rubytuesday

I was a bit confused yesterday when I saw genetecist for EDS III. When I told him a year ago, the heart specialist in dysautonomia said I had POTS but now it is orthostatic hypotension and the ANS is failing, the genetecist mentioned EDS/POTS relationship but not relationship with OH and ANS failing? Whereas cardiac specialist well-versed in EDS said blood/fluid pooling in leg/feet were in part from weaken muscles/veins from EDS, genetecist says it could just be from the ANS failing. (Kidney fx normal and no pheocytomas--sp?, + endocrine fx nl, and dopplers of lower extrems/abd/pelvic US nl). So I have 2 specialists telling me its EDS III and genetecist telling me it most likely is but cannot say definitively without more than jaw/ dislocation, fingers subluxating and one knee subluxating once) b/c of age (mid 50s), body deformed from osteoarthritis (and glutts and tendon torn off hip bone from being hit by car 71/2 years ago). I was shocked when he told me to touch my toes (already knowing the pain in my hip and my orthostatic hypotension/ffainting history and possible more faints with fewer warnings). I did it and as I was rising very slowly, he asked me right away to turn to the side. I got dizzy and had to balance myself holding the cart next to me. He added he thinks there's autoimmune stuff going on altho repeated intensive testing has shown nothing. He never did full exam, measuring wing span or examining scars or transluscent skin in places or other large areas of skin that are stark white. Never examined the big joints. So I have 2 specialists saying yes, EDS III and a genetecist that says most likely is but can't dx it officially without more dislocations in larger joints. My Delta Granule Storage Pool def. was not of significance w/ EDS either (which was contrary to what his book). I think I had cut into his lunch hour by the time his staff had made all their entries into the computer. We live an hour away. Appt. was for 11:30--his girls started on me early but he didn't get in there til after noon and we were home before 1:30. (EDSers told me he spends couple of hours with you). DSs dilated aorta, GF passing from ruptured abd aortic aneyrysm were insignificant--but he kept urging me to have DS, family and g-kids checked out while they are young b/c I most likely have it. Gee whiz? I am down to 91 lbs now and gastric mobility issues were attributed to him by dysautonomia. I am so, so confused and discouraged. I'm going to the two hemeoncologist appt. already set up but unless they can find something I'm done. I've just told DH to keep notes, do autopsy and to sue with complaints documented yet unexplored. Genetecist told me even if he gave me the dx ('don't want to add another dx to list of things you already have'), he would instruct his patients to do exactly the things I am already doing. So I feel like I am in limbo with all of this. I told him sometimes when I exercise the BP would go too high and HR too fast. Now moreso, the BP will drop and HR go in 120's -102 range (whereas before it was in 150-170 range, but that I am on Midodrine and just had Mestinon stopped. I wish I could wrap my head around this stuff.

I'm confused. Two specialists had diagnosed me with EDS III. Cardiac specialist in dysautonomia explained to me that EDS could definitely be contributing factor to the blood/fluid retention in legs + feet since EDS not only weakens muslcle structures but veins as well. Kidney/endocrine function is normal. No pheocytomas (sp?). Genetecist today tells me probably is EDS III but cannot say definitively due to my age/racked body with joint stiffness (altho I could do the hand things, stretchy velvety skin, veins visible in skin, skin very white in large places)--it was that the jaw subluxations and finger subluxations and knee subluxation were not enough. He said he couldn't put definitive on it without more joints dislocating and subluxating but he was almost certain I have it. Advised me to have DS, g-kids, sibblings and their g-kids on alert for a check while they're young. I asked him about the pooling in legs (he knows my cardiac specialist) and he tells me that it might just be from the autonomic nervous system failing (which was one of the things the cardiac specialist told me). He also felt there was strong sense of something autoimmune (yet test after test after test to date have been negative). He never examined my scars (that his counselor said would and he had me bend over to touch my toes--which scared me to death--first I told them my pain was about an 8 by the time he got into the room from the glutteal muscles/tendon being ripped off my hip bone, and because I have orthostatic hypotension and bending at the waist can make the BP drop and cardiac specialist told me I would have fewer warnings of faint. I did it, but rose slowly and was feeling a bit dizzy and hadn't even got up when he told me then to turn to the side). I have 2 different hemeoncologist appointments upcoming for multicomplex immune deficiencies and bleeding disorder. I don't know if they'll explore that or if I'm still left hanging. Thanks for letting me vent.

Just sending happy birthday wishes across the miles.

Yes, thanks for posting. I was on Mestinon with Midodrine, but couldn't tolerate the Mestinon, so the only thing trying to hold my BP up right now, giving Mestinon time to get out of my system before trying something else, is the Midodrine.

Have you been checked for diabetes mellitus?

My cardiac specialist who I saw in October that this has been the worst summer for his patients because of all the days of temps above 90 and high humidity. But I would hate to think about never having another summer. I have learned not to bend at waist to pull weeds from flower bed or to take walks when it's hot/humid outside. I carry my laundry in my arms rather than added weight of basket but DH does have to retrieve things from the bottom of the hamper or the back of the washer sometimes. Some of the faints were due to things that I had done (yet didn't no were 'no nos' yet. And I'm stubbornly independent--so after the spells, I get the lectures from DH and DS. I try not to dwell on what may be as much as try to live today. The future is scarey but tomorrow is promised to no one. I read a post that said something like 'yesterday' is the past. 'Tomorrow' is the future. 'Today' is a gift and is why it is the present.

I agree that views are mixed but with my experience it seems to wax and wane. My current symptoms are not nearly as bebilitating from summer yet the VS jump up and down and I have the exhaustion/shortness of breath with trying to do certain things when initially I felt I might be able to attempt a task. I thought that I'd remebered reading research that mentioned POTS could be as debilitating as CHF. The younger you are when developing (perhaps like childhood asthma), the better your chances for improvement, but the older you get, the more likelihood of 'chronic' with incidents that can be very debilitating. Mine has been a gradual (? 3 year) progression (although I had a few minor symptoms as a child that I never realized stemmed from this). Now I have Orthostatic Hypotension and was told my autonomic nervous system was failing. I retain fluid (although the kidney function is normal and I am sodium restricted), so have added Bumex for that. I was told I would have fewer warnings of faints and that I could anticipate a pacer down the road. With autonomic nervous system failing, I suppose that is a way to say things are chronic, and if chronic, not likely to dissipate. It is cold here now and I haven't had near the experiences that put me in the place of triggers. But my legs hurt so bad when standing or getting out of bed in the morning, and I am on Rx. But I know since I've always run low BP, this is here to stay unless the Rx's can help reduce symptoms/episodes. (I'm in 5th decade of life). This being the case, I still take precautions as best I can.

On the EDS forum I belong to, a similar thing happened to her. She posted about how the therapist had 'lied'. Anyway, here is a link to the follow-up post of how she learned to handle it. I hope it helps. http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/correcting-medical-records/

Thanks for posting. Wish I could have one. I don't seem to be able to keep up on my fluids, yet have to take Bumex for fluid retention. And then the nausea from the gastroparesis or dysautonomia isn't optimal either. I didn't see cost anywhere or where you get the gadget with Rx. I'd be doubtful that my health care plan would cover it as DME.

Welcome and sorry that we meet under these circumstances. I'm fairly new altho my 'neurocardiogenic syncope' started nearly 3 years ago. It was not until this year with more recurrent episodes of near syncope--BP bottoming out and heart rate racing with legs collapsing beneath me. Referral was made by my cardiologist in Mar. 2011 to a cardiac specialist at UTMC as he told me I had POTS. I had been on Mestinon, but doing the least bit of exercise my diastolic was going too high. Cardiologist took me off that and wanted cardiac specialist to figure things out. Saw this specialist in Oct. He now says I have Orthostatic Hypotension (with blood/fluild pooling in my legs) with my autonomic nervous system failing. He told me I should expect fewer and fewer warnings of faint. The 3 times I passed out, once was in unmowed grass (I was outside/hot/trying to push mower uphill), second DH caught me by the head just before it struck the ground, and the third time was at a park (trying to pitch baseball to g-son--guess I bent over 1 too many times). With my POTS and Rx's for 2 1/2 yrs I was to eat and drink salts and fluids. After seen by cardiac specialist my sodium is now restricted. I used to bike 10 miles everyday but after couple close calls once while riding (perhaps leaning forward) and in the dismount and with pushing bike up hill of driveway, I put bike up til they figured this out. Legs felt like lead, no wind (and it didn't seem like my asthma was the culprit). Now after re-conditioning the legs+ building endurance (also have EDS III that affects muscles/veins) in physical therapy aquaciser/treadmil, it is recumbent stationary bike for me now. Specialist had me back on Mestinon and Midodrine to make me hypertensive (still taking the big plunges). Seems now, I can't tolerate the Mestinon--such bad abd. cramping and vomiting I was losing weight and couldn't keep ahead with the fluilds. They're letting the Mestinon get out of my system--stopped it and will later start something else to go with the Midodrine. Specialist told me it may take many trials so I have not given up. I am supposed to do the Rx above knee compression stockings (only I just wear them to places like church and funeral homes, etc.), no bending over at waist or raising/lifting above heart level, no hot showers (and shower in shower chair). I am a bleeder with osteopenia so specialist told me 4th leading cause of death w/ this is from falls. That's why they're trying to get me hypertensive. Still on occassion, I find I may have a swing when the BP drops and I get tachy but mostly now when BP drops, heart rate hangs in low 60s. He told me to anticipate a pacemaker in future as well. I am lucky not to have hurt myself too badly--yet. (I probably just jinxed myself). So for me it's nearly 3 years and we're still working on a 'do-able regimen' for me. If its one thing we learn, it is patience. The people/website here offer great support. I don't mean to sound rude or anything, but I'd think about wearing a helmet (altho I started to do a face dive into out concrete drive, another time DH caught me). My DM had faints but was never dx'd with OH or OI or POTS but she doesn't pursue things and she's on Coumadin--has broken a front tooth in a faint and everything. I hope you have some good, knowledgable doctors experienced in this. I wish you safe journeys.

That is true--they make good leg warmers. My problem is they getting something good to hold them up once they are finally on (a torn ligament from my right thumb and being right handed adds to the difficulty). And you can see the garter belts when wearing fine fabrics. Where did you find elastic bands to hold them up? And do these band constrict the blood flow at that point? I was just curious as I used to wear thigh high hosery. Thanks for sharing.

I just wanted to say that I have several BP devices and stethoscopes. When I was having my near syncopes and not, I would periodically check it with both the wrist cuff and the arm cuff with digital readout (for my own curiosity). They were nearly the same.

I've had the problem at doc's office/ER but it's resolved by warming up my ice cold fingers.

I have the ones my cardiologist ordered and hate them. I have arthritis hands so just to get the foot fitted takes me nearly an hour. I have to wear garter belt to hold mine up and since stores here in boonies don't carry them, I tried those from Jobst (where my first stockings were from), and a smaller narrower but more delicate looking one from Vermont Country Store. I bought the devices and the gloves to help me get them on -- big waste of money. It takes 2 of us to get them off (and I'm petitie). I can get them down to ankles sitting on bed but then I have to have somebody pull, pull, pull (which probably stretches them to be even longer and thinner. I tried knee high compression (doc says thigh high for me) as another option but you could see distinct indentations where the blood/fluid cut off line was. I wear them if I go to church or to a funeral or something like that. And did I mention they are hot--a lot of spandex.

If I am invited to a gathering, I ask the host/hostess if there might be somewhere I could lie down if need be (not that I am planning to but in case). I get migraines and asthma attacks from spicey, strong perfumes and colognes and cigarette smoke. And if there are pets in the house, I tell them that I am so sorry that I will not be able to attend due to health issues (if family--they know that pets, my allergies and chronic sinusitis and migraines spell disaster). Nephew and then niece both got married last fall. For one, I had to drive about 2 hours to the church (warm in church) and then it was hot outside, trying to stand, waiting for bride/groom to exit. The reception was held in something like a very big pole barn and while I had been hungry, I was cold in there and then nauseous with the smell of all the foods on the buffet. I stayed and ate but I'm usually one of the first to leave. The other's was an outdoor wedding and DM wore perfume (me allergic to bees, and all the flowers and that raised my stress level a bit). It was also about an hour's drive to a place I didn't know where I was going either. Then the reception was what was like in a big lodge. The metal chairs are hard on me to sit with hip injury. The legs swell with the driving and sitting. It was really hot and I ate light (nausea) and left 'early' as being in country at dusk with deer, I had the added stress of that. DH never goes to my family's big events so that added more upset. With his family reunions, I just go by whether I'm having a good day or a bad day and how the weather is. Mostly in circumstances, I will say that I will really try, but I can't really plan ahead as I just don't know what the BP will be doing that day. I don't think I've ever offended anyone. I attend a church meeting every other month and I really have to drag myself to it because it takes me til mid-morning/noon to get going and then after the middle of the afternoon, I start to lose the momentum and my cognition seems worse and my body is ready for rest--not the shock of going out like a cold rainy night that we're having now, already having fluid retention that will build as I sit and a bad hip that will be throbbing, and then trying to warm myself up really good when I get home because I cannot fall asleep when I am so cold and my hands and feet already feel like ice. I make myself do something though. If I'm really bad and DH asks me out for coffee w/ friends, I decline but if I'm not quite as bad I will drag myself out to go.

Well it just is up and down. Yesterday I had taken water pill (had to). Today I did not and the BP's been in 120s/80s after I'd been up and about with chores. I imagine that a day like tomorrow when I have to do minutes of a meeting (takes me most of day using my laptop on sofa with feet raised), it will be low again from having to take another water pill for the blood and fluid that pools in my legs from the meeting I go to tonight. Getting up and down/the quick back and forths to bathroom is when it takes the big dipper. I felt a little close call in church but not as close as after therapy a couple of weeks ago. I definitely have had fewer since at least being with Midodrine and cooler weather.

I don't know if you have stores like Big Lots or Aldies--they carry the wrist cuffs a little less than drug store. I have both wrist and arm cuff (feed my arm through the cuff and press a button. It inflates and reads BP and HR digitally). Amazon might be another source to search. I find both devices to read pretty darn close. I did watch something on TV once saying that the store BP machines are not best guide as many have been there forever without calibration. In addition, your body size makes a difference. If you are small you should use a children's cuff. If you consider yourself to be around normal, you should get a regular cuff. If you are obese, you should use a large cuff. I know it sounds confusing but it gives best accuracy.

I think it's part dysautonomia/part Rxs I take to get the BP up/part bleeding disorder but just feels like ice water is running through my veins when the heater isn't running, but when furnace kicks on it's like poof--I can't breath, I get weak (from vasadilitation I suppose). But I'm not outdoors as much in summer so I haven't been in 'situations' as often as in summer that cause the near syncopes or syncopes. Although I must say, it was really, really warm in church this weekend and even though I've been instructed remain seated through services, I still got very warm and lightheaded, tremory. I carry a fan and cold water with me for when spells might hit since I never what to factor in how heavy a coat I need to wait for car to warm up and going out and about and then how warm it may be inside where I go. If I don't go with heavier coat and it's cold out and cool inside where I go, I chill to the bone and shiver. If it is too warm in the place, and I have to rip the coat off fast and lug it around, I usually end up looking for a bench to sit and wait for DH to gather things needed and check out. This summer before seeing cardiac specialist, I got so debilitated from the super hot days (I love the hummingbirds and flower beds, but the bending and stooping and reaching up--the care needed for those things were sometimes more than my stubborn will could bear). I thought that I would wither and die before ever being seen, honestly. When I had follow-up w/ cardiologist + he'd seen how debilitated I'd become he immediately started me on Midodrine and put call into cardiac specialist who got me in quicker. Now it is scarey for me, too facing this winter with these new problems. I know how I would get very near syncopal in church in summer and in winter but I am more indoors once weather turns cold. When I was working, with my fibro/osteo, office would be 62 or 63 degrees when I came in. Honestly. My rheume told me to dress in layers--silk, cotton or capalein (sp?) and wool. That really did help, but I don't dress that way when I'm in my home. If I'm trying to do housework, I get hot fast and take many breaks, turn heat down. If I do recumbent stationary bike--heat has to be down as I heat up really fast. I have to keep my legs up as much as I can and in cold weather I get out the electric throw DH got me about 10 years ago for Christmas. At least it makes the joints hurt less. Sometimes I'll have heating pad on hip or neck and the electric throw. But then if I go to get up from the sofa--watch out Sally

I asked my many doctors when my always fine straight hair was falling out so badly in patches (on no beta-blockers or steroids) if this was from damage to hair root during episodes of profuse sweating with all the near or syncopal events and was told 'no'. I went to hairdresser prepared to get head shaved if needed to try to re-grow as it looked so scraggly. She told me that she sees the problem, it is all these curls. She cut it shorter and I have a head full of curls. I had been on Mestinon but was off it all summer before going in for help. I was also taking skin, nail, hair vitamin and Folic Acid. My PCP checked all vitamin levels and autoimmune stuff she could that were all ok. Hairdresser thinks it's med related. Now that she's cut my hair to suit the curls and I'm off the Mestinon again, I'm hoping that wasn't the one that made my hair curl since it'll be gradual months of scraggly hair to get to grow long enough to style it for my short fine straight hair.

I take showers sitting on shower stool too and only warm not hot showers anymore. Hot showers were one of my pain management tricks before this hit me.

Here is my experience and everybody's will be different. I started out nearly 3 years ago with occasional very near faints for first time ever--only happening maybe once/mo.--after shower, in church, in funeral home. Then on bike with 5 year old g-son that landed me in hospital. Tests being ok except for some B def. corrected, I had TTT (didn't pass out but was told I had neurocardiogenic syncope). Went on to 30 day event monitor at my suggestion to PCP (who had to send me to cardiologist to get ordered). He put me on Rx for some kind of runs of tachycardia about 2 1/2 weeks into the event monitor. Many med changes, more frequent near syncopes over the year to the next year--another TTT (no faint but started me on Florinef) and many med changes, many more freq near syncopes to this spring when BP (when formerly low) was running high (I tracked and printed out using MedHelp.org BP tracker--making notes of events and what I was doing at the time). I would take these to cardio when I'd see him. BP would drop really low and heart rate was really fast. But by spring this year cardio told me I was developing hypertension but that it was not caused by the Midodrine he had me on. He discontinued the Midodrine and referred me to cardiac specialist in dysautonomia. I was off meds all summer and was so debilitated from all the faints and lack of energy. The specialist first took BP sitting and then had me to stand and the BP dropped to criteria of orthostatic hypotension--only now instead of the heart rate going really fast when the BP plunges, it hangs in low 60s. He told me my autonomic nervous system is failing, that I would have fewer warnings of faints and that down the road I would probably need a pacer. I am pooling blood/fluid in my feet, legs (and trunk when semi-reclined or laying) and so whereas I was supposed to eat/drink salt, I have to do an about face and restrict salt. I still have to drink, drink, drink, and use high pressure compression stockings that are a real pain and now take a potent water pill (that makes the BP hang low) so it's a vicious cycle. I do know there are some with hyperadregenergic (sp?) POTS and I think those are the ones whose BPs run hypertensive. I am fairly new to this so still have a lot of questions myself. The goal of my cardiac specialist is to make me hypertensive and then work on the hypertension after it's where he want it. He never distinguished to me anything other than 'had I seen you a year ago I would have concurred with POTS but now you have Orthostatic Hypotension and your autonomic nervous system is failing'.

misstraci. Thank you for your kind words. We can certainly empathize with the frustrations, the aggravations, the stigmas attached, trying to put label of depression or anxiety as a quick answer (which is why I do not go in complaining of depression or anxiety and take no meds). It was a long process with the fibro and some docs still think that's another 'in your head' or 'malingering' thing--nothing real. I agree with Todd--we have to move on in this journey. Forums like this have given great leads in who/where to go but we can't give up the search. I'm just not ready to pursue a neuro in city when I have 2 new hemeoncologists in city about 2 hours from here coming up. I prioritize what is most pressing and what can wait. I've learned to have patience. When we are vailidated by experts who are well versed in our conditions, and can be vindicated, it is rewarding though. My PCP told me she always thought I looked rheumatoid (altho tests were always neg). I told her maybe she was looking at the face/body of EDS. She said 'I don't know. I've never seen it. It's so rare--or maybe it's underdiagnosed'. But she has stayed with me, especially since specialists are so lacking here in the what once was the hog capital of the Buckeye State. I've learned that when I go to a doctor, who has my records, that I still need to ask if that is from the dysautonomia or the EDS or if I can have this with all the drug allergies or with all the other meds I am taking, and ask if it is time for a re-check of something. I usually pose it like 'would there be any beneffit from doing . . .' (mentioning a test) followed by 'since I am having. . .' (mentioning the symptoms). That way it is as if it is their idea and doesn't sting the ego.

Yet another cardiac specialist in dysautonomia who I saw this fall explained to me with my purple and swollen feet (and having EDS) that the vessels and muscles are very very lax from the EDS problems and the hypotonia from the so many days of temperatures above 90 degrees this summer. He told me no hot tubs or hot showers. I had all the glutteal muscles/tendons ripped off my hip bone when I got hit by a car, and fearing to do my treadmil lest the legs collapse under me without warning, he wrote a Rx for me to take to pool or to physical therapy. I chose PT since there is only one public hotel here that will 'rent' you a monthly rate to use (rather high). The YMCA here keeps it's water temp conducive for competetive swimming. I need heat for the fibro and arthritis and the therapist and I were both really cautious in how we began. I did aquaciser treadmil with water almost shoulder high with a safety belt attached at my waist and the therapist holding on to the other end of the gait belt in case I were to go out. I only went 2 days/week--never back to back. The water temp was at about 92-93 degrees and after a while of 'jogging' sometimes it would begin to feel like a sauna. Sweat would pour from me--yet other times I felt invigorated but after I would get home, I was crashed for the rest of the day and sometimes the next. I always checked my BP before going. Days I felt puney and wondered how things would go, might have gone well. I could never know. One day after I was trying to shower and dress (I'd been cramping so bad from the Mestinon), I was puking/hugging the commode while trying to manage to get clothed and stagger to cot to get down before I went down. I would drink big cup ice water before going in and when coming out. I had 3 episodes where I got faint during the 2 months of therapy and my last session I 'walked' 70 min. (he forgot about me in the aquaciser) going 1.9 miles in water and against the jets. He told me that was an all time record and i was 'physically fit' 'could run a marathon' (so I guess he doesn't get it--good days, bad days). And as the sessions got to around the 50 min. mark, my skin started breaking out/itching horribly (despite showering right out of the aquaciser and again at home). I know it was from the chemicals of the pool being infused into the skin. I had PCP give me Diflucan and coupled 3 days of that with 50 mg Benadryl to calm this stuff. After 2 pills of Diflucan, this is the best (and still itches/hivey and rashy) I've been in about 3 weeks. I didn't want to say anything to the therapist as I was afraid he wouldn't let me in the aquaciser and I didn't want to drag this out through the end of the year. I just wanted it behind me. I got in outdoor motel pool (cold) this summer and it just made my joints hurt so bad. Therapists told me I should drive to this other county (over icey/snowy winter roads) to YMCA senior center a couple of times/week that have temp around 88 degrees to do exercise program. If I was exercising that would probably be okay for me after the initial surge of pain going into the water. I am not 'senior' by it's criteria but am disabled. The therapists said that if your doctor writes a Rx for water exercises and that you can show some form of disability (may or may not be needed), they would let you into their classes (another thing I think they don't get--I have osteopenia and should I slip/fall in snow/ice, I'd break a bone. I can't get out to bend over and lift shovelfuls of snow to clear walk/drive. I spend so many days going to doctor appointments not close to home by any means which I pay for dearly with riding being so painful to me with the injuries from the car injury. Those riding days will have me down another day or two. I used to bike 10 miles every day, too, but this spring when the legs were like lead weights and I didn't understand what was happening to me and I got syncopal I suppose from leaning forward or getting too warm, I got a portable stationary bike til they figured things out. This cardiac specialist in dysautonomia tells me no bike for me--only a recumbent stationary bike. He told me that falls are the 4th leading cause of death in elderly and people with this (plus I have the osteopenia and am a bleeder). Maybe start out again doing less time. I think my first session they had me in about 12 minutes (hardly worth the shower before and after), and by the end of 2 mos., up to 70 min (therapist had forgotten about me and only intended me to go 60 min). He had me set at 1.4 miles/hour which felt like a jog but I let the water help me with the ups and downs and he told me 1.9 miles in 70 minutes was great?

My cardio made me go back to my neuro to R/O anything else when he dx'd POTS. I hadn't been there for 6 years as she saw me regularly in trying to control migraines and fibro pain. Actually only good (success) was the DHE infusion for a month when in status migrainus for 2 months. When I returned for this visit (6 weeks of waiting) the office had not bothered to pull my old records and the neuro could only vaguely remember me. Then she 'had to go check MRI/MRA brain + neck' that was done 2 years earlier when I was hospitalized with syncope and that I told her was interpreted as normal with me to come back for her to see me again, when she told me otherwise she couldn't find anything (altho she had to hold her arm out for me to walk on heels and toes) and I had filled out on their new patient form that I had fine tremoring in the hands, difficulty swallowing, weakness in the legs and cognition problems. She did ask me to let her know whatever the cardiac specialist at UTMC finds out as 'we doctors are always learning'. She also offered to try me on Mestinon (used for Parkinson's?) but I declined saying my cardiologist had me on that but took me off of it and did not want any meds interfering with his eval. I didn't want to go but I didn't want to seem as if I was not compliant (lest why would I not follow my cardiologist's instructions). I loathe going to my endo too. Have been associated with him/loved him when he cared for me with my pituitary surgery--but I think either I got stale or he did. Every time (cardiologist sent me back and PCP tried to send me back) I have to go back, I cringe. I tried another who was only an hour away but he was worse than the one I had. My endo would tell me I needed this test or that (more complex with timing/administration of things/blood draws) but when I would go back he wouldn't mention it and if I asked, he'd say I didn't need it (when nothing had changed). We only have 1 neuro office here. I have so many specialists that are 1,2,5 hr drive (and back) that I hate to keep searching. I was afraid I might be starting Parkinson's or something but was just dismissed as 'normal findings'. So I just always tell DH if I die, have autopsy and if they find this or that--go back and sue that doctor. (And I am not a 'sue' kind of person). I hope you find a good one who takes you seriously. I called my neuro back and asked that she order sitting MRI for my 7mm Chiari I to see if that might be part of this. Her office calls back that my Chiari (supine) wasn't significant so she didn't understand why I needed one--how it would be coded to get it authorized by ins. and even where they do them. I gave her office the Chiari Institutes website and the name of the imaging center 2 hours from here (I'd done my homework) that explains the significance of sitting MRI's. She never called back. I even suggested to her office girl that I might need to seek out a neurologist more experienced with Chiari's and EDS. The girl insisted that I shouldn't do that, that she'd give message to neuro. Neuro never called back (no surprise). When no measures were controlling my migraines, this neuro had kept telling me she was going to inject Botox as soon as approved. Everytime I asked, approval to do procedure was still pending, or they were waiting on the drug rep to come, etc. and never any Botox. I had a neuro I'd loved (altho I find a lot to have superiority complex) who was also with me after pituitary surgery but when our ins. plan changed, their neuro center was not in network. I know what you mean about waste of money but I had to go back to mine to be told she'd looked through 'some' of my old records and reviewed the MRI/MRA and 'nothing'. And when I got there for the first visit she didn't even know why I was there (when my heart doctor in same building had faxed her office his referral--I checked). I'm just happy I didn't have to go to big city to waste those 2 'specialist' co-pays, plus my time and travel. I wish you calm and peace. It's frustrating because who knows our bodies better than ourselves?

I've had workup that was negative but sleep study doctor who ordered the sleep deprived EEG told me that you can still have seizures but unless you are having one at the time the test is taken, the study will be considered as 'not'. I tried to vote 'no' but it kept taking me to an error link (so mine won't be in your stats)