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July 6, 2012 at 7:17 am in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #2544Give My Daughter the Shot!Participant
I can’t effectively sleep on my back because what’s the point of sleeping anyway – it’s not like I’m going to feel rested – Just Kidding! The reason I struggle to sleep on my back at all is because of ‘my tail’ (a massive knot of bones at the base of my spine which prevents me from lying flat). I am not sure when the last time I slept on my back was.
Now, regarding ‘FREEZE DREAMS’… I’d never been to the doctor for my ‘freeze dreams’ since they occurred during my teenage years and into my twenties (maybe up until 30 but not sure about that). While they were terrifying and I was certainly completely paralyzed, I never considered seeking medical assistance. I did, however, inquire of friends and they had feeble ideas or no ideas at all. Not a huge deal since they didn’t happen often. Believe me, a healthy person (which was my identity) is not going to give much credence to a bad dream. I am not sure how often I slept on my back at this point and it may not have been very much. I don’t remember noticing ‘my tail’ until after I was a teenager or at least late teens. If anything it has become more bothersome with time, ‘my tail’ that is.
During these ‘freeze dreams’ I once dreamed of Freddy Krueger hand (complete with blades) coming down toward my forehead but couldn’t wake myself no matter how desperately I tried. I was completely paralyzed in every way. I remember trying desperately to move and it was weird because I was also awake. Anyway, you can imagine why I might have overlooked the paralysis portion of this as a teenager and been more impacted by the Freddy Krueger portion.
Other times that it happened weren’t necessarily nightmares, however, I always thought of them as a sort of nightmare since the abovementioned is the first one that I remember having and I always remembered it so vividly. The other times I recall desperately willing any part of me, (specifically my pinky which was so close that it was practially already touching my partner) to move just a teeny teeny bit and make contact with my partner so that I could be ‘wakened’. I was never able to establish contact. Absolutely no vocals and, while struggling with such desperation, don’t even think I was able to breathe heavily or squeak or anything. I wanted to do anything to attract attention to my mere existence and remember thinking that if I could be touched, I might ‘wake’. I was just ‘suspended’ and ‘invisible’ and could do nothing about it. I may have ‘awakened’/snapped out of it/come to with an abrupt gasp but am not positive. I was just so darn grateful to be out of it. I still thought of this experience as a ‘freeze dream’. I’ve never heard of it before nor has anyone else. I am not sure if this is the same as this post.
I was actually awake or more than subconsciously aware of what was happening. Maybe trapped of suspended in some state of being type feeling?? I was completely paralyzed and aware that I was desperate to be rescued/’awakened’ from my state of being (which I labeled as a ‘freeze dream’). No couldn’t speak, or I would have. Could not make a noise or a move whatsoever – not even the slightest – even though I TRIED LIKE MAD!!!
I haven’t read this whole post but will review to see if y’all have been having ‘freeze dreams’ too. I’ve never heard of anyone having any idea what this is. It happened other times but I don’t remember them so vividly. It didn’t happen ‘all the time’ or anything. OH, the times that I mention and recall were definitely on my back!! Trapped and paralyzed while on my back!!
Give My Daughter the Shot!ParticipantI can’t bend properly due to joint problems and when I lean (began trying that as an alternative) it sends me into a wicked frenzy of debilitating symptoms. Awhile ago, I finally became so frustrated/devastated by that that I hysterically inquired of a reliable source (not Dr. Diana) why on earth my arms and wrists wouldn’t hold a tissue and when I would drop my ‘snot rag’, I couldn’t even pick it up. Oh my gosh, can’t even pick up own ‘snot rag’. Far cry from my identity -that one. POTS was mentioned to me again which returned me to Diana. She’d mentioned it to me awhile ago and I was too overwhelmed to accept an additional ‘issue’ at the time. I sorta ended up telling myself, “Yep, I spend my days on the pot and that is enough for me”. I withdrew myself from the idea of POTS. Well, after this alternate source AGAIN mentioned POTS, I had the umph and/or courage to come back to Dr. Diana and search for answers so that I can advocate for myself and my children. On a better day, I try to learn -try to make some sense of my body’s horrible and illogical betrayal of the very strong mental willpower that I’ve always enjoyed. My ‘will’ had always given me security, a sense of safety, independence, and a ‘can do’ identity! I’d always thought of myself as the ant that CAN move the rubber tree plant and my waif-like frame would always push forward. I would, sometimes, even sing the song, “Anyone knows an ant can’t move a rubber tree plant” but I would – I’d move it! Sheer willpower! Mind over matter! That began deteriorating about 10 years ago, in hindsight. I never let it bother me, mind you, because, after all, I’m a chick and a waif-like one at that, and it’s fine if God didn’t make me ‘sporty’.
Tethered cord was mentioned to me as well but I don’t remember if it was told to me as something to look into with regards to the nightmares that leaning causes me. I know that I feel as though there is a ‘too short’ rope in my spine. When I lean my head or move it (not every time so severe that it ‘breaks through’ as a layer above all of my other nightmare symptoms) it has a dreadful tugging on my lower spine/knot of bones/’my tail’. And visa versa.
I am, personally, positive that I am contending with dysautonomia. I am, however, not positive that I meet the text book definition of POTS – not saying that there’s not a great chance that I do but I wouldn’t swear to being exact same precision reaction each and every time I stand up. So crazy and all over the board.
Tethered cord, I haven’t really looked at as of now. It usually takes me awhile to even consider attempts at mentally ‘digesting’ possibilities. PLUS, I feel horrid every day (which doesn’t help either).
I will say that when I first started examining Dr. Diana’s site (when I returned to her after a several month sabatical of denial), I was only accepting of EDS, fibromyalgia and the chronic fatigue. I only had interest in figuring those out. I also was desperate for a place to ‘vent’ my questions about my terrible health after the doctors has been so abusive. Plus, my genetic doctor recommended support group (which I was involved in a diff one). Anyway, I am learning (at least for myself) that the reason Dr. Diana mentions all of the health topics is because they are COMORBID! I hadn’t considered that – hadn’t wanted to or been willing to. I’m sure I’m correct about this. She is the one studying and she’s the one working with the cutting edge specialists. I’m sure there is a reason she listed the conditions that she did. I will have to check into them bit by bit (as I am mentally and/or physically able).
I’m currently wondering about Chiari. Really not educated but think I should begin to look at it. Does it have any connection to tethered cord? I’m literally completely ignorant and just trying to psyche myself up enough to have the courage to take a peek. My legs have been a nightmare and without circulation (or so I think) – freezing and painful – for days now. My lower back is an absolute nightmare in ‘my tail’ region. Two days fighting a migraine – yeah, was successful at keeping it to only a 2 day headache. My stomach is a disaster too!
I hope and pray that all of Dr. Diana’s research ties this together and makes sense of it so that I can present to my doctors for proper treatment. God willing, at least they will stop MIStreating me!
I recommend checking into all of Dr. Diana’s research. I think CCSVI has to do with bending. I sorta get it but it is psychologically painful to have to learn about having something so ‘rough’. When I asked a non-PCP doctor she said that it was very technical. I’ve taken a break from learning about this but think it may be applicable regarding bending. You may be able to absorb more than I and might check this out. Also, there has been tons of posting with regards to this and you may wish to read the other posts. It seems that nobody can bend.
Bottom line, check into what Dr. Diana says and answers may be ‘right under your nose’. I plan to continue my understanding as I am able. Then I have to figure out how to present to doctor.
๐July 3, 2012 at 8:21 pm in reply to: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. #2531Give My Daughter the Shot!ParticipantHi Dr. Diana,
I can’t believe you just said that. I can’t tell you how many times I’ve cried to friends saying, “How the heck am I supposed to list 157 symptoms!”. I never counted, not by a longshot. I just cannot believe that you said 150 when, for some strange reason, I chose the number 157 and have used it more than once when expressing dismay. Anyway…
God bless you and I can’t wait to see your work published. I think I tried to get too involved over the last couple of days and there is something very wrong with my legs now. I think it’s circulation – and it feels like something is dreadfully wrong with my ‘tail’ (large mass of bones at base of spine). It’s been going on for the past few days now. I’ve been using heating pad but can’t get any warmth/circulation in my purplish legs (mostly from knee and below but the tops are pretty awful too). Then I ‘hit’ the Brookstone foot massager hoping to improve blood flow, a couple of times my legs began to hurt a lot – different hurt – and I noticed that the veins were no longer retracted but distended like worms, it burned, my eyes bothered me a lot, and reverted back to the former state of coldness. My 7 week old hypergranulated wound on my foot also weeps with more circulation. Heart rate changing up, yadda yadda.
The funny thing, is that the cold bottom portion of my body doesn’t match the normal temperature of the top – WITH THE EXCEPTION OF PERSPIRATION UNDER MY ARMS! What the heck!!! Really!! That’s 3 different, unsynchronized regions of my body – and that’s only for temperature!
My legs and back are awful so I’m going to refrain from writing. Sad, because the writing is theraputic for me. I’m not sure what else I’ve ‘done wrong’ this time so the only change is to stay away from typing? off computer? I always wonder what the heck I did to perpetuate this or that. Do I need to learn a new way to sit, stand, breathe! For crying out loud. This is just not good. Like a bafoon, I’ve gone out in HOT weather KNOWING that my heart would GO WILD – hoping that would increase my circulation! No, not a suicide mission – for less than 5 minutes – did it 3 times though. I’m like a clown -trying to restore circulation in my legs. Anyway, I hope I figure it out because I don’t have such a good feeling about it or maybe the next ‘layer of nightmare’ will come with such force that it attracts my attention away. It’s really bad right now though!!
You know, I did go through a time when I felt as though I might have AIDs, though knowing that there was no way I could’ve acquired it. Ever seen the movie, ‘And The Band Played On’? That’s what the my thought was based on. Multitudes of weird, impossible, horrible symptoms. Now, I think of the commercial where it says that “2 pills per day cost .40” and dream of being able to manage myself that way. Sick as it sounds, I have a sneakin suspicion that it might actually be much easier to have AIDs! Isn’t that horrible that I would think that? or is it?
Give My Daughter the Shot!ParticipantI thought of another thing. Over 20 years ago, I had a good PA (or NP) tell me to listen to my body and that my body was smart. That has stuck with me over the years in a big way. I was very confused by what I was asking her about (at the time) and couldn’t understand why I was starving to death while breastfeeding – MORE voraciously hungry than the final weeks of pregnancy?? Didn’t make sense and I wondered what the deal was. I was shocked when she told me that it takes so much work for the human body to manufacture breastmilk. She said that there are also body signals involved in true cravings (not just an excuse to gorge and calling it a craving). She said that pain meant something too and that ‘your body is trying to tell you something’. I’ve never forgotten what she told me and always honored her words and followed that philosophy of listening to my body. Harmony, synchronicity, and a sense of well being were the result that I always felt that I’d achieved in doing this. Rebecca was her name and she was awesome!
Fast forward to now…. What a far cry! Over these past years I’ve had to be mentally forcible with an unacceptably and senselessly uncooperative body in an attempt to complete the most basic of tasks. QUITE A FEW OF WHICH, INCLUDING LEANING, BRING ON A PLETHORA OF, IMMEDIATE AND DREADFUL, DISABLING SYMPTOMS. Could NOT make ANY sense of what my body was doing or refusing to do! WHEN I BEGGED FOR MEDICAL HELP, THE DOCTORS PATHOLOGIZED ME IN A VAST MULTITUDE OF CRUEL WAYS! This perpetuated my dischord with my body and may have even been the start of my conflict between my mental will (which is/was/always has been very strong) and my physical deficiencies/disobedience of my own will. Over the years of doctor’s humiliating, gaslighting, doubting, blatantly disbelieving, rolling eyes at, challenging me – and I’m sure more. Refusing diagnostics, refusing referrals, refusing help, etc. ANYHOW, THE PAST YEAR OR TWO I’VE BEEN IN DESPAIR AND SAYING THAT I CAN NO LONGER LISTEN TO MY BODY. True enough, my brain and body are WAY outa sync. I am just now realizing though… one of the main reasons that I cannot listen to my body is because THERE IS NO POINT TO EVEN PAYING ATTENTION – NO DOCTOR WILL LISTEN TO ME! Why would I listen to my body, go for medical help and endure the ensuing abuse by admitting to the multitude of impossible symptoms that I am sure to be mistreated for speaking of. IT’S NOT ALL MY FAULT HERE – THE DOCTORS AREN’T FOSTERING AN ATMOSPHERE WHERE I AM ABLE TO BE ATTENTIVE TO MY BODY! I’d better ‘shut up about it’ lest they get the social worker, “Sit right here while I get the social worker” after making me wait for over 3 hours (my last MD disappeared and this was an unexpected replacement that I found out about when I got there) to find my records (while I had a copy of with me). Yeah, I needed something – to get the heck outa there – 3 hours is too much for me even if it is just sitting there.
I’m stuck blindly researching like a maniac for all of these horrible and alarming symptoms and diagnoses that I experience daily – then I have nobody to tell (for the most part). It’s hurting me a LOT to be without a doctor of my own who wants my best interest and to nurture my health. I’ve always taken very good care of myself, medically among other ways. I’ve always had a lot of value for humanity (myself included) and always thought that this was just an expected human trait. I know now that not all people are the same and not all people are well-meaning. It’s tough to even distinguish the character of many in the medical field when so much is so far askew and causing so many problems. I can’t figure out who to even try to teach versus who to avoid altogether because I am under so much duress with regards to my health.
Just an epiphany, basically, that the primary reason I cannot listen to my body is that doctors act as though I’m a liar (or WORSE) when I convey the info. Secondarily, I am frustrated by my own lack of function. I actually NEED to conserve scraps of energy and this internal ‘battle’ does not help. I know I need to accept and sync – as discouraging as it is to lower my physical expectations of myself to the necessary level. Fighting, forcing, deluding, trying to act like it’s no big deal, spending days failing at trying to think about something else – just isn’t working, never has. I’m going to relay this info in counseling where the importance of my acceptance of my health is being explained to me over and over again. It’s not so much me that is non-compliant. Just sayin…
I need help and a medically inclined brain to participate in my comprehending, problem solving, and maintaining with regards to my health. I need to figure out which body system is the worst offender and try to salvage what I can. I know this stuff fits together, it’s just a puzzle with itty bitty icky pieces
What about ‘First, do no harm’ – isn’t that a staple in the medical community. I just had an idea, while I’m not a big ‘attorney type of girl’, we do have a family lawyer. I wonder, if I could have a brief (like that’s possible) letter of explanation regarding my condition drafted and request my doctor’s participation in slowing the degeneration process. IS THAT WEIRD??? Stupid idea??? Could we all, attorney or no attorney, have a statement that puts the doctor in a position of some fragment of liability for our care and proper treatment of us??? Again, I do have a heart and if the doctor isn’t interested in something complex, they could have the information/opportunity to turn us/me away versus allowing me to attend useless appointments and treating me like crap?! I know I’m a valuable human being and I’m so sick of having to struggle to recover my self esteem after attending a medical appointment. It’s taking longer and longer to upright myself after a ‘bad appointment’. Meanwhile, I’m feeling worse and worse physically too.
Give My Daughter the Shot!ParticipantHeck, I walked in on the hospital administrator changing my records after I called and confronted her on the negligence of the lab staff making the executive decision to not send away a second specimen for species identification. You have no idea the trouble I went to in getting the second culture taken – after I had to force them to culture the first time. They found curvularia in a non-healing wound a few years ago. For those not familiar, it’s a black mould. If you look it up, you’ll find case studies of a couple of people living for a few days or a week while their brains were eaten away in the hospital. It’s treated with antifungals or at least that’s the least invasive. Once Rx for me, my growing wound did end up healing. Anyway…. You have no idea how weird it was walking in on her changing my records. I’d gotten a copy the Friday before and had the revised version in my hand now that it was Monday. The exchange was unbelievable, literally unbelievable! “Is this what you do when someone has a concern about your hospital”, I said. She said, “Are you saying that there’s something fishy” and I told her that, “I didn’t say that, you did”. Are you kidding! My gosh was my heart racing! Then I said, “I’ll just take these copies and put them with the ones that I picked up on Friday”, “Thank you”, and left. That fool didn’t even know what she was trying to accomplish (by the look of the changes she was making). I felt suspicious when she kept trying to debrief me, then telling me not to worry about it. Then who did you talk to, what did they say, when was that. I knew she was doing something shady so I rushed to the hospital to re-collect my records. She was very surprised to see me. So creepy!
ANYWAY, IT WOULD ALMOST BE NICE TO HAVE SOME SORT OF CLASS ACTION SUIT. NO, NOT BECAUSE WE ARE GREEDY MONEY LOVERS BUT TO RAISE AWARENESS! Seriously! SERIOUSLY! Everyone seems to have some pretty profound issues with being malpracticed, abused, treated negligently. I know it’s probably not appropriate talk and am not a big fan of attorneys. I’m in a position that I have to trailblaze some standards for my affected children. I’m so far behind the 8-ball of being treated like a human being. I don’t mind a doctor not knowing (at least they’re honest) or even not wanting to be bothered with something so complex (I sorta don’t blame them). The problem is that they use trickery and abuse tactics to mask their lack of knowledge. I saw somewhere that one of the worst things a doctor can do to someone with EDS (or similar) is to treat them like it’s all in their head – that does damage!
Hi Barbara, Obamacare will doom us to far worse care than we can imagine. It will take away any incentive for doctors to excel or perform at or above standards. Many US doctors are in private practice (I am now stuck in a clinic). Yes, it is true that better insurance generally affords better care. Is it fair, probably not. BUT without better insurance there would exist little or no ‘better care’. Here’s why. The private practice doctors are working hard to build their practices and if they don’t take proper and respectful care of patients, the patients have the option to go elsewhere. I used to manage dental and surgical offices. When a doctor starts their practice, they sign up with insurances as a participating provider and agree to the fee schedule imposed by that particular insurance company (whatever the gap between their fee for service IE: an office visit is $100 and the allowable amount that they’ve agreed to accept from that particular insurance company
the office has to write off the difference between the two amounts). This is acceptable to the start up doctor because it is in exchange for patient referrals (which will build the practice and give the doctor a chance to market himself with new patients and prove himself competent and worthy of their trust) from the insurance company aka he becomes a participating provider with insurance company and the insured can choose him from their preferred provider list. Marketing. As the practice of a good and competent doctor grows, it will begin to drop the insurance companies that require the largest write offs and maintain contracted participation with the insurance companies that pay more or have a higher allowable fee schedule. Sometimes, they work their way up to where they are so in demand by their patients that they become fee for service and the patients pay in full upon visit and file their own paperwork for personal reimbursement by their insurance company. This would be a doctor like Dr. Paul Cheney, I assume. Until my condition financially broke me, I paid richly for specialized care for the outrageous things that were happening to me – in the name of ‘getting it right the first time’. Obamacare gives no incentive for doctors to excel. Add medmal reform and we are in so much trouble! The future of medical care is further at risk because nobody in their right mind would go to the trouble of medical school and contend with the limitations that the new healthcare regulations would impose onto them. Independent doctors offices will not be operational as too many staff will be required to be government compliant. Also, US doctors require so much schooling and are levied with so many standards that doctors who receive degree in other countries don’t have to meet. US bred doctors have to be able to earn $ at a certain level to justify the expense and investment of their schooling alone whereas this is not the case with migrant doctors. Basically, the new healthcare removes democracy from the healthcare system. I think our doctors already have it hard enough, by far. Our care will suffer greatly! I’m positive of it! Example: http://thechart.blogs.cnn.com/2012/05/28/what-is-elhers-danlos-syndrome/?iref=allsearch , the article written about EDS and the doc who wrote it. No incentive. July 2, 2012 at 11:22 pm in reply to: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. #2523Give My Daughter the Shot!ParticipantThank you! I was asking about that because I believe the definition of dysautonomia suits me to a ‘T’ but am not 100% certain that I meet the specific criteria of POTS every time I stand or that I achieve the specific relief every time I sit back down. I don’t have a doctor helping me with this as of yet and am not comfortable using my heart rate watch to figure out, myself, whether or not I am a perfect fit for POTS. As for dysautonomia, my heart is randomly all over the place without explanation, my body is seriously unable to regulate temperature, it also seems to randomly ‘shut down’ on me in various ways. All sorts of out of sync things have been occurring to me with regards to the basic functions of my body (basic functions that just about everyone takes for granted) for quite awhile now. Yes, I cannot stay upright (as in POTS) but I am not certain that my heart rate is specific in its pattern. Yes, it raises by 30 bpm but it also seems to rise and fall with less predictability than what I understand of POTS. I can feel the blood draining from various parts of my body. I’m lightheaded and nauseous, dizzy, poor balance and forced to sit. I think my heart rate may begin to drop before I’m able to sit (but am not 100% right now). My heart rate also seems to randomly drop sharply while I’m in a seated position, it can rise also for no reason and I sweat when this happens. Very weird, I know. No I am not ‘thinking about something bad’. I can tell a distinct diff between my body doing this on its own and when I am struggling with anxiety. What I experience seems to be a pretty severely dysregulated autonomic nervous system but I hadn’t been completely positive about POTS and felt that my experience might be more random and less predictable. I do have all of the other listed issues that fall under dysautonomia. Still, I wasn’t completely certain about POTS. Is the standard definition of POTS a guarantee with dysautonomia? Can you have one without the other?
July 2, 2012 at 10:19 pm in reply to: Hypothermia? Bloodwork. Doctor cooperation. Diagnostic Proof. Foolproof diagnostics? #2522Give My Daughter the Shot!ParticipantHi Megha,
Thanks for mentioning. I’ve actually noticed that it’s not necessarily quite as benign as I’ve always been led to believe. Believe me, my temperature is among the least of my worries but I do wonder if it has any meaning.
Another weird thing, I’ve noticed people mentioning smelling random things. I’ve had that oddity too. Keep smelling cigarette smoke every now and again. I kept feeling confused about it because it was 100% impossible that there had actually been any cigarette smoke nor could there have been any source of this when this happened. Yeah, I can understand ‘blowing off’ getting a whiff while outside in a residential neighborhood. Maybe the wind could catch it and blow it around – no telling. I was smelling it when it was impossible, like in my home where nobody (smoker included) had been there. I don’t smoke. Impossible. Today I smelled popcorn and it confused the heck out of me. I should probably try to find that post and add my info. It was on here somewhere.
How’s your blood pressure? Do you ever have the feeling that there is no blood in your freezing cold legs and feet when you sit? Can’t help but ask since I haven’t been able to warm my legs from the knee down for the past few days (heater won’t work, heating pad won’t work). I wonder if frozen extremities have much to do with LBT or LBP? I mean it’s so bad. Anyway…. a day in the life….
Give My Daughter the Shot!ParticipantI promise that, God willing, I will ‘bounce back’ from this. I am sure that I will be able to advocate somehow or help someone else with the knowledge that I end up acquiring. I’m not just trying to whine and complain. I’ve never been a whiner. Thanks to Dr. Diana, I know there is a light. Once some of the research is published, it should make protocol a bit easier and doctors can make better sense of such complex and all pervasive medical issues (in turn I’d feel more secure and at least a little better)..
Remember the saying, “Oh, I need a vacation”. Well, I’ve noticed that many people (not EDS) who have related to me with their dreadful ailments seem to have no problem ‘taking a little break’ if some sort of neat plans arise. I missed Easter festivities this year because I was crapping myself, among other things. Point: it’s so consuming that there IS NEVER a break! Life is like a box of chocolates….. I can manage to sit for about an hour even with pain but crapping or vomiting, not so much. Migraines, can’t walk, gasping for air, not so much. I’m at the mercy of my health – every single day! Again, I digress – ugh!
So sorry. Can you tell that I am both under stress and also not feeling good?! There’s just so little left to ‘wring’ out of myself.
Gentle hugs <--- guess you know you belong if you get this one. Nothing like someone from church giving you a hug and you feel like you are going to scream bloody murder from the pain but are in such shock from the pain that you can't even draw in the air to do so. Again, I would say 'LOL' but not really very funny. Thanks Barbara!
Give My Daughter the Shot!ParticipantThanks, Barbara. This would’ve been posted before your ‘checklist post’ which I happen to like very much but I got tired and saved it without posting. Anyway:
It has been said and confirmed. I hear so many possibilities and ‘grasp’ frantically at many – with no ‘reserves’ to ‘run’ on. Maybe you know how that works out.
Anyway, Dr. Diana said MRI also and, regardless of read report, it should be looked at by someone knowledgeable regarding EDS, CCVSI, etc. I’ve printed and shown the info to my physical therapist and explained that if I have to do anymore horrible tests, I’d like them to ‘count’.
I may just have to ‘suck it up’ and see what my PCP says. Truth be known, while not everything I have to say is positive, she has been very accomodating with regards to referrals and she has ordered a lot of diagnostics. She has been the best doctor that I have ever had (in my current medical provider situation) for referring. She has been very willing to order diagnostics – just that they are traumatic for me and reveal little to no info and have seldom been reviewed with me. Like I’m being tortured w/needles and dye for nothing because they are diagnostics that are often without a knowledgeable basis or purpose. Example: horrific pressure in my jaw and head – horrendous – I’ve had 2 diff doctors order CT of head with and without contrast. There’s nothing there (or so I’m told). Worst of all, the CT scanner/equipment is archaic and not worth injecting dye into my body for IMO. It is so old that I understand the image quality is something like ‘6 slice’ versus ’60 slice’ <--yes, I'm a lay person but it was like at 10% for available quality of images. I think Diana said that a CT wouldn't provide the information that she might look at. My veins blow too. I haven't participated in the last head CT with contrast that was ordered for me. The pressure is down by now anyway - yes, I still have pressure but not consistent and alarming right now as it had been. If I have to allow injections of dye into myself (makes it hurt badly for me to pee for awhile so I suspect it's not good for me) then I want it to have some value to my health. I should do the MRI and do it right. The kicker of having the MRI done, more @^%%&$^$*(&@ dye, I think it's a contrast MRI or at least would need to be with contrast to be comprehensive. I am terrified by a phobia of this type of stuff. I mean terrified to the point of passing out, vomiting, turning purple, sweating through clothes, crying and regressing back to being practically a 3 yo who is terrified. Stupid, I know. Embarrassing, for sure. I oughta suck it up since those reactions now sound like 'a day in the life' anyway. I would say 'LOL' but not really funny. I feel like I'm leading myself to the slaughter, as phobic as I am. I do thank you for saying this - I thank you very much. I fully trusted Dr. Diana's previous recommendation and took it to the doctor when she said it. PT didn't 'jump' on it (physical therapist so isn't really her realm) and I didn't push it either. Your saying it again has told me that I'll have to push to have this done. I'll use some of your reasons as well as Dr. Diana's as I prepare a confident and educated presentation for my PCP (maybe PT can relay). I'd love to be paid for my efforts, seriously! It's an exorbitant amount of non-existent 'reserves' that it takes for me to orchestrate all of this. If I had the ability to juggle/handle/deal with/orchestrate/prepare/educate myself, I would certainly put it to proper use via a well paying job!!!! I just miss my job, insurance and my own doctor who knows my character and would help me. Worst part is that, even after all of this, I won't be 'fixed'! Like working hard for a nice vacation or a nice home - now I'm working like a marathon runner and not earning, climbing a ladder or bettering myself (yes, I know health maintenance is paramount). Just that now my best possible benefit is to use my bloody stumps to grasp and cling to a steep cliff before I actually crash onto the bottom. Degenerative, that means that I'll be hanging near the bottom with painful stumps. I just thought of that description. I think my frustration comes from quality of life issues. I really was very proud of my life and felt good about myself as a human being. I also made good choices in life, almost all the time. I respected and cared for others. Strong work ethic, I always honored my obligations and I took care of myself and my family. It's hard to 'operate' like this, be exhausted as a marathon runner, suffer everyday - AND LIVE IN POVERTY! Logically, if one is working THIS HARD and feeling THIS WORN OUT - they should be EARNING and there should be some positive results, SOME REWARD!!! Even if the reward is just self-esteem and being proud for accomplishments. Though in my experience there is also financial reward and being able to effortlessly maintain the basic requirements of life. I am accustomed to trials and tribulations of 'head of household' but have no experience being poor and sick. It's dreadful! A job was a huge part of my identity and self-esteem. I have an entrepreneur type of personality and this loss of function/ability to enact my own will/independence is devastating to my core. I'm don't want it and/or I don't want to accept it. I can't escape it either. I try like crazy to figure out how to maintain it. Trapped. Hence the genetic doctor's recommendation of counseling. Yep, this 'vicious cycle' uses energy that I don't have. Guess I'm going down 'kicking and screaming' (<--hypothetically, of course) and only on the days that I can stomach (<---now that has the capacity of being more literal). It's crazy! Oh, let's not forget to factor in the random physical ailments into this cycle. I seldom have the function/capacity to complete small tasks. This health mess is much more than a simple task.
July 2, 2012 at 9:54 pm in reply to: Hypothermia? Bloodwork. Doctor cooperation. Diagnostic Proof. Foolproof diagnostics? #2518Give My Daughter the Shot!ParticipantI did not have a B12 or D deficiency, as I recall. I was low on folate. I asked, “Don’t they routinely add that into diet via things like bread?”. The doctor didn’t know. I knew because I am a meticulous pregnant person and, as a result, had become intensely aware of nutrition. I eat plenty of things with folate but I guess I was low. I think folate is water soluable so it wouldn’t be tough for it to take a quick ‘dip’. Is this correct?
Then nobody understood the high strep. I even asked another doctor (the one who didn’t believe in fibromyalgia) and when she finally located it within the multitudes of bloodwork which was ordered she was very confused, said she didn’t know, and swept it under the rug. I haven’t heard any more about that one. ASO titer or something. I hadn’t had strep. A little while later tested negative for strep. If it’s causing me to feel this bad, I’d love to try and handle it though. Know what I mean?
Since I don’t know the abbreviations, I have hundreds of blood results and many of those that are H and L (high and low, not normal) and I have no way of having any idea if there is meaningful information within my bloodwork.
July 2, 2012 at 9:45 pm in reply to: Hypothermia? Bloodwork. Doctor cooperation. Diagnostic Proof. Foolproof diagnostics? #2517Give My Daughter the Shot!ParticipantYes, I meant to say macrocytosis (enlarged red blood cells). I am on no medication for this. The doctor who actually told me that this was discovered (within the 24 tubes he ordered to be taken from my 5’8″ and 110 lb terrified body) is one who treats me like a whiny hypochondriac. The nurse almost collapsed my vein and I was purple and had regressed to the mentality of a horrified 3 year old. This was the only bloodwork (aside from TSH) that has been reviewed with me. I was refused a Free T4 for a couple of years.
Anyway, yes, macrocytosis. Please feel free to let me know of any potential medical negligence. While I live in a relatively lawless state within the US, I’d still be interested. Also, I’d like to figure out what to make of the various doctors and whether or not I can trust them or should avoid them at all costs in the future.
As for the CCSVI, I know almost nothing about it. This is the one that Dr. Diana can diagnose with an MRI or MRA, I think. I do think I need an MRI for that and if I submit myself to more traumatic testing, I will be sure that it is ‘expert approved’ by a doctor who understands EDS and associated issues that I have (like Dr. Diana).
I will continue to read and re-read your response and your interpretation of my X-rays. Of course, I fully understand that it is not a medical evaluation. I’d just like somewhere to start and know whether or not I need to explain to the doctor that I am, indeed, having some issues. I know I feel terrible and have always been told of misalignments (which I assumed chiro care or time had remediated).
OH, NO I DID NOT BUMP MY HEAD prior to that X-ray. I did have a concussion but that occurred later, maybe around 2002 or 2003?
Thanks, too, for endo info. I began to respond but was so exhausted that I found myself running on. I ended up copying and pasting into emails so I could review what I was trying to say and post back to you later. I do this a lot when ‘brain fog’ kicks in on me and I can’t finish my task or lose track of my composure. I also felt that I was whining too much. I guess, beware of run-on, whiny post under endo section since I am, again, feeling exhausted and won’t be able to edit myself much in the case I decide to go ahead and post now. ๐
Did you think I meant macrocytosis? Is there a medication for it? The doctor told me that it’s something alcoholics get. Well, color me purple! I’d be terrified to even attempt a glass of wine these days. I’m so dysfunctional that I can’t afford to lose a shred of my ‘wits’. I can’t risk a glass of wine. I do miss having wine with dinner in the past or chillin with my co-workers and having a glass after work or even just enjoying one as a toast to my health, success, and happiness! It couldn’t be more diff now though! Then the doctor peered at me to see what my reaction would be if he implied that I might be an alcoholic – mine was a look of utter shock and being blown away by the mere implication! I had to look up macocytosis when I got home but never really ‘got it’ or else was simply overtaken by the multitudes of ailments that plague me daily.
Thanks for taking a peek at these posts. I appreciate it a lot!
Give My Daughter the Shot!ParticipantCAUTION: HAS BECOME A LITTLE LONG WINDED
Hi Barbara, Thanks. I do, VERY MUCH, wonder about the overlap – regarding INSANE FATIGUE! I am definitely hypothyroid and levels were 20 times what was the HIGHEST NORMAL RANGE and 200 times over the lowest normal range -they thought my fetus and/or I might die. I felt horrible; dragging myself around and could barely move -even to breathe. Terrible. I’ve now been told that the ferocity of onset for me probably destroyed my thyroid’s function and it wasn’t likely to be functional again on its own. I had an incredible endocrinologist (prior to moving) who was trying very hard to ween me off of synthroid (since I was postpardum hypothyroid by definition). Literally, back to back babies – and, yes, I know that has taken its toll on my body and organs. HERE’S THE DEAL, I am obscenely exhausted and yet my thyroid isn’t profoundly out of whack. My thyroid being what I thought, for quite awhile, must be the culprit of the exhaustion portion of my misery.
The source of my exhaustion almost has to be complex. My genetic doctor mentioned CFS and I’d previously wondered just how on earth bad could fibromyalgia be! I guess the EDS can be exhausting too. Now, logically, what do I try to maintain FIRST to salvage what little I have to work with? See my mind-boggling dilemma?! Like goal setting – what goals do I set? Where the heck do I start.
I have the same confusion with headaches and migraines. Are they a TMJD thing? Is it thyroid related (the knowledgeable endo told me that hypothyroidism causes brain to swell causing headaches). What and how do I treat? What is causing it? Where do I start? I am so ‘beat down’ that I HAVE TO WORK SMARTER AND NOT HARDER. Which is the smarter direction? Where do I begin with goal setting? How do I maintain or (as genetic doctor said) delay degeneration?
Truly, it’s the same confusion with EVERYTHING!! Neuropathy, what to do? Do I even worry about the fibromyalgia? Who cares about the heart now since it’s had it’s time in the spotlight. What human being has a brain that is equipped to deal with all of this crap WHILE THEY ARE LITERALLY LIVING IT!! If that’s not bad enough LIFE IS LIKE A BOX OF CHOCOLATES, I NEVER KNOW WHAT I AM GOING TO GET!! It changes up on me! Ugh! Layers, it never goes away – until the next nightmare symptom commands just a bit more of my attention. How on earth am I to come up with a plan of attack? What on earth do I ask my PCP to start with? What can I maintain that will give me the most relief/maintenance/delayed degeneration? What’s first?
Does it matter that I’m trapped on the toilet for days? If I randomly vomit, I have no idea whether I’m actually sick or not since my body is such a disaster that it freezes me, burns me, launches me into completely unprovoked sweats, forces me to sit, won’t allow me to grasp things, ticks-twitches and jerks, won’t do hardly anything that my powerful willpower tells it to do, AND FAR MORE BETRAYAL THAN I CARE TO NAME RIGHT NOW. When/How am I supposed to care about a mere symptom when there are such a multitude each day. A 5 day long migraine – a problem?- or onto the next set of horrors?
I chase my tail, that’s all! I’ve tried to pretend it away, very unsuccessfully I might add. I’ve tried forcing myself to do things that my body won’t allow – and my body shut down further and burdened me with a HEAVY set of additional horrible reactions to my imposition of the will of my brain. What did I force myself to do, you ask – things like picking up a barrette and a few other weightless items off of the floor. Trying to do a few dishes or a load of laundry. Things that it made no sense to me that my body would not do!!! I’ve tried telling myself – oh, that’s ok! Like in the movies where the comedian stands up after being run over by a few dump trucks; has an arm broken off and laying there, an eyeball hanging out, and a compound fracture of the leg with some silly ketchup -then says I’M FINE or THAT’S OK and it’s funny because it is such a hilariously ridiculous statement given the circumstances. Of course it’s not ok if your arm and leg are ripped off and eyeball is dangling out of socket. I doubt I’d even laugh at that anymore because it’s my real life now! Also, I do wish I hadn’t bullied my body around. I wish I could have gotten some medical support and been given a reason why I needed to slow down!!!! I could literally notice that I was becoming unable to do things that I could do 30 or 60 or 90 days earlier. I had a flu that I never recovered properly from or should I say never regained my former level of function (never made it back up that last step down). I was significanly impaired before that flu. I can’t tell you how many times I’ve wondered if I were going to wake up. At first it worried me but it doesn’t anymore – I detest the suffering! And, no, I’m not whining to die or anything – just saying that I can’t do it alone and if I can’t get medical help there is no point of worrying too much about it. What good would it do? I really feel like my hands are tied here.
Sorry that what has begun as a thyroid issue has become a gripe session. My plate is so incredibly full – it’s awful! I still remember my life about 10 years ago and it was COMPLETELY different in every way imaginable! I had an amazing life that I loved! For awhile I wondered whose life am I living here – and that was when I was feeling much better than I am now. It’s just really incredible! I wondered what I did wrong to deserve this but realized within a few months (8 or 9 years ago) that I could have never done anything THIS WRONG! My health was exponentially better then too!!! I just don’t bounce back from the plethora of health issues now – not at all. The health issues have caused other horrible unbearable issues also. Gimme a break, you know.
Thanks for listening – if you made it this far ๐
Give My Daughter the Shot!ParticipantI can’t lean over either! I get nauseous like mad, pressure, sweaty and sick as heck – puts me out of commission and I have to immediately sit! I’m talking lean over to pick up a dropped tissue, barrette, or anything of virtual weightlessness. NOW, I can’t bend either because my joints hurt like heck. If I can’t lean or bend, how the heck am I supposed to clean my house??? Anyway, I’ve been incredibly upset about this and it was suggested (by someone knowledgeable) that it might be POTS – also might be tethered cord (by the same knowledgeable person).
I haven’t been diagnosed with POTS by a doctor but can’t stand much and am forever having to sit – that hurts too and my legs are a disaster area – so I have to stand briefly to unkink my tweaking legs – repeat – repeat – repeat.
Freezing limbs that have always freaked people out with major concern have now been met with burning heat and sweating through my clothing (ammonia like sweat). I think I fall into the range of being emaciated (and YES I do eat) so how on earth am I burning with sweat, randomly and for zero reason. I cannot tolerate heat anymore yet used to bask in it like a lizard or something. Used to LOVE heat as long as no humidity.
My heart races high and dives low for zero reason!!! Random!! My body ‘shuts down’ on me, AGAIN, randomly and for no reason at all. Stressful, for the first couple of years I would go around in circles as though madly chasing my tail in a confused and panicked effort to keep from hitting the floor. I feel as though someone or something is yanking the hair at the back of my neck backward and downward and my balance fails me. And, no, I don’t get the sensation in my hair – just my neck or head fails me and won’t stay upright properly.
I don’t know about POTS but DYSAUTONOMIA sure ‘hits the spot’ with what I’ve been experiencing for these last years. I haven’t been diagnosed with either. – Probably because I am deemed a liar or an exaggerator or annoying in some other way because I have too many problems or because one of the many doctors who keep replacing each other don’t believe in fibromyalgia. Or I am overdiagnosed and a hypochondriac (if I bring my notebook to prove that I’m not lying about the outlandish health things that I’ve endured). Basically, when the doctors leave and are replaced (high turnover), it’s a nightmare of losing the pittance of understanding that I had formerly broken my tail to acquire.
Just can’t win in efforts to secure a doctor. So much for 1st do no harm, huh. I sorta wish there was something that could legally be done to make the doctors be accountable to at least behave properly. It’s not a crime if they don’t understand but I think it is a crime if they abuse the patient by treating them like they are a ‘crazy’. That’s just not right!
Anyway, I don’t know if my head fills with blood when I bend over but I do know that it causes significant health problems for me to do so.
Give My Daughter the Shot!ParticipantHi and thanks for info. I’m stuck wondering if exhaustion is from thyroid or CFS or EDS. It makes it tough to know what to even work on. My endocrinologist was talking over my head about how some people have more sensitive thyroids. On and off balding. Migraines and regular headaches (my good endocrinologist that I had to move away from) told me that there is brain swelling with hypothyroidism and it could cause headaches (if I’m remembering correctly). Same here, regarding second pregnancy when it happened. I never know what the heinous symptoms should be attributed to hence go nuts trying to figure out how to manage the nightmarish array of daily symptoms. Thank you for your info. It means so much!
Give My Daughter the Shot!ParticipantI just wanted to send love your way! I’m so overwhelmed with emotion when I listen to your description of the medical care you’re experiencing. I also relate to your description of your ‘existence’. Did I ever used to ‘have it going on’! It’s insane and illogical to be so diff now! I do know of work being done with a PAC (Physicians Awareness Committee) but am as overwhelmed as yourself. God willing, someday, I’ll be able to be an advocate versus a victim. PAC would join together both experienced and interested doctors so that connective tissue disorders could be better understood and patient care might be improved. I just need to stabilize something here – ANYTHING! Enough (‘s’ word) symptoms to drive a person crazy – literally, I’m sure! Especially with doctors pathologizing us in non-applicable ways or otherwise writing us off.
I, too, struggle to comprehend and feel the need to be spoon fed. I’m killing myself trying to figure out what to work on to improve my devastatingly dysfunctional global health. I can’t understand any of it either and have always had significant intolerance to medications (contrary to having to endure doctors treat me as though I’m a druggie looking for pain pills – what a HUGE INSULT!). Where to start? What to eat? My genetic doctor says there is nothing to eat that will replace collagen + it’s not that we don’t manufacture collagen – it’s just defective collagen! I’m EDS.
Anyway, I wish I could help but I am in the same boat as you. I just wanted to let you know that I understand and care ๐ .
WOULDN’T IT BE LOVELY IF THERE WERE A STEP BY STEP PROTOCOL? Maybe front line trials, then we could move to secondary trials and so forth. Is it Z/Z first, then Diamoxx? Or are the they supposed to be employed in conjunction with each other?? See, I truly am in your same boat. Then there is the diagnostic arena – WHAT DIAGNOSTICS CAN I ASK FOR SO THAT I CAN – IN YOUR FACE – TO ALL THE DOCTORS WHO DOLE OUT THE HIDEOUSLY DAMAGING TREATMENT?! I’m tired of being treated like a liar and enduring doctors’ trickery that suggests that it’s all in my head!! The trickery is aka gaslighting and is a form of abuse!
Yet again, I can only send support and do know that I will be sharing info as I gain it. Meanwhile, if you are able to discover any helpful treatments, please share ๐ .
God bless.
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