Maxine

Tachy, I think the ER doctors did know. The trouble is that people with EDS aren't taken seriously about how serious it can be, and that vascular complications can happen with ALL forms of EDS, although type IV/vascular type the chances are much more likely. I don't know if her death could have been prevented, she was treated very poorly that I question the ethics of all of those hospitals who blew her symptoms off. You would think that one of the three hospitals would have had one of the docs GET IT. Her BPs were VERY HIGH with very narrow pulse pressures, and this was completely out of her usual symptoms. She was so upset those weeks. Her EDs doc did do a ECHO and ultrasound of her heart and aorta a year prevous to this. However, her aorta was thinning, and I don't think the ECHO picked this up. When she went to the ERs, they could have done an abdominal CT because she complained of abdominal pain, and pain in her mid back. If the ER docs would have known more about EDS, taken her physical complaints seriously, and the obvious HI BP issue in their face, they would have done a CT scan and caught it, or at least I assume they would. She could have been taken to the Cleveland Clinic. However, she was there a few weeks before this to see a spine surgeon, and they didn't know much about EDS, and I can't find much on their website on EDS. I went there to see spine surgeons for my cervical/cranail instability, fluid in mastoid area of skull but no history of middle ear infection, left vertebral artery missing, blown disk on thoracic spine, and other spine issues. These surgeons didn't know much about EDS either, and one surgeon was very arrogant and dimissive. I stood up to him, and I informed him that he needs to look at the DVD from EDNF on vascular EDS, as surgeons especially need to know about the vascular complications, and how they are handled if they occur. He said "duly noted" in a very condescending manner. I "handled" the situation, and I continue to talk with the doctors at the Cleveland Clinic about EDS. The other doctors have been more receptive, and one neurologist has taken me on as a regular patient. Cat Lady I have been hypermoblie all my life, and had I known about my EDs back then I would have never stood on my head and folded myself up into a box. As a kid I used to show off all the positions I could put my body into. As I became a teenager, and up to mid 20s, I workd various jobs that were physical, and I know this contributed to a lot of my spine problems combined with the EDS. Retrieving grocery carts was the worst on me. I ended up working in commercial collections in an office after that, and eventually became an office manager over the next 16 years while going back to college. I had to drop out of college due to crashing with my POTS---and at this time still didn't know I had EDS. I went back to college after cervical spine surgery and complete a certificate program in medical coding. I hope to work again someday, but for now I'm on disability. Right now I'm battling a virus, and coughing is horrible on my neck. Doctors need to look outside the box, and LISTEN to thier patients. I notice a lot of discrimination taking place, especially on woman-----and it's especially prevalent among overweight woman, many of them being treated with egregious disrespect. Maxine :0)

Praying for you Cat Lady. I hope it passes for you quickly. This is a scary season. I'm fighting a virus myself right now. Last year I think my sister in law and I had H1N1. I don't think the fever lasts 10 days though-----that was unusual for your son to have a high fever for 10 days busymom----did he get a secondary infection?-------the poor guy. Our fever was for 2-3 days, but the whole duration of the flu was about 7 days. BIG HUG to you. Maxine :0)

I'm sorry your facing possible EDS. I didn't get diagnosed until 2006 at 47 years old. This was the "official" diagnosis by a geneticist. In fact I had an appt. scheduled with my EDS Doc geneticist today, but I have a bad virus, and I had to cancel. they let me wait until this morning to see how I was feeling, but there's was no way. We had to drive 3 hours down to Cincinnati. With my POTS, other health issus and the virus, there was just no way. Go to EDNF http://ednf.org/ and you will find a lot of information there that will explain everything you need to know about EDS. EDS has affected my life considerably, and I would have never imagined my body would feel like this. There's days I feel like my joints and ligaments are barely holding me together. I'm diagnosed with classical EDS with hypermobile joints and vascular involvement/poor vascular tone. Although vascular complications aren't common in other types of EDS other then type IV/vascular type, they can't be ruled completely out. A close friend of mine passed away from a ruptured aorta, and she had hypermobile EDS. An important thing to do is have a cardiac ECHO, and an ultrasound of the FULL aorta. As far as other testing goes, genetic testing can be done for type IV, and Classical. Type III/hypermobile type is a clinical diagnosis based on information, patient history, and physical exam by a geneticist who has extensive knowledge on EDS. Good luck to you, I hope if you do have EDS it's mild and doesn't have any major complications. Most people with EDS other then vascualr type have a normal life span-----------but surgeons and other physicians need to know if their patient has EDS, and the complications that can come with it. Maxine :0)

THANK YOU futurehope, I hope so. I'm just not in any shape for this thing to get worse. Last year I got so sick I couldn't see straight, and couldn't get my fever to go down. It was in mid March, and my sisiter in law and I wondered it it might have been the H1N1----it's the worst we even felt. I have this lump striaght in the back of my throat for a few weeks---or it feels that way. Everytime I cough I feel that lump. My head is so clogged up, and hoping it does pass quickly, but thinking I'll have to reschedule my appt. in Cincinnati with the EDS doc. We'll see....... praying..... Maxine :0)

Maybe you can discuss a pace maker with your cardiologist, or have an adjustment on medication-----28 bpm is way too low. It definately needs to be discussed with your doctor. I never get below 60bpm on 20mg of propranolol 3 times a day. That must be really scary----------------I hope you feel better soon! Maxine :0)

Thanks--- We'll see how I'm doing tomorrow. I'm afraid of that stuff. I have autoimmune issues, and fear that would start another cycle of other problems on top of what I already have. However, I'm keeping a close eye on things to make sure it doesn't move into my chest. Earlier today I felt like I couldn't get a breath, but I think it was just really bad OI. I can tell when my hand veins disappear---I'm constricting too much to compensate for the OI, and when I do this I feel terrible. I felt like I couldn't walk 10 feet. I hope it's just a cold. I'm a BIG whiner with viruses. I have so much going on, and I don't whine about that-------------it's just when something else like a virus pops up to make everything worse, and makes me too weak to deal with the rest. It would be pretty amazing if I woke up tomorrow feeling a lot better, and I could keep my appt. with my geneticist. If not they said they can talk with my EDS doctor's assistant to try and get me in sooner then Feb. Hugs to you all---I appreciate you support. Maxine :0)

I should have left. I'm paying for it now. Every time I cough whatever is poking out in the back of my throat---(feels like it's coming from my neck), I can feel it poke out more----sort of feels like a hernia, but coming from the outside in. It feels like the side of a large marble. The right side of my neck is swelled also since May. I'm figuring it's from my on going cervcal spine problems combined with the EDS. Maxine :0)

WHY DON'T PEOPLE THINK! This is really a bummer, I feel like I drowning in mucus. The pressure on the sides of my head are intense, and I'm so weak it's making me shake, but at the same time feel like crawling out of my skin. The ANS is really feeling it......... Why do people come to family gatherings sick?! First, my cousin's son has cystic fibrosis, second, there's little kids, and then you have me with the haywire body. Do you leave? I really look forward to those family gatherings, and if I was sick I wouldn't go. We were celebrating the October Birthdays, and my brother's Nov. 10th b-day was thrown in there. The whole family was there at my other brother's house. All it takes is on sick person, and it can cause all kinds of trouble. Did you notice nothing works right when your like this?----including guts, then when they work it's not fun causing more fun ANS stuff----all while you feel like you can't get your breath. I took a half a klonopin ---------- (I do this on rare occasoions, that's my "easy" button in times like this). Tomorrow is my appt. with the geneticist------it's looking like I have to reschedule. I called today, and they said they won't charge me if I wait until tomorrow to decide. Otherwise I may have to wait until Feb. I really would like to make it tomorrow. What to you do when someone comes to a party, family gathering, church-----whatever when their sick spewing their germs everywhere? I have a lot on my plate right now, and I really need to keep that appt. Maxine :0)

Thanks---I appreciate that........ I don't think anyone else knows what to say, and that's why they aren't responding........ At least it's sounds good---lol. I just don't know how he'll respond, but past experiences have been good with him. A close friend of mine was a patient of his and she died following lumbar spine surgery or a ruptured aorta----complications of her EDS. She was supposed to go with us, because she needed a ride----we have our appts. scheduled together. Her aorta has been thinning, and she had been to three different ERs here in town, and all blew her high BPs, and narrow pulse pressures off as an "anxiety" issue. I don't want to put a lot of pressure on him for the problems I have that are presumably related to my EDs, but yet no other doctor knows my history as well, other the Dr. Grubb. I've had more tests, and the testing from ENT points more in the direction that this mastoid fluid is caused by something else other then a middle ear infection. However, the other surgeons I saw just dropped the ball and said they don't know why this fluid is there other then possible PAST ear infections. As I said this didn't show up until 2005. A CSF leak can give this appearance. Now the fluid has shown up again on 2 recent CT scans, and another MRI. Something about this fluid being there for over 4 years that points to something not being "normal". At least I have a neurologist at the Cleveland Clinic who has taken me on as a regular patient because of those leasions. I'm on disability, and I'm sure if I had the daily stresses of working full time like I did for nearly 22 years my symptoms would be more progressed. The last three years I worked before becoming disabled was as an office mgr. with a lot of responsibilities, and 50 hour weeks. I'm so thankful I was approved for SSDI. Maxine :0)

I definately agree-------------the mall is so intimidating to me, and I rarely go unless my husband is with me. He'll even carry my purse for me. He's seen me on the verge of collapse so many times, and knows what I can handle. Often when I get to one end of the mall, I can;t make it back, and he'll go get the car and pick me up. One couple asked me if I was OK last year because my color ran out of my face, and I had to put my head down while sitting near the entrance----------------It was worth it because I finally got the shoes I had been looking at for three years-----LOL. They were also on sale and Josef seibel shoes never go on sale. I got them in black.... http://www.zappos.com/n/p/p/121346/c/10447.html I know they're not fancy, but with EDS you have to think what is going to support your foot the best, and look good with jeans, or dress pants. I'd love to wear a dress or skirt, but dress shoes with high heals are out for me. I can only wear them for a few minutes or my feet---(especially my left foot) will dislocate the joints and ligaments on top of my foot. Clarks are OK for me also, but the clogs are not supporting my foot as well anymore. I like shoes that make me look a little taller, so I have to go with shoes that have a platform. Another shoe that works out well is a pair of black ariats http://www.thewalkingcompany.com/brands/Pr...p;source=Brand# I'm looking forward to another pair of ariats. I bought these for a specail occasion----but as I said, I could only wear them for about 10 minutes----lol. Just as a gift for my husband----lol. Something sexy: http://www.kohls.com/kohlsStore/shoes/bran...Dress+Heels.jsp they were cheap----I didn't want to spend a lot of money on somehting I would only wear for a few minutes. It's sad I have to give up sexy shoes, but there's things that are worse. I could be in a position that I couldn't walk in ANY shoe. Maxine :0)

Thanks Sara, He's definately aware of all of this, as he is the one that recommended to orthopedic surgeon who wants to do a fusion. unfortunately it's more complicated then that, and he and I both agreed we need a neurosurgeon on board. At the very least to watch things closely, and taking this anatomy at the back of my head seriously. I'm just afraid I'll scare him away, and he's an excellant EDS doctor. He's tried to find a neurosurgeon, but he and another geneticist from NIH said NSGs don't understand the connection of EDS and cervical/cranial instability. It's not because of a deformity of the skull, it's because the joints and ligaments that hold everything together are stretched out and not stable enough to support my head properly. It's seems they don't get this even though it makes perfect sense, and the evidence is there, but because it's a little bit of this, and a little bit of that----they won't investigate it further. I don't know how big this swelling on the side of my neck needs to get before something POPS, but it looks like they won't take it seriously unless something more drastic happens. Maxine :0)

Bumping this---as I don't want it to get lost in the shuffle. Sould I discuss this with my EDS Doc?-----just need opinions---- I'm not sure where to tun on this. I'm praying this little virus doesn't turn into a big one---getting sniffles, and left ear pressure---along with the left side of my face hurting---but mild. It is annoying right now, but not knocking me down---just a little more worn out then my usual. We have to drive to cincinnati to see the EDS doc Friday. Maxine :0)

The major clue is Pannus growth on odontoid bone, usually indicative of cervical/cranial instabliity----(this is the smoking gun for neurosurgeons to pay attention to). Since May of 2002 when I got my first clues that something more then my POTS was going on, and I started to get several more clues. Dr. Heffez found that my posterior fossa was small, and showed some concern for the right vertebral artery being enlarged. He said the one on the left was hypo plastic, which I found out later the artery isn't even there---(in the brain anyway). The big obvious thing was the two herniated disks on c5, 6, and 7 which Dr. Heffez said I needed replaced ASAP. This was done the following month. Since then the surgery helped this area just fine, but everything else has begun to fall apart above and below the area. The c5,6, and 7 area is held together with a fusion, plate and screws. OK----we all know by my previous postings that the boat load of doctors I have seen so far have four docs who get it---maybe five. However, only two surgeons take it seriously. One I'm steering clear of due to their ethics, and the other is an orthopedic surgeon who wants to do a c1-2 fusion, but I have other complications with the vertebral arteries. The one on the left is missing in the brain, but not my neck-----hmmm, where did it go??? Now with this pannus growth, enlarged right vertebral artery, small posterior fossa, partially blocked cerebral spinal fluid which was on the CINE MRI report, the swelling on the right side of my neck near clavicle--(since may),the scattered lesions in deep white matter of centrum semiovale, and frontal regions, and FINALLY the fluid/opification in the right mastoid air cells, do you think someone might pick up on this. I do NOT have any history of middle ear infection, and just had a full work up by an ENT. He said maybe I had past infections. However, this didn't show up until 2005, and I think I would rememeber a middle ear infection of this significance spreading to the mastoid area. SOOOOOOO, what is this fluid? From what I read it could possibly be a CSF leak---------YA THINK?.....no telling. It just seems that someone better pay attention, as the pain in another factor is this mess. I'm now feeling a bulge in the back of my throat---like it's coming from the other side of my neck into the back of my throat. I'm also getting more significant pain in thoracic spine that pretty much brings me to my knees. Should I discuss any of this with my EDS doc? He's been one of the few who has tried to find someone to help me with all this. So far all I've had was dismissal---and the latest was from another orthopedic surgeon who told me I need some form of PT---possibly aerobics. A NSG sent me to him, because he didn't feel there was any significance to my instability. I suppose the NSG knew what he was doing, and thought this guy would intimidate me enough to stop my need from someone to tell me something is wrong with me---(possibly thinking I want attention-----who knows! ) They got the wrong girl, it's doesn't faze me, and in fact when he suggested aerobics and blew off my smptoms I filed a complaint with the ombudsman dept. She took my complaint seriously, or she was appeasing me. Either way, now they know I'm not putting up with any rude or unethical behaviour from anyone there, I don't care how well "esteemed" they are. I do have a neurologist who is willing to make me his regular patient at the Cleveland Clinic, and I see him again on Dec. 21st. Meanwhile, my POTs/OI is takig a dump on me, and I'm assuming it's because of the other issues are getting worse. Just loving all this---NOT. Maxine :0)

It sounds like this can be pretty confusing when you have "normal" vitals, but yet feel sure they must not be because your feeling so poorly. Once when I went to my PCP, I was sure he would see very low BP, and my heart rate would be tachy---or close to it. I'm on 20mg propranolol 3 x a day, so when my HR gets high I feel pretty bad. Anyway, my BP ended up being 138/90 which is high for me. The only theory I can think of is that it must be "over shoot"----meaning I must have had a big dip in BP, and my body was trying to compensate and went overboard----- Sounds good anyway----or does it? I feel pretty bad when my BP is low, but I did notice that my spine felt buzzy----electric, but otherwise I was wiped out. A really good autonomic nervous system specialist will gauge your symptoms by other means other then your BP and HR. I get the low body temps also, and if it gets below 97.5 I feel really sickly---fluish. I'll ask my husband to feel my forehead and it's cool-----while at the same time feel sure I have a fever. Big HUG to you-- Maxine :0)

Thanks Jen and potsgirl-- I'm just not believing this OI is getting so bad lately. I should understand that with my other issues getting worse, my OI/POTS usually follows. I'm not even wanting to see Dr. Grubb. He's a great doc, but it's just the point of seeing ANOTHER doctor. Fortunately he's in the same town as I am, so this is one doctor I don't have to travel to see. I know so many of you have to travel to see him, and I do know how it feels to travel to see different doctors----It's not fun. Another symptom I'm getting is very clumsey hands, and my spine is buzzing when I over do things----i.e.----->trying to run a couple errands, walk a bit in the mall, or make some dinner. I always tell my husband how I feel lucky to have "steady eddie" hands, because his shake from familial tremors when he tries to do fine hand movements. I can put on mascara in a moving car! I can still do that, but I'm having trouble gripping the mascara. Another thing I have trouble with is putting my hand around a large cup to drink whatever is in it-----------I most definately will drop it. I have to put my other hand under it. sometimes I drop things that are feather light---(I don't understand this). It's like a sensory thing or something. Once I have an object in my hand that I can handle, my hand is steady. Another thing is my vision when I try to focus. It gets so blurry, and sometimes the words move around. Anyway, things are not going very well, and the narrow pulse pressures concern me------------however, I'm plugging along. Thanks again for all your support and understanding. Maxine :0)

I'm sorry that you have to deal with celiac on top of your POTS, but on a good note, maybe this will help with your symptoms once you change your diet. I totally understand why your bummed, as I love carbs too, and this is the majority of my diet. I'm not a big meat eater either. MY IGA is also high, but it's been blown off like a lot of other abnormal tests-----despite multiple diverticuli---(so many that it covers 3/4 of colon), and a 5cm diverticulum im upper small intestine. When I did the prep for a lower GI, I couldn't understand why I actually felt better. Probably because I couldn't eat carbs for two days. I'm in denial, and don't want to face this possibility. I can't imagine life without grain. On the other hand I think I can still eat chocolate--- . Take care of yourself. BIG HUG Maxine :0)

Thanks for your replies and support! I thought about bringing a possible spinal fluid leak up to my neurologist at the Cleveland Clinic. Hmmmmm, it will probably be dismissed though, even though I have so many problems at the cervical/cranial junction, and this weird left vertebral artery missing in my brain, but not in my neck going on. I also have the other problems mentioned in my signature line. I'm trying to be brief because it's late. I'm so wiped out, and can't begin to tell you the day I had today-----I'm basically down to shuffling like an old lady lady, and have such weird pain on the right side of my head I'm wondering if i'll wake up mornings. The swelling on the right side of my neck near clavicle---(looks like edema) has been there since may, and of couse this unexplained mastoid fluid, but never had a middle ear infection. What is this fluid? My friend from Calf. who has a very simular problem, but more advanced has done a lot of research, and she found out she has high CSF pressure, and one surgeon mentioned a shunt needs to be put in, but when she went to a big university hospital in Calf. they blew her off. You won't believe all the things that go wrong with pannus growth on the odontoid bone---as it presses on the brain stem, crowds the posterior fossa--(the opening that connect brain stem to spine), and it can also irritate the vagus nerve. My vision is getting so blurry, my speech is slurring--------ugggg, I can go on, but I won't. I have only had one cervical spine surgery in June 2002. I have been diagnosed with all this other stuff since, including partially blocked CSF flow posteriorly. I complained about one surgeon at the clevelan clinic to the ombudsman who was a woman. They sent me a letter of apology, as the orthopedic surgeon suggested aerobics as a therapy, and completely blew me off otherwise. Can you imagine with my EDS and spine instability? Not to mention my other joint instability that I don't discuss as much becuase everything else is so overwhelming. Thanks again for your kindness and support--- I'm still trying to get someone to listen to me, and also trying to get into see Dr. Grubb. Pulse pressures are still low, and heart rate seems low for me still. Maxine :0)

Is my POTS taking a dump on me? I feel my heart thumping harder when I'm trying to do a bit a physical activity while staning----.i.e.-----> loading diswasher, folding clothes/towels, cooking a lite meal, or just trying to walk around the mall a bit. I do get the usual switch going off bit as I always do when I have been upright too long----even sitting without changing position. This is different. It's seems to come on more quickly, and I feel like I'm in heart failure-----------but I'm obviously not according to my last cardiac ECHO. My heart rate is unusually low when I'm not upright too-----low 60s. This is unusual for me as I tend to hover around low 70s to mid 80s on my beta blockers. I also get the flu like feeling on and off. It gets to the point of making me paranoid on weather or not I'm getting the beginnings of H1N1. This scares the heck out of me. I can not imagine getting that on top of this. My mid spine is so on fire, and I still have the usual problems with my neck----you have heard about this already, so I won't rehash this. I'm wondering if the stess on my upper and mid spine is causing these other problems secondarily. This is so far over my PCPs head, and I haven't seen Dr. Grubb in quite a while. I called his office for a prescription refill, but still have not made an appt. I really do need to see him. However, I also need to see my geneticist next week on Friday the 6th first. He can write up a clinical report for Dr. Grubb that may be of some help to him. I'm wondering if I should just call Dr. Grubb's office to get the appt. set up? Wondering why these pulse pressures are so narrow. The pain in my mid pack gets so intense it takes my breath away. Maxine :0)

I'm thinking it depends on the person on how difficult it is to come off klonopin, xanax ect. I've been on xanax and came off it with no problem, and I've also been on phenobarbitol and came off it. On both drugs I used my common sense and tapered slowly, and had no rebound effects. I think both drugs were a good therapy, and had a long term effect. When I was on phenobarbitol I was on it for about 6 months. I was having paroxysmal tachycardia spells, and horrible adrenaline rushes, but no other symptoms like fatigue ect. IT didn't seem to matter what position I was in---it just happened. The phenobarb worked like magic. I was not taking beta blockers at the time, the phenobarb worked alone-----which tells me the origin of this has to be in the brain, and phenobarb is an anti-seziure drug. http://en.wikipedia.org/wiki/Phenobarbital When I started having the spells again in 1990, I was given betablockers. However, they didn't seem to be enough to stop the attacks completely. I took xanax, and my heart rate lowered, my baody calmed, and I tapered off them. In fact, I was able to taper my betablocker dose from 60mg Inderal LA once a day to the pill form of Inderal taking 20mg in the morning, and half that at night. I only had Chronic fatigue like symptoms for about 2 -3 months. I was able to work my job and feel fairly normal. In late 2000 I crashed badly, and have had lots of other problems. Beta blocker was increased to 20 mg 4 times a day, then I lowered it later to 60mg three times a day. When I was given ativan in the beginning of the crash It made me sicker, and didn't help that well with the adrenaline surges. I felt "out of body" on it. I went off it----tapered slowly. When Dr. Grubb diagnosed the POTS in June 2001, he but me on wellbutrin. This worked fairly well, but it seemed any time I got a virus, or a medical procedure my body went wild with OI and more adrenaline surges. Klonopin was prescribed in 2005. I only take half the prescribed dose, and this leaves room for the really rough days when I might need the full dose. I think if a person has a good doctor, and is sensible, this type of medication can make a big difference. If the body needs it----it shouldn't be any different from anyone who needs thier insulin. We're obviously missing whatever it is that puts things into balance, and it simply makes life more livable. Who wants to walk around when you constantly feel like climbing out of your own skin? Maxine :0)

When my sister in law and I got really sick last year she had confirmed pneumonia after she went to the doctor. This was follwing a terrbile fever, body aches, and nausea/vomiting. I had the same thing, but no vomiting, but could barely eat a thing. This was in mid to late March---I thought it was late March---early April but I found my old post on it. http://dinet.ipbhost.com/index.php?showtop...won't+break I'm thinking it was the H1N1 flu. The pulminologist found interstitial markings on my lungs after this flu. I went for a lung x-ray a while after I got sick because it felt like my lungs never cleared properly from this flu. I don't know if I had pneumonia or not at the time, but my lungs haven't been the same. My pulminologist said I have mild interstitial disease. If is wasn't the H1N1, it was another nasty, nasty flu. My sister in law just go over pneumonia again, but this time it was much milder. I think her lungs are more vulnerable now too. In mid February when my brother died, over 200 people came to the funeral home---maybe 300-----all exchanging hugs, kisses, and tears. It was a breeding ground for viruses, and we think this is how a lot of us got so sick last year. Maxine :0)

Sometimes "positive thinking" is AKA (DENIAL). I totally respect how your "dealing". Everyone has different ways of coping, but I feel one must be very careful because positive thinking can sometimes result in missing important symptoms. I try to keep a positive attitude, but GUARDED. I feel like I'm in a constant fight to get doctors to take my symptoms seriously. Dr. Grubb is one that does, but I don't try to make an appt. with him now because my problem is beyond POTS, and I have a couple other doctors who are trying to help me with those. They're about half way where Dr. Grubb is. Thery're listening at least, and one neurologist is trying to help from the Cleveland Clinic, and of course I have my EDS geneticist who is wonderful. My PCP seems OK too, he'll basically just lets me tell him what I need, and he does it. Every once in a while he pulls something put of his pocket that surprises me, so I think he actually tries to learn about dysautonomia, and EDS. I'm still struggling to get proper management of symptoms. I figure I have two different lives. One with my buddies from the forums, and the other with the other world of family & friends. Not that quite a few of my dysautonomia and EDS friends haven't blended into the other world with this. We have a different bond, in that we know how this difficult disorder is and find different ways of coping. When one of us falls down the other one is there to pick us up----weather it's just emotionally, or actually physically finding a way to PICK US UP. There's nothing wrong with looking up the latest medical research, as long as you keep your wits about you and not assume you have everything you read about. I love finding different medical research papers that may help someone, or possibly help towards finding answers for myself. I've always been a science nerd, and it gives me a sense of purpose. It's also definately a good way to keep the brain exercised for sure! Medical terminology is difficult to understand, but if I don't understand a word, I research that too. I did take medical terminology classes, and anatomy/physiology as part of a medical billing program I received certificates in. It was a year long program, and I really liked it. This was in late 2002, and 2003, and I was hoping to add this to part of my business knowledge and education and shift my interests in Hospital administration. I tried to go back to work but found just looking for jobs and going to the interviews exhausting. I finally accepted the fact that I couldn't work. However, my efforts proved useful in many other ways, one of them being able to understand quite a bit of the medical articles I find, and sort out which ones are useful, and which are not. All of this helps me to stand up to doctors when they are dismissive, or sometimes even rude. This disorder has taught me a lot, and to me this is one positive aspect that keeps me going-----the fact that I can help others, or maybe even point them in the right direction. It has also helped me to appreciate the things in life that I took for granted----like listening to the mourning doves sing, or watching the squirrels in the neighborhood. Appreciating my family more, and taking in the full joy of my granddaughters, and all the little children around. The magical wonder joy they bring is beyond my words. I just accept my illness, and try to live the best I can with what I have, and hope that things will get better for my physically as I continue to fight the medical profession to get past THEIR DENIAL. Maxine :0)

If you do have a confirmed diagnosis of joint hypermobility, it's important to have a cardiac echo and an aortic ultrasound. All type of EDS have this screened. Seeing a connective tissue specialist/geneticist is really the best way to go to get a proper diagnosis, and for any advice on treatment plans. Good luck to you--- Maxine :0)

Thanks Ernie---

How sad. I can't bring myself to watch it. Sounds superficial. Maxine :0)

Hi Ernie----------- What's the name of the top researcher? It will be interesting to see what he finds out. HUGS, Maxine :0)