CharmedLinz

You might already know about this stuff, but I just found it locally yesterday at my Whole Foods. We all seem to struggle with GI issues off and on. My biggest problem right now is with my teeth problems everything needs to be squishy or liquid. I was shocked to find this yesterday at my Whole Foods in the aisle with the other Aseptic drinks. I love chocolate almond milk, and just recently found FlaxMilk, yummy. Anyhow there was.... B.R.A.T. in original and vanilla. Bought one of each, a little pricey $3.99 each for the big square aseptic packs. The vanilla is pretty tasty. I can do the original, but think it would be better mixed with something or even cooking with it a little. The website says they have chocolate, yummy, just have to find it here or order it. Check it out....... http://www.bratdiet.org/

Great links guys, thanks! Sue---- My Calcium has been normal, low, and high, all over the map. As high as 10.7 and as low as 6.9, all while my PTH is undetectable.

I had to take the RX 50,000 once a week for 3 months when all this started, my levels started out at 17. Now almost 3 years later I take 2000 units a day and have been checked several times. Levels have been consistenly from 45 to 65 ever since. I didn't notice any difference at all. While I think we should all have good Vitamin D levels I did get a totally different opinion from one doc I saw and it's something I do think about and tried her suggestion. I saw a Nephrologist, one of the top one's in my city, because I have was having protein in my urine and whacky calcium and very low PTH, and a bit of High Phosphorus. Other docs said I might have a calcium channel problem so off to the kidney doctor. She thought any little kidney stress I have is secondary to the Dysautonomia or Autoimmune problems yet to be DX'ed. But she also had a new spin on Vit D and she showed me some research showing that they are now finding that "too Much" Vitamin D is causing magnesium, potassium, and phosphorus problems which in turn causes PTH to drop to maintain calcium. She didn't like my Vitamin D levels being at 60 at the time. Told me to stop the Vitamin D to see if in turn the calcium and PTH would normalize. Didn't really make sense at the time, this was over a year ago. Did it anyway, stopped the Vitamin D for a month. Vitamin D dropped to 38. Phosphorus did normalize, went back down from being a little high. Magnesium stayed the same. Potassium actually rose a little which is a good thing since I'm on Florinef. PTH stayed non-detectable and Calcium was even more whacky than it had been. So back on the Vitamin D, took 2 months but levels went back up into the 60's where all my other Docs like it to be. Every other problem is all still there, including the PTH problem which has yet to really be figured out. So I take the 2000 a day because I feel like it's probably better for my bones and heart to be in the 60's rather than the 30's or less.

Well Halcion did NOT work, not even slightly!!! I couldn't believe it, the Dental office couldn't believe it. The highest dose the dentist gave me the maximum dose he is allowed to prescribe and naughta, nothing. 8 Ampules of numbing agents, again maximum allowed, and he barely got through 2 root canals. He is writing up his findings to support everyone else that I need to see a sub-specialty Neurologist to deal with Neuralgia pertaining to some part of this disease. Did first 2 on Tuesday, went back Thursday for the other 2. Valium for the ones yesterday, 35 mg, and I was barely relaxed. He did one shot of epinephrine based numbing and I went tachy, so he went back to the other stuff. He was pretty surprised to find the insides of the teeth to be extremely inflamed. He thinks the nerve problem was actually negatively impacting my teeth. Yet another possible part to this body wide problem we all face.

I never had what you would call extreme exercise endurance. However I did competitively ride Hunter Jumper and Dressage horses from age 7 to 16 and that is pretty grueling, at least 5 days a week, and during shows it's pretty constant 4 days, up at 3AM bed around midnight. After that I went through several years where I rode a stationary recumbent bike for at least an hour a day, everyday. Then I turned to walking 2 times a day, 3 miles each time. From ages 19 to 28 all of the jobs I worked were physically challenging. The most of which was delivering luggage for an airport, graveyard shift. Usually only got 4 hours of sleep a day, sometimes less. Was moving 75 pound luggage constantly. Most of my jobs were on-call 24/7 to phone answering and working graveyard shifts. My Cousin with POTS, diagnosed at age 14 had been a very heavy soccer player.

Had to vote partially. I worked as a Veterinary Technician. I also worked as a courier for Bloodwork and Labwork for several large laboratories and was in direct contact with both animal and human bodily fluids.

Get used to it............bad answer I know but it's all I got. Nausea is my one continuous symptom and has been for years, even before I got so bad I couldn't work. I mostly use Phenergan and combine it with Benadryl. Ranitidine 2xday too. I also take aloe vera which has helped a little and would probably be good for your GERD. Other than that...........Lots of chamomile tea, sucking on ginger candy.

Unfortuneately this is a brand new dentist for me........Endodontist actually. My normal Dentist retired in December, but she recomended this Endodontist. I really wanted the oral surgeon I've seen to treat me as he knows more about Dysautonomia than any of my Doctors, but he won't do anything because he thinks it's Neuralgia from SFN. Doing nothing is not an option at this point, so I'm putting the tiny bit of trust I have on this Endodontist.

As far as I know the CT of adrenals is usually done with contrast, better view. I had one with the contrast and was nervous as well because I had a reaction the contrast for MRI. I didn't have any reaction to the CT contrast except for a slightly upset tummy the rest of the day. Not nausea ( I always have that) but some actual belly pain, but it was minor, kind of like menstrual cramps. It went away as soon as I went to the restroom. My doc said that was odd, but I'm odd. It can be disconcerting the CT contrast especially if you get a tech that doesn't tell you what to expect. Make sure you pee first. I was on the table before I was told that when they inject the stuff you will feel like you are peeing, but you really aren't, it's normal. It feels really strange!!!

Thanks for the input. Sue---- I need sedation for the dentist for both reasons. I never used to have a dental phobia as a child....then I got braces and started to have a problem. Had to have a bridge about 18 months ago and because of some of the things done and problems since, if I'm not sedated someone is going to accidentally be punched by a flailing fist. Also need it for the shots. I am very hard to numb completely and they have to start shallow and go deep and do the front and back of my teeth. Then I need it for the sounds of the equipment and feeling of vibrations. It's a phobia pure and simple. I'm not a baby about pain, and most medical things don't bother me at all. I was a vet tech. Then a courier for blood. I help the girls draw my blood, as I usually get at least 10 tubes and I hold my owe butterfly. Had a spinal tap unsedated, no problem. Was wide awake for my entire Endoscopy and Colonoscopy, no problem. Just my mouth I have an issue with.

Sue---- No problem, I don't have my lab right now to look at the exact numbers. But I was drawn every half hour for 3 hours. my baseline Insulin was fine and after that it was bad. At every check my level was double what the highest normal level was. So I think one of the times the highest normal was 155 and mine was 310....something like that. I'll get out my labs for exact numbers tomorrow.

INFJ now. I've never taken this before, it's very interesting. 67% intuitive, that's about right. I can say just from looking back the one big thing that has changed in my personality is anger. I was never an angry person and I didn't have a temper. Now I will readily admit that I'm angry at the world, at humanity, at what we have done to this earth and each other.

Thanks Issie, that's very helpful......and comforting, I'd rather not remember the 4 root canals coming. Do you by any chance remember the dose you took?

Yet again, nice to know I'm not alone............... I keep saying that the next time I hear the words,...."So what brings you hear today", or "what can I do for you"..........I'm just going to laugh, stand up, and walk out. I'm soooo sick of repeating the whole thing over and over. I really LOVE the Neurologists who immediately say they can't do anything within 5 minutes of being in the room. When you tell them, well I have 6 other doctors who think I need a Neurologist, they ask why?????? They all want to pass the buck to someone else and around and around we go.

Lots of Thyroid issues in my family. My Dysauto doc, Watkins at Birmingham, Alabama thinks there is a very strong connection, he says there is research being done. He has a 12 year old patient with thyroid cancer, and all together about 3/4 of his patients have thyroid issues. My Cousin, who was the first diagnosed in our family with POTS at age 14, fifteen years ago, diagnosed by Watkins, got malignant Thyroid Cancer 2 years ago. Thyroid removed, but now 2 years later she still has markers. They are re-doing her radioactive iodine treatment as we speak. My levels all come back ok....TSH a little low, T4 and T3 a little low........no antibodies. Thyroid is enlarging and on Ultrasound looks very Hashimoto like and is full of cysts. Saw a thyroid surgeon who said I was more than likely at the beginning stages of Hashi's. I've had HypoT Symptoms since I was a teenager. I'm on Armour now. Rest of the family....... Mom's side........her Father was HypoT, and a great Aunt who had Hashi's since her early 20's. Another great Aunt had Addison's. Dad is HypoT and 6 females on his side of the family have thyroid nodules, all but 2 are deceased. 2 of the deceased had their thyroids removed back in the 50's, know one knows any details. Hope this helps.

Mine was done because of extremely high Insulin levels during a 3 hour glucose tolerance test. Just an FYI, I have had, literally, every scan nuclear medicine offers, or close to it. Good thing the techs are cute and funny in nuclear medicine here, I've spent A LOT of time there in the last 2 years.....LOL, They know me by name, birthdate and all. There are NO side effects to radio active tracers at all, unless you have an allergic reaction. It's the drugs they give with them that you can have a reaction too. I also have some type of Mast Cell Disorder, or MCAD and High histamine levels. On enough antihistamines to subdue a horse. The only reaction I had to the Ocreatide was that it stopped my chronic diahrea cold for 5 days, sorry........I know TMI. It's a 3 day test. First day, injection, 4 hours later scanned for 45 minutes. Next day another scan, 3rd day the last scan which is the shortest. They scan mostly from your neck down past your hips unless your doc asks for a full body. They also do a couple of scans over your head and it includes your thyroid. Mine showed........nothing. Easy test though. Lay still and sleep, pretty much it.

I just had one in November. Give me few minutes and i'll type up my experience, will take a bit. quick answer, it was no big deal

Hi All, Well I know we all do better without Dental work, but this can't be avoided unfortunately. Wondering your experiences with Halcion??? I've never used it before but know it's in the class of the Benzo's which is the one class of drug I don't have much reaction too. I've been told it's probably because of the HyperAdrenergic stuff that the Benzo's just don't hit me hard. All other meds because of Mast Cell stuff hit me like a ton of bricks, I take baby doses of everything. I take Klonopin everyday which barely takes the edge off all the Adrenaline. All previous Dentist stuff, last was June 2010, they've had to give me 30MG of Valium just to get near me. That much valium makes me slightly Tipsy and I walk out of the office fine. Everyone I tell about the 30mg of valium is shocked. Then they become more shocked when I tell them I was awake through my Endoscopy and Colonoscopy because the Versed didn't work. My GI kept pushing versed until my Blood Pressure was dangerously low. Told me he couldn't give me anymore, I said I was fine as long as I could watch the screen. Again I was tipsy but remember every detail of the whole thing. Cocktail before surgery also had to be doubled by the anasthesia doc as I was still wide awake and talking to the nurses when they wheeled me in to the operating room. So what should I expect from the Halcion. He presribed it to me to be taken as 3 tablets (0.125mg/each) one hour before appt, and then 1 more tablet when I arrive at the office. Should I ask for more??? Thanks for any input!!!

Well it's suspected in me that all of my multiple problems spanning multiple systems and organs is auto immune caused. I've taken high dose fish oil plus krill oil plus flax oil on the advice of many of my doctors and my own research and I've really seen no difference at all. I've taken fish oil for at least 10 years, but only high dose for 2 years since I got sooo sick. I'm actually shocked that it hasn't helped really anything that I can tell. My dog is on high levels for her allergies and it's helped her out in the extreme. It's almost completely eliminated her need for steroids to control her atopic dermatitis. It hasn't helped my allergies at all. It also has done nothing for my skin, nails, or hair. And my cholesterol is at an all time high. I'll keep taking it though, like I do everything. It doesn't give me side effects which is rare, it's supposed to be helping, so guess it doesn't hurt to keep taking it.

Thanks to Chaos for alerting me on this post. I am HLA-B27 positive, with POTS, Mitral Valve Regurge, Dysautonomia (Neuro Cardiogenic Syncope), MCAD (?) plus High Histamine, mild Chiari Malformation, and unknown Autoimmune disease that is also causing failure of my endocrine system. Probably SMN but no one here can test for it. Too many other things to mention. I don't have any evidence of AS. My Grandfather had an extremely bad case of AS that made him retire in his 30's. He was B27 positive. He had all aspects of AS to the extreme. We all believe he had Dysauto and he was also very Marfan like. They also found a congenital heart defect when he had a quadruple bi-pass in his seventies. He passed in 2009 of bone cancer. His Daughter, my Mother, is also B27 positive, has no signs of AS but has had bouts of the Eyerhitis, or Uveitis that goes with it. She was very POTS like as a child and teenager. As an adult has managed fine, though she still carries a fairly high heart rate and dizzies easily. I have 2 cousins on the same side of the family who are siblings. Male older sibling has Mitral Valve Prolapse and Regurge but has never been diagnosed with POTS or dysauto and has not been tested for B27. His sister has an extreme case of POTS that started for her at age 13. She is now 28 still has all symptoms and is on all the same meds we all are. She is struggling but functioning. She also got thyroid cancer 2 years ago and had her thyroid removed. She is also B27 positive. We are all very Marfan like in my opinion. Tall with very long limbs, though none of us has had any genetic testing.

Hi AZ Girl, Thank you for all the wonderful input, I really truly appreciate it. May I ask.....what would a Hematologist be able to do in your opinion?? I have thought about asking my PCP for a referral to one, just because that's about the only specialist I haven't seen, and maybe it would be new eyes on the case. I would LOVE to see a Geneticist, part of why I'm hoping the Mayo works out. Unfortuneately and isn't this sad....we only have one Geneticist here, who is a pediatric geneticist. I saw her for a consult appointment, that took 3 of my docs and 6 months to get my insurance to approve. All she was allowed to do for me was rule out Marfan's. Like I said, she was very concerned about my birth problems and left sided weakness and said it sounded Neuromuscular to her. All 3 Neuro's I've seen have completely dismissed my left sided weakness from birth, and by completely dismiss I mean....no tests on that side of my body and when we ask if it could have anything to do with all of my other illness they all say "NO". It's utterly ridculous. The spinal tap was totally normal, so no MS.....yet everyone thinks the lesions are strange. My Rheumy is great....though not my favorite Doctor......but he's the one that seems to know how to get things ordered, so will stick with him until he totally gives up. Endocrinologists are another bad set here.......I've seen 5. Finally liked the last one some what and she moved practices and I can't see her anymore. I've found with the Endo's that if you don't fit in the perfect little box they just don't want to see you. Luckily I have an awesome PCP who works his tushy off for me.....most of the time anyway. I do have a health care coordinator nurse appointmed to me through my insurance. She just does the squeeky wheel thing. Can't attend appts with me. How did you go about finding a patient advocate? If I do get to see your Doc and I can get DX'ed and a treatment plan that included IVIG, I do know that our infusion center here is great and they do IVIG. I also believe our great Hematology/Oncology place here does IVIG and they have stellar reputations as well. Meanwhile at least my GI Doc hasn't given up and at last appt he said if nothing else gets done.....he will be glad to prescribe medicinal marijuana for me......that would be funny!!!! I think I'm one of the few people I know who has NEVER even tried it, ever! My parents are true hippies and can't believe it. I told my Doc I wouldn't smoke it, he said I could stick in my ice cream or brownies. I think I'd rather try the IVIG!!! Latest test he ordered just came back......more strangeness...........he ordered 3 types of hydrogen breath tests. The first was lactose, done on Tuesday, results came back showing I had a high baseline hydrogen meaning I didn't fast properly, which I actually over-did, 13 hours instead of just 10. Thanks as always for the presence and words of everyone here.

sorry in advance for the horrible typing and grammar skills. AZ Girl tried to PM you but your box is full, so since i already typed it all out i will just share it here, hopefully it will link more of us even closer together. Thanks again for posting all of your journey, I have printed it out and will be handing it to my Primary as he reads everything I give him. To answer your questions....I'm pretty much out of Neurologists here to try, at least under my current insurance. I've been to 3. The first one did absolutely nothing! 2cd one has a bad rep and we took a friend with us who was an Internist, so we got better treatment than I think we would have otherwise (Mom and I). This one looked at my first MRI and said I have a borderline Chiari Malformation, and I also have a lot of white matter lesions that no one has been able to explain. He humored me by doing EMG (just of my right arm) which was normal on computer but I couldn't feel, he didn't believe me. Also did EEG and the shock one to the ankle. Said everything was fine on the computer and sent me on my way. I am seeing a Rheum because my Grandfather had Ankylosing Spondylitis and I'm positive for the HLAB27 gene as is my Mother and she did have Uveitis at one point and we believe she had Dysauto and POTS as a child that has somewhat resolved. The Rheumy ran full x-rays and AI panels which were negative. This Rheumy seems to be able to get all the things done that none of the other doctors know how to order here. He was not impressed with my treatment by the Neuros and ordered a spinal tap. Which showed nothing, except that people with Chiari Malformations shouldn't have spinal taps. Bedridden for 3 weeks with 2 trips to ER, scheduled for blood patch which spine doc said couldn't do because of Chiari. So Rheumy sent me to last Neuro 2 weeks ago or so, hysterical, would NOT even glance at symptoms or MRI's but did the EMG of my legs. Shock tests and needles all look fine on screen but I literally cannot feel the shocks or the needles at all. He said i need a subspecialist and to get to mayo because there are none here. Totally dismissed my left leg, as all the Neuros do. I've seen one geneticist as a consult only to rule out Marfan's. She was very concerned about my left leg. I was stuck during birth and deprived oxygen and have horrible left sided weakness and muscle deformity in ankle/foot. Combined with other symptoms I'm starting to think maybe Marie Charcot Toothe disease, but that may be a stretch. Genetecist suggested probably mito issues too. I also have vestibular problems, 2 type of Nystagmus and probably inner central right ear defect. Another flake of a doctor, only Neurotologist in the state, got the Videostinography and he's done with me. Also I do have a great allergist who is doing all he can, knows I have mast cell issues, just not sure what exactly. Rheumy is the one that will order biopsies f need be he's the only one here who knows how to order them. Other problems.... looks like polyendocrine failure, I have adrenal insufficiency (pituitary based), thyroid is full of cysts, female hormones are practically non-existent. Had hysterectomy in June, surgeon was shocked to find my ovaries shriveled up and all of my abdominal tissue was fibrotic to the point he had to cut it away from my bladder so he could do the surgery. Also had adhesions and I've never had surgery or injury. Primary doc and GI really think that has to be AI and Connective Tissue. As for the dysauto....major family history, cousin was diagnosed at 14 by watkins in alabama with POTS and MVP, she is 28 now, 2 years younger than me and got malignant thyroid cancer 2 years ago. My pcp thinks i have POTS, cardio thinks just OH and Neuro Syncope. GI has done every test known to man and only found that my Gallbladder doesn't work great. My PTH is undetectable we saw thyroid surgeon who came from mayo, she said get to mayo, I live in a crappy place for specialists, her words. also have unexplained high growth hormone, high eosinophils, and high platelets. sometimes low red blood cells and anemia, white cells are always ok. glucose is also a big issue and after reading your story my gyno is ordering tolerance test with insulin checks too. case is at mayo rochester being looked at by the research team, but doc says not to get ,my hopes up. your doc sounds like he may be my answer after my medicare kicks in december. i probably left some things out but as im sure you can tell my typing has gotten prgressvely worse even throough this email. finger strength and coordination gets worse almost daily. will be able to type more after some rest.

Don't be afraid of the Atarax! However make sure you ask for the capsule version. Atarax is actually Hydroxizine and it comes in an HCI or a Pamoate type. The HCI type is a little flat tablet that tastes horrible and I'm pretty sure it's the additives but I don't break it down right and it doesn't work well. The Pamoate version is a capsule and works great. When nothing else works, this stuff does the trick, and I have taken 50mg. at a time during bad episodes. Anti-Histamines are about the only thing I don't have a reaction too. Here is my typical Mast Cell Med day..... 10mg Zyrtec in the AM 150mg Ranitidine 2x day. then from evening until bedtime 75mg of Benadryl, 25mg of Promethazine, and 25mg of Hydroxyzine. That's just a normal everyday what I have to take, on certain days more Benadryl or more Hydroxyzine is thrown in. I mainly take the Promethazine for nausea even though it is an antihistamine. Some days I switch the Promethazine for Zofran, just depends on the day.

Yup it's all very confusing and myself like you seem to have the exact opposite reaction to drugs than what is supposed to happen. I think I mis-spoke by saying "the above people"..... I meant he said that when some people have types of allergic reactions to hormone intake that he knows of some people that in that situation getting off of Estrogen and strictly onto progesterone can right things. Then again he also said he's heard of some people being allergic to progesterone. Unfortunately there aren't any tests to see if you are allergic to your own hormones....I asked! If only it were that simple. I keep relating myself to a pet, I wish my body could say what's wrong with it exactly instead of keeping my head guessing. All I can say for now is that I take something and my body goes....."what am I am supposed to do with that?" So it rebels. UGH UGH UGH

WOW, thanks for all the awesome information!!! I've spoken with you in the past about your Doctor and may be able to head that way after December. My insurance now won't cover anything out of state so my case is up at the Mayo in Rochester for research evaluation, but that doesn't look too promising. After December I will be on Medicare so maybe then I can actually get some help. Just saw another Neurologist who shook his head, wouldn't even look at my symptom list or MRI's, blatantly did EMR and EMG on my legs, to which he said before hand he didn't know why he was doing that he knew I had neuropathy. Then as he was doing the shocks and watching the screen he was confused as everything looked normal. Though I couldn't feel any of it. So during the EMG, everything looked and sounded normal but I couldn't feel the needles know matter how far he stuck them in or where. He said I have Sensory Polyneuropathy....nothing he can do and he doesn't deal with autonomic issues, no one here does!!! But he said it's probably autoimmune. Though then my Rheumy has no new ideas at all other than he said if Mayo doesn't work out he can order muscle and nerve biopsies. I have 6 docs telling me to see a Neuro for my left sided weakness from birth that it must be Neuromuscular, get to the Neuros and they all completely dismiss it entirely. I'm so glad you finally have some answers.....should we expect to see you on Mystery Diagnosis? )' Thank you for sharing!!!!