CharmedLinz

I have not ONE recorded note from a Doctor that is completely accurate..........so upsetting!!! As far as getting the changed, NO you can't. It's like Issie said you can fight like crazy and possibly get an "addendum" that sits on top of your file and tells them to read the addendum about "such and such" But the record itself doesn't go away. I was able to get one doctor I saw whose notes had me listed as currently working (when I wasn't and was tryign to get on diability) to amed her notes with an addendum on that page to correct it. even that took almost a month and only happened because a fried of a friend new a social worker who knew the assistant of the doctor. i put in appeal and grievace for one doc I saw because the notes were sooooo wrong, it's been 2 years and I've heard nothing. spent days writing the appeal letter, oh well. not worth the time. I think things will be ok since your child is under age, the recors should be sealed at 18 I think. I also, try to only send what i want, though I do trust my PCP for the most part to send what they think is pertinent with a referral when they do one. My files are literally about 2 reems of paper thick and it just gets to be too much for me. There are still records I don't have and am fighting to get too.

Thank you both for your input. Micheller-- I'm sending you a PM

Thanks LindaJoy, helps a ton to get a feel for how things might go.

I took it for a year as a teenager when I had severe insomnia. It helped for awhile and then started to do what all sleep type things do to me........... Make me crabby, angry, and more moody. Same thing happened to me when I tried: Melatonin, CoQ10, Gaba (not pentin rx, but Gaba the substance in our brains) and all SSRI's. Don't have any idea why, and I don't notice it much because I sleep better. My Mother is the one who notices and says.... "stop taking that stuff". So I do and a couple of weeks later my moods are back to normal, sleeping is worse. Really really makes no sense especially because I'm suspected of having Mito and some of those are in the Mito cocktail. I do have high serotonin levels though consistent with Carcinoid, so who knows if that has any impact.

Hi Sue, More similarities between us in the Endo department again. Your Docs are onto something with no sugar. As a teenager when I had the severe hypoglycemia, way worse than now, our family DO put me on a NO sugar diet, I mean nothing with sugar I became a label reading guru. After a year, no more almost comatose levels of hypo, back then I was hitting 20's and 30's. The lowest I go now is 50's. As far as getting rid of your repro parts, that's what I did last year. I was only 30, but my Docs felt it would help ease my POTS symptoms because I was most symptomatic around me cycles and they were never regular and my Hormone levels were as follows. Estrogen 8 or 9, LOW someone my age should have been in the 100-200 range. Progesterone, Undetectable Testosterone, Undetectable. So the hysterectomy was a chance. My surgeon was glad he did it. Premature ovarian failure, they were shriveled up and cysts everywhere. The put me on Estrogen, the Bio-Identical Patch. He wanted my levels to be in the 40-50 range which would have helped my bones but is still a menopausal level. Even on twice the amount of Estrogen we never got my Estrogen up over 26 and I felt HORRIBLE. Plus it was acting on my mast cells. I was constantly itchy, crabby, moody, bloated. Tried adding progesterone, almost would up in the ER over a dab of cream about an 1/8 of the normal dose. I had my hyster on June 1 and by November 1 I decided no more Estrogen. Now...... I feel better. My symptoms are still horrible, but the ones the Estrogen caused are gone. I don't regret the Hyster because now I don't have the highs and lows like I did. Also since the Hyster and stopping Estrogen........ my blood sugars have been better than ever, doesn't make sense, but even my A1C's are back down to 5.6 where they had creeped up to 5.8 and while on the Estrogen to 6.1. I don't eat flax, but I do take 1 flax oil pill a day. The dose is 3 but I only tolerate 1. I can't tolerate whey protein, never have been able to break it down. No soy either. I deal well with the goat milk protein or the Hemp protein. My pancreas doesn't work right either, and I still have strange glucose reactions. My strangest is to plain old slow cooked in water gluten free oatmeal. Supposed to be great for even diabetics. Raises my glucose to the highest levels, over 200, and plummets down to 50's. Used to be my stand by food, ate it all the time, every day, and now no more.

Just wondering if anyone has been seen in the Neurosciences Department at this clinic/hospital??? They are speaking good things about availble Autonomic Testing.

My Cardios have put in for me to see Dr. Grubb in December, haven't heard from them yet but I know the chances of December aren't good since he's a year out. But I figured if we are going to be there I will try and see some other people that have been on my wish list if we ever got to Ohio. Including a Mito guy who is also a year out. Just for the heck of it I looked at geneticists at Cleveland Clinic and found one that really sounded like she could help me, so I put in a web appt request with all of my history. 36 hours later I got an email saying she reviewed and accepted my case and made an appointment. So I'm wondering.......... For those that have been, will she most likely refer me to other Docs for testing??? For instance she deals with connective tissue disorders which I desperately need diagnosed. So will she have me go somewhere else within the clinic for testing? Does it kind of work like how I've heard Mayo does discussed here??? I don't mind being a guinea pig somewhat but there are things I won't do..... more TTT's , another spinal tap, more vestibular testing. That's why I decided NIH was a no go, because you are basically at their mercy for an unknown amount of time. Any input appreciated!!!

Short answer............ spoons. I know the link to the spoon article is somewhere on here. Too tired to find it at the moment. For the most part though, people just aren't going to understand unless they are living with something chronic that is similar. I think the trick is feeling ok about it yourself. Wish I could offer something encouraging, but I haven't been able to work for 3 years. I'm losing more independance every day and I have not come to terms with a lot of it. Most days now I can't even go out and water my garden for 10 minutes. If I don't limit myself, I pay big time. But I haven't quite convinced my brain yet that I need to limit myself. So I usually over-do and end up a big lump of goo on the sofa. I don't think anyone can really ever understand what another person is going through, because I think most of the time we don't understand it. But I think if we can realize that we have limits and we are ok with that, then we would feel better about things when other people don't understand. That seems to pertain to most things in life. Be ok with who "YOU" are not with who others want you to be. Hope some of this makes sense, I'm tuckered out, and not able to sleep because I basically got squashed like a bug by a nurse some 1500 miles away who had the nerve to speak rudely to me and dash all my hopes of help, all this while she didn't even have all my records or any reason to even be talking to me when she did. See even I do it. Got off the phone with her on Thursday and have been a mess since. Even though I know she was in the wrong, my brain still feels like my hopes got dashed. Hugs to you, and I think you will get better at this as you get older. I know it sounds horrible but I think you have an advantage being young with this disease. Kids (meaning under 18 or frontal lobe not fully developed yet) seem to adapt to things easier. There are things I'm just now figuring out are not normal and are symptoms of my condition, but I didn't realize it because I have viewed them as normal since I was little bitty. I adapted. My Cousin was Dx'ed with POTS and was very close to death at 14 years old. She's now a Trauma nurse, had malignant thyroid cancer 2 years ago. Got married a year later and while she still deals with all the symptoms, she's able to power through most of the time. Me, I've always been somewhat unhealthy, but I was a give 150% type of A personality and all of this is taking a major toll on how I had been living my life. Hopefully I made some kind of sense........ hang in there...... that's all we can do.

Hi Katybug, Yet another thing we share......long lost cousins??? My Cousin with POTS is Kate as well, you don't live in Memphis do you??? LOL Ok anyway, both myself and my Mother have extremely Fibrocystic breasts. I was told my Watkins in Alabama that this is common in Dysautonomia patients. But this could easily be part of a connective tissue disease in my opinion such as EDS. But I also have fibrotic tissue just about everywhere in my torso region, one thing they are trying to figure out. I was told I could try to take Vitamin E and that would help the breast cysts, but then I was told by another Doc to be careful with Vitamin E because it can thin your blood if you take too much.

No ideas as to why, but............ Last year at my check up in Alabama my Doc looked at the month long continuous halter monitor recordings and was stunned and cranky that it had been ignored. I had been told my month long reading was fine. Got all the actuall recordings from the company that recorded it and I had arrythmias everywhere and was Bradycardic almost every night, Tachycardic for no reason all over the place and yup even Brady during the day. My Heart rate during that month, recorded was anywhere from 40-135. The most exertion I did was a stroll in the backyard. I could NOT nor will I ever be able to record when I'm at my most symptomatic which is during and right after showers. I need a waterproof monitor but I guess that doesn't exist....yet. My Doc in Alabama took one look, said that's NOT normal and I have POTS. Not classic Pots but some strange variation. My PCP here has recorded my heart beat as low as 32. That's the lowest I've caught it at home, the highest is 176. My Tilt Table test started at 63, went to 115 when my BP was 40/17 and then as soon as they lowered me my Heart Rate plummeted to 51......I guess that's not normal at all, that landed me in the CCU for 3 hours.

Sorry Issie, should have been more specific. I haven't been to that clinic yet. We got a little side-tracked by more pressing things last year when I filled that out. My PCP spoke with the Doc there who said he would look at my case which is why I filled it out, but right now it's the least of my worries. My Chiari is very borderline, at least laying down on MRI it is.

Not to take away from any Children that have been born to members on this forum, or any child, including myself (I'm 31 now)...... But I have a different take on this question that you pose. I don't know you or your situation at all so I take full responsibility if what I'm about to say makes you or anyone else hate my guts. Along with thinking about what the pregnancy might do to your body, I hope you are thinking about the consequence to the child. As the posters above had said, some of their children did NOT have an easy entrance into this world. Neither did I. I have some type of Traumatic birth defect, nothing has been confirmed but most of my problems seem to have come from birth. This seems to be genetic in my family, I have a first Cousin with POTS and most of my symptoms, her Brother isn't completely healthy either, neither is his new 1 year old son. We suspect it came from my Grandfather who we believe had Marfan's or some type of Connective Tissue Disease and he also had severe Ankylosing Spondylitis. My Mother has a diminished form of POTS, she outgrew most of her symptoms as a child, but only after almost dying 3 times. Of SIDS, Rheumatic Fever, and an Internal Hemorage. I was born blue with hypoxia and have birth defects in the form of a malformed foot and weakness on my left side. Like I said we don't know yet how this all connects, but I'm 31 and my body systems are shutting down supposedly from something auto-immune, connective tissue, genetic or all of the above. There was a point in my life when I wanted kids someday, and then 3 years ago I got so sick I could not work. Now there is NO way I would ever even take the chance of passing this on to another human being. I hope this just gets taken as something to ponder, as that's all I'm saying......ponder long and hard. My Mother has told me looking back had she known all she knows now about our family medical problems, she would NOT have had me. She loves me and doesn't regret having me, but she does regret having me just for "wanting a baby". I've always been of the opinion that we as Humans shouldn't just breed because we can. We have the intelligence and knowledge to know that sometimes it's better not to do things even if it's something we really want, life isn't fair. We have gained the ability to know families that carry Cancer genes, Huntington's Disease, and a probably a million others that I know nothing about. If we have the knowledge to know we can pass those things on, should we still willingly pass them on?? Again, like I said I don't know your family history, so for all I know you have POTS as the result of a Virus, like a lot of people do. So I'm not saying you shouldn't have children of your own. I'm not taking anything away from anybody on this forum with Children, either adolescent or grown, every life is worth something, every life is special. I just know for me personally at 31 years old, looking back on my life, my choice would have been that I never be born. I've had a good life, I enjoy the planet and the things around me. But I'm not Living, I'm sick and suffering, and doing nothing other than just mere surviving, and trying desperately to find even one tiny thing to make me feel better enough to even have one decent day with no end in sight. I'm sorry if this HiJacks your thread, this is my own personal opinion and it bares no weight to my feelings towards you or any other person on this forum. I am not a judgemental person, and I respect everyone's rights to make their own decisions, regardless of what those are, I support every person on this forum and every person that I know and/or talk to. Hugs, I feel your frustration and difficulties.

I agree with Katie a lot over lap. That being said I DO have a borderline Chiari Malformation. I'm the one that just voted..... over 60 of the symptoms. Here is a link to a questionaire I filled out last year for my PCP when he wanted to send me to a Chiari clinic. It's more for interest than anything else. I don't think all my symptoms are caused by my Chiari. I now think maybe CCSVI since it's been mentioned here, but my PCP has long thought I had benign pressure Hydrocephalus.....pretty much seems the same. My Cardio has long thought I have Concussion Syndrome..........same symptoms. UGH UGH UGH Go to this link and click on the 2nd form for the "Questionaire" http://chiaricare.com/Consultation/Patient-Forms.aspx

Christy, Soooo glad it went well.....been crossing my fingers for you. What does the PGD2 stand for??? Also the Heparin level, was that just off a basic blood draw?? It's probably in some of your posts but what have your son's tryptase levels been like? I know I can get a Heparin drawn just want to know if it's a basic draw. Let us know how the aspirin goes. I love hearing that they are within 10 years of actual tests, that's better than 50 years or the dreaded "I don't know".

First MRI with Contrast I had a horrible reaction, it causes your blood vessels to dilate. So I got typical fast heartbeat, pass outy, can't breathe thing. That was before my POTS Dx and before I started Florinef. Had another last year with contrast and no reaction, I think the Florinef helps enough to keep my reaction down. Drink A LOT of water to flush you system after. I have a borderline chiari malformation. Radiologists have not identified it on 4 MRI's, but 2 Neuros have as well as my Neuro ENT Doc. It's very borderline so nobody worries about it, but it gave me major problems after a spinal tap that I never should have had. Like Sue said, I haven't had a standing MRI either so who knows what gravity does. I'm looking into a specialty clinic for my facial Neuralgia that also deals with Chiari...... so maybe, we'll see.

Oh I can so relate to all 3 of you......... I've just turned 31, and since I had to quit working 3 years ago I've collected diagnoses like candy. Dysautonomia, POTS, NCS Small Fiber Neuropathy Chiari Malformation (borderline) Mast Cell Disorder Vestibular Abnormality Facial Neuralgia PolyEndocrine Failure (not confirmed) Thyroiditis Mitochondrial probem (possible) all suspected to be some unknown auto-immue or genetic disease. I try to tell myself that they didn't know what Lupus was or AIDS or Lymes disease was all that long ago. So maybe they will figure this out before I'm gone, but at this rate I'll be gone before even my Parents. I have a great mind, in a body that doesn't work. As far as kids go........I get the question a lot because I had a hysterectomy last year to try and stabilize some of my symptoms. People seem to feel bad for me when they hear that. Even if I wanted kids and could still have them...... I wouldn't..... this stuff runs in my family, and I wouldn't even chance passing all this on to my worst enemy, it's nothing but pure torture and suffering.

Firewatcher is right........research tests. My first inclination to answering your question.... "what to expect at an Endo" was to be flat out Honest and say "Don't expect much" I've seen 6 and not 1 had the same opinion as another. I hope you have better luck. It took my Cortisol dropping to 1 after surgery for any of them to go from "you might be adrenally insufficient" "your tests are in the gray zone" to..... Oh yup you definitely have adrenal problems, but it's coming from your Pituitary. My PCP found my PolyEndocrine Failure possible DX. Finally saw a Thyroid surgeon last week, my 2nd one, that was appalled and shocked by my labs and what has just been shoved aside and ignored. SO I think it's like the rest of Doctors........... There are good ones out there, you just have to find the ones that really want to help and don't mind looking for Zebras instead of staying in their nice comfy box and only looking for ordinary horses. One thing I can tell you for sure............. You can NOT have an accurate Aldosterone test while on any amount of Florinef as it replaces the effects of Aldosterone in the body. And the only way to get an accurate Cortisol reading is to have your fasting blood drawn between 7 & 8 AM. Like Issie said about Florinef and adrenals. The theory is that your adrenals should be able to pick back up if you are off but not if your Adrenals aren't healthy. My aldosterone and renin levels via 2 accurate tests before starting Florinef were way under level, so if I went off Florinef my adrenals would not pick back up. I have missed a dose a couple different days for tests and started spiraling down by noon that same day, my body can't deal without it. I believe this is why it doesn't help my BP much either, because my body is using it for other things. I really wish you luck, do your research, don't blindly trust what any Doctor says. Sorry to sound negative, but I've found if I go in hoping for too much, I come out being more disappointed.

Nope not a redhead, though there are hints of red. I was blonde blonde as a child, now a dirty blond with hints toward red. However my Great-Grandmother from Scotland was a red head and I could be her identical twin, it's freaky to the whole family. Other than my hair, I'm so pale and thin skinned that you can see every vein I have. I think my sedation issues are probably from a connective tissue disease. Dentists can't numb me either and apparently that points CTD.

I don't have much reaction at all to sedation, one of my oddities that gets shocked Doctor faces. They gave me so much Versed for my colonoscopy and endoscopy that my GI doc finally said no more, because my BP was starting to drop even though they had saline wide open. I told him I was fine, just stick the screen where I could see it. Really wasn't that bad, I remember the entire thing. Only one real painful part, but it felt just like a really bad menstrual cramp for about 10 seconds and the rest was just uncomfy. If you have a really good Doc I can see getting it done totally unsedated. I really think the sedation is more to keep people calm more than anything else, it's easier for the Docs that way to do their jobs.

Had to quit work, which meant quit driving in 2009. As of February of this year I was told NO more driving by my Docs and cannot renew my license. Even though I hadn't driven since 2009 for safety, hearing NO still hurt the dignity, so I understand. Mine is vision related too..... see the thread I started titled "Katybug~your my hero".... My symptoms and how she describes hers is why I quit driving. I have always loved to drive and drove for a living. I grew up wanting to be a big-rig driver, strange dream for a kid right. Knee injury prevented that big-rig over the road part, my best friend is living that for me and I get to go for rides when I visit her out of state. So I did all kinds of other driving jobs and loved every minute until I started getting really sick. I worked night shifts mostly too as I used to see better at night but that went out the window the same as everything else driving. I do think working long shifts and nights contributed to getting me to the point of so sick I had to stop working. I had been on and off sickly for years and I think I just pushed my body over the limit.

Oh and I should add, I couldn't tolerate Midodrine because of the migraine like headaches it induced. As for potassium, a lot of people have problems keeping it up while on Florinef. I know several people that have to have RX potassium while on Florinef. I get mine checked whenever other bloodwork is ordered and I have never had a problem with my potassium. Not real sure why, but I've been on Florinef for 3 years, as much as 3 tabs a day at one point (only a week this high) and my potassium is still fine. In fact a couple weeks ago it's the highest it's ever been at the top of the range. I do take a 99mg Potassium Asporotate pill daily. Eat at least 1 banana a day. Drink Coconut water whenever I feel dehydrated. And I take magnesium, which if you look it up somehow acts to balance potassium, though the way this happens is a little confusing.

Hmmm, Magnesium is actually supposed to make you calm. I take it every night before bed, in powder citrate form. However I don't take it with calcium as I have some weird PTH calcium absorption problem. I take Vitamin D in the morning. Did you take it along with anything else..... food, other meds, etc???

The following is just how I started Florinef after doing a bunch of research because I am highly sensitive to starting drugs. Do some googling for adrenal information, or a website called stopthethyroidmadness has a good article about the best way to get on Florinef. I have extreme reactions to small amounts of meds, so it was scary thing for me to start. But my Cousin with POTS had been on it for 10 years and told me how much it helped. Here is what I did...... Take in the morning not in evening because it will effect sleep. I did 1/4 tablet every morning for 2 weeks. Then 1/2 tablet every morning for 10 days. Then 1/2 tablet in the morning, and 1/4 tablet at 2pm for 10 days. Then 1/2 tablet in the morning, and a 1/2 tablet at 2 pm for a month. Docs said 1 tablet daily might be enough, it wasn't, so after that month......... I did 1 tablet in the morning, and a 1/2 tablet at 2 pm. I did that for a long time and then tried 2 tablets via Docs orders, it was too much. Ever since I've been doing the 1 in the AM and 1/2 in early afternoon. Mainly it helps my Polyuria and Polydipsia and my cold hands and feet.

Can someone explain how you know you are "flushing"??? I have always had temperature fluctuations but in February they changed and now I'm either bone-chilling to the core cold, with NO goosebumps, but warm liquids, heating pads, nothing helps. Then I will go immediately into being sooo horribly hot that I have to put my head between my knees to keep from both passing out and puking. Then back again to the cold. There is NO in between. I was chalking this up to my Small Fiber Neuropathy getting worse since everything else got worse at the same time. Thought my temperature regulator has just been destroyed. Now I'm wondering if it could be partially flushing??? I asked my Mother to look at me during a hot episode and she said my sking wasn't any different than my normal patchy red, purple, blue ,etc. And I don't sweat during them unless I'm standing up when one happens, but then I think I sweat because I'm going to wind up flat on the ground from passing out. My BP seems to drop severely now during these. My PCP confirmed these are NOT hot flashes, as they don't make sense of how quickly I went into these crazy freezing to burning and back again with nothing in between. None like he's seen anyway and my temp is anywhere from 92 to 99. So how does flushing feel to some of you???

Wish I could explain mine by Gluten. But not only have I been extensively tested for Gluten sensitivites (blood, DNA, Biopsies) that were all negative........ I've also been 99% gluten free for well over a year. As well as 99% Vegetarian. I've also had extensive food sensitivity testing and have NO reaction to any food allergies. Would be sooooo nice if just changing what I ate made me feel better. I'm glad it works for some, but I'm afraid short of living a sterile plastic bubble nothing food or environmentally different will change my symptoms. Some meds work a little but not completely. I've even changed everything around me just in case. I don't eat anything out of cans or bottles that have BPA. I don't use any soaps or lotions or anything topical that has sulfites or anything I can't pronounce. I even stopped using antibacterial soap because of the bad effects that have been reported about the chemical used to make it antibacterial.