculopathy - yet no one tells me which of my symptoms would fit that description. Or why I have it. I had a surgeon tell me recently if I have my knee revised I would have a tougher time than the first because I was on the walker for seven months - a revision would have me worse off. Why? Because I am not strong. So yes this is frustrating - an EDS doc says you are weak because your muscles work too hard to stabilize joints. Yet you see EDS people with super-strength doing near impossible feats like gymnasts... It's enough to drive you to drink........but in the end if I did that -- I'd just gain weight .... Hmmmm.... Might be tempting just the same -- then I could at least feel strong for a short while -- lifting that wine glass like Mighty Mouse...... just kidding!

Since my entry into the world of EDS and orthostatic issues two years ago after bilat. knee replacements I have as my worst symptom -- severe stiffness. It is at its worst when I first open my eyes after sleeping at night -- and also anytime I'm in any one position for any time and then stop to sit or change positions. In the morning it takes well over an hour to work out the stiffness. I sometimes manually unfold my hands and arms etc. to get moving. My feet don't seem to move but in little steps just inching alone holding walls and furniture. If I stand to cook for a time such as at work -- I just push to the end of the shift without a rest break - because were I to do that - I would need help getting out of the chair - or if no help was available - I'd likely manage but it would be so so embarrasing to be seen with that severe of mobility issues -- so no breaks for me - though I know I need them. I asked an EDS doc about it and he said it was called "gelling" - I tell him after working on my feet - getting in the car to drive home - once home I can hardly make it to my door because of the stiffness. He said EDS can cause some of that - but especially arthritis. So I googled it and find it's mostly rheumatoid arthritis that has this going on. OA too - but the stiffness with OA they say stops in a few minutes. I don't have RA. So if I have replaced my knees and hips - why would I still "gel" ? I don't know. Does anybody else do this? I am not red nor swollen at all - just can't move hardly at all. Is it tissue fluid? I don't know much about this other than it is making life harder and harder and I fear I'll be in a wheelchair before long... so scary. I picture jello and how it solidifies and liquifies - Anyone know if this is part of pots or those mast cell things or eds in it's origin? It is miserable and disabling - I wish I could know what to do to make it go away! Thanks

Mine is off the wall as well. I was tried on 2.5mg of Bystolic - then a week ago we added clonidine. Well first couple of days were okay ... then I got the ever familiar widely labile readings. Wed. nite it was 79/51 and then in the morning it was 140/100. I took meds and by nite it was 99/66. This morning 153/111. Took the meds and now I'm about normal. The nurse called to tell me to cancel and stop the clonidine because of how low I was getting - but when I had those morning highs again - I told her I'll just stay on what I'm taking. I have these widely varying b/p's for about 2 years that I know of. I used to be just high - with meds to keep it normal. Not sure what's going on - other than hydration and salt status. Too much salt (as in Turkey dinner maybe?) I run higher -- too little fluid in a day I run really low. But not sure if it's cause and effect or me just wishing to heck I understood the mechanism of action when your body does this. I'm bothered with a dry hacky cough without being sick for a week now too - but sounds like it can't me med related - though it feels like the same cough you get with ACE inhibitors. Maybe it's the quality of the air in AZ? Allergies (even though I'm not an allergy person?) Maybe just coincidence the cough - but it sure is annoying. So take heart - hopefully your crazy readings won't or don't impact your health negatively - I know I feel tired whether high or low -- it's all the same...

I would just guess that you may have an allergy to those chestnuts now -- dunno why though. Anytime you get swelling of your lips, mouth, tongue, throat in response to eating any food - it would be a good idea to add it to your list of things not to eat. I would take 25 to 50mg of Benadryl per the package directions every 6 hours or whatever the box directs you to do - one dose beyond when your symptoms stop...and then stop taking it. If you take the Benadryl and yet the symptoms worsen I would go to the emergency room or call 911. In the ER they can give you epi, steriods, IV tagamet or whatever the doctor orders and monitor you as they try to reverse the reaction. Have no idea why this would happen now though.

I get to meet with her in about ten days....I'm really looking forward to learning from her what I can for sure! I am just feeling overwhelmed with knowing "half" the story with my symptoms - hoping she can fill in at least a few gaps....

I read that celiac disease should be considered in people with low copper levels...even without gi problems.... Copper deficiency myeloneuropathy can cause gait disturbances... Excess zinc ingestion can cause a low copper level as can malabsorption issues....It seems if you google this topic there's quite a bit you can learn - though I didn't yet find a link to connective tissue problems - it's probably there somewhere!