DoozlyGirl

Godsgal, So sorry you are so sensitive. I understand your fear -- I lived that way for almost a year. Carrying a set of Epi-pens helped me "gain control". I dealt with a super-duper sensitive immune system in the past that resolved several years ago and today is only sensitive. Over the years, I've tried over 35 meds, which I couldn't tolerate and with the help of an allergist, sorted out some of my issues. So my experiences come from a different perspective. There may be some cross reactivity going on. I was on HCTZ, a diuretic, which is contraindicted in patients with a sulfa allergy, and contraindicated with lasix. Duh, that was an easy one. Along the way, I learned that sensitive patients (us) tend to react to the inactive ingredients/can't process them, such as gluten, lactose, magnesium stearate, corn starch, dyes, etc. Every prescribed/OTC medication has a package insert/prescribing information which lists active and inactive ingredients, which you should be able to find them online. Note that generics vary the inactive ingredients from the brand name, so you may be able to find a different manufacturer. Your pharmacist can help you figure out which brands to reasearch. You may want to consider that liquid caps don't have the stabilizers used to make a tablet, such as magnesium stearate or corn starch. For example, I can't tolerate the brown tablet Advil in pill form, but tolerate the green liquid gels. Couldn't tolerate synthroid, but levoxyl is ok. You could also consider having a local compounding pharmacy make up an antihistamine/other meds your are senbsitive to without the fillers/inactive ingredients. Your prescribing MD just needs to write a script. This could give your body a rest and lower your allergen overload until you find relief. For me, gastrochrom, aciphex (H2) and allegra (H1) helped me until my immune system calmed dowm. At that time, I also eliminated exposure to food allergens and environmental triggers (MSG, frangrences/dyes, molds) and treated my chronic sinus infections/skin rashes/yeast overgrowth which were attributed to candidiasis, due to overuse of antibiotics to treat my constant infections. I used fragrance-free/dye-free liquid Benadryl capsules for my breakthrough anaphylactoid/axis reactions. Epsom and baking soda baths helped my skin issues. Best wishes with your upcoming appointment. Lyn

Hi, My BP swings from low (80/60)to normal (120/80) while lying, then high while sitting (150/100 and as high as 200/110), then significantly drops on standing (down 40-50 systolic-top number and 10-30 diastolic-bottom number). I will often have a narrow pulse pressure at this point. Didn't tolerate beta blocker. Interestingly, I have been going through my medical records from the beginning of my symptoms, and I have had periods of high BP 150/100 alternating with normal BP over the past 15 years, which would resolve spontaneously. I have tried different BP meds (Beta blockers, ACE inhibitors, diuretics) and have not tolerated any of them, so had to stop them within a few weeks. My past experiences are starting to make sense. Now I have to figure out what to do about it. Lyn

Victoria, Sorry it has taken me days to respond, my 3 week old computer got a virus and it has taken days to get it debugged, and I didn't want to send messages until I had a virus extraction team guarantee my system is clean. I plan to respond to you by email, but wanted to send this along tonight. In case it takes a while to get in to see Dr Grubb, I wanted to send along the names of my neurology team in Wisconin. Just before my computer issues I read one of your posts seeking a knowledgeable MD in one of the states near Iowa. An endocrinologist ordered the autonomic tests for me, then Dr Alexandru Barboi, autonomic neurologist at the Medical College of Wisconin at Froedtert Hospital in Milwaukee gave me my autonomic diagnoses, based on my testing results. He was absolutely fantastic, putting me at ease and was the first to explain autonomic dysfunction to me, putting together what we knew about me very complex history at that time. I see his NP, Mary Yellick on a regular basis. There are also two or three other neurologists who understand autonomic dysfunction there and they have a full service autonomic lab (QSART, TST, TTT) and other muscle-related tests. Not sure how far out they are scheduling out, but if you have any autonomic test results, I bet you could fax them, which may expedite your appointment. I am now trying to get into Mayo for more extensive testing to determine the triggers/cause of my AN and NOH. I am convinced my triggers are endocrine related, so I am now on the search for an endocrinologist with a basic understanding of autonomic dysfunction. Lwet me know if you have any questions. Best Wishes, Lyn

Looks like I am a week late on this very interesting discussion, but thought I'd add that my autonomic neurologist feels very strongly that CFS, FMS and dysautonmia are just different presentations of autonomic dysfunction. In his view, if your primary symptoms are fatigue, you get the CFS work up, chronic pain lands you the FMS work-up and cardiac or other symptoms of dysatutonomia leads to autonomic testing. I started telling my new physicians that I have scores of symptoms and experiences pointing to "Metabolic Fubar", and hope they can help me sort out one aspect of my dysfunction. I do believe my issues started out with my immune system, then IBS. Anyone have shingles as a young adult? This tipped me off that I have immune dysfunction, which lead to allergy testing and MCS. And yes, I did have mono in 2nd grade and decades later diagnosed as CMV. Can't wait for the day to find somone who is clinically savvy enougth to cross over current specialties. I wonder if the functional medicine MDs will be the ones to do that. Many of them have an anti-aging background, which in all reality is at the core of understanding cell biology and molecular medicine. Lyn

Thanks for your responses. During my TTT, I was not diagnosed with POTS, but I have been monitoring HR, BP and temp over past 24 hours and have caught 8 episodes of >30 bpm increase in HR. This is funny to me, because I didn't realize my HR was increasing. In the past several months, I lost my sympathetic overdrive (tacky, sweaty, etc) and have been in parasympathetic overdrive, where my HR is faint, hovers in the mid 40's for hours and I can't get off the chair. Naomi, I read that body temp is supposed to change only 0.5-1.0 degrees in any give day and most temps stay within 0.5 degrees of their basal temp. Have you figured out your basal temp yet? This is your body temp the first thing when you wake up in the morning. I took mine for three days, then averaged them. My Autonomic Neurologist feels that my hypothalamus is at the the core of my temp dyregulation, which certainly falls within sudmotor and cardiovascular autonomic neuropathy. He has no idea how to treat my temp issues either. Meanwhile, for years, I have felt my Hashimotos hypothyroid is being undertreated, and a recent TPO proves it, but my PMD(whom I adore) won't increase my dose of T4(only at 50 micrograms!) and/or add T3. I have an appointment with an endo in 2 weeks, who supposedly treats Hashi's with T3 considers saliva cortisol and adrenal insufficiency. I called and spoke with her nurse. I am hopeful, since there was an 8 week wait to get in and they found an appointment for me in only 3 weeks. She is only 32, so I am hoping she's more progressive then the old guard endos I've seen. Thanks again, Lyn

I have also had horrible cycles - metomenorhagia is the medical term meaning many and heavy. BCPs always made them worse, tried all kinds - estrogen, estrogen and progestin, progestin alone. After two surgeries for fibroids, I finally figured out estrogen dominance/progesterone deficiency was likely to blame. Had already been on progesterone cream from a compounding pharmacy and when I figured out the right dosing schedule, within 1 month, I was able to get off my current 3 year rollarcoaster ride of hemorrhaging. An endo, my OB/BYN and PMD didn't figure it out -- A NP who gave a talk on natural hormones suggested I alter my dosing and it worked!

Just when I thought I figured out how to post a link..... I'll try again. http://www.daxor.com/clientlist.asp In case I screwed this up again..... http://www.daxor.com/clientlist.asp Lyn

Great article. Thanks for sharing. I was stunned to read that RBC volume depletion was so prevelent - 57% of 539 patients in cohort, less than the 45% who were were hypovolemic. Of those with RBC anemia, 19% had a normal range hematocrit. Of the 46 patients taking fludrocortisone, midodrine or both, 24 were hypovolemic, and only 20 were were normovolemic. Not great odds for finding proper dose of these meds, huh? Shooting in the dark without some testing to guide the way. Could mean treating RBC anemia could be extra boost someone may need to bring up volume, but hard to get the MD to track down anemia source (gluten, Bit B-12 deficiency, iron or folate deficiency treat with normal HCT...The authors point out that optimal treatment depends upon correctly id'ing and treating specific volume abnormality. Also illustrates caution for those on both Midodrine and Fludrocortisone, because 9/10 people still had volume depletion. Interesting to read that the majority of patients had been evaluated and treated empirically, still symptomatic, then referred to the Cleveland Clinic. Of the patients taking Fludro, 48% were volume depleted and thought to be underdosed, and of those taking Midrodine, 33% were hypovolemic and at risk for decreased perfusion in response to vasoconstriction. The authors recommend that blood volume measurement should be added to TTT for comprehensive testing of syncope. While looking at the Daxor site earlier today, I see that Mayo - Rochester, Vande, Columbia, Cleveland Clinic Westchester and others are using this method - here is the link: My link Lyn

I tried to get my second endo and PMD to consider cyclic Cushings as well, after my urine catecholamines and plasma metanephrines ruled out pheochromocytoma. By then my swinging BP (low while laying, really high while sitting and drop while standing) raged after an epidural-->CFS leak-->blood patch, triggered cardiac symptoms and prompted autonomic testing.

Godsgal, Sarah, and Lieze Thank you so much for your posts. Lyn

Reen and Sarah, I just pulled the trigger and ordered the Philips GoLite Blu hf3332 light therapy device from Amazon with free shipping. This is the mid-price model, and includes a timer, clock, rechargeable battery, AC/DC adapter and carrying case. The higher priced model, hf3331 is the same as above but includes an international adapter, and the low-priced model must be plugged in and has no clock. Should arrive in a few days, so if you like, I could let you know my thoughts once i use it. Last summer, when I did my research, I learned that Apollo had been the industry leader in light therapy for years, and brought the concept of blue light therapy to market, after identifying that the bandwidth of blue light is over 5 times more effective than full spectrum light at triggering a neurochemical shift in circadian rhythm, SAD and depression. Apollo was bought out by Philips. My sleep specialist gave me a pamphlet from Apollo listing published studies supporting light therapy in general and specifically blue light (performed at Thomas jefferson University, Harvard, Brigham and Women's, Yale, NIH and other sites). Sorry I don't have a link. Previously, 10,000 lux (I think I called it lumens in a previous post...sorry) was the recommended light source strength. I didn't purchase it then, because funds were tight and wanted to give my chromotherapy a try with sunlight. I did pretty well keeping thaqt schedule until day light savings time, and am now revisiting my sleep issues. So many symptoms, so little time and money..... Let me know if you have any specific questions. Lyn

Victoria, I really liked Dr Kroker, haven't been back for years, because once I went through his treament recommendations, the symptoms that were left screamed "endocrine." Will definitely check out to see if he can get me started locally with possibility of MCAD. Are you from the midwest? Have you had reoccurences of candidiasis? Thanks, Lyn

Mack's Mom, so glad things worked out for your son. Lyn

Hi there, I have read through the previous posts on body temperature and haven't seen my situation mentioned. Anyone have plummeting temp? I, too, have a low body temp. If it reaches 98.0, which is not often, I feel pretty decent. I feel worse at 97.5 and even worse at 97.0. But every morning between 9:00 and 11:00 am, I have these episodes, where my vision goes blurry, my temp plummets (gone as low as 94.9), my HR drops to 40's (gone into 30s), my breathing gets really shallow. By this time, I am back in bed (if I was up before then) and lose consciousness for the next hour or so. If I am not awake before this time, there is NO WAY I will awaken until my temp comes back up. My alarm could be going off and I will not be able to be awakened during this episode. I am essentially hibernating. Last month, I was at a conference and had this episode while in a session and couldn't lie down for about 15 minutes. By then, my body was trembling and it looked like a seizure, but I could hear my friend talking to me. it. Found some space in the office to lie down, elevated my legs, and she grabbed three winter coats and put on top of me. 30 minutes later, it was over and after 2 bottles of water and a can of V-8 I was well enough to go back to the conference. I've had several similar mini-episodes later in the day, but they were shorter in duration. Anyone familiar with plummeting temps? There are so many knowledgeable people on this forum, I am very interested in your comments and perspectives. Thanks in advance for your thoughts. Lyn

This is a very interesting discussion. I have wondered how to string my many diagnosis and odd symptoms together and always felt each contributed to the next. Chronic infections leading to antibiotic overuse-->IBS-->migraines--> allergies-->candidiasis-->endocrine issues--> autonomic dysfunction. Since 80+ percent of the immune system is located in the gut, I always felt my issues picked up speed with the IBS. In the past three years, my PMD has ordered xifaxcin several times, which helped me control my colon issues. She is more comfortable ordering this than 200 mg daily diflucan, which I had taken for about 6 months to treat candidiasis. Recently, I found digestive enzymes helpful. Anyone else taking enzymes? Lastly, Florinef and corticosteroids can promote candidiasis and I was wondering if anyone has had issues with that? Thanks, Lyn

So nice to read you had a postive experience! Good luck with sleep study and repeat autonomic testing. Please keep us posted! Lyn

Hi there, A dear friend has gone into anaphylaxis several times in the past few months for little/no obvious reason. Once while at Lowes in the garden section. She has not been diagnosed with dysautomia or allergies, but has been diagnosed with panic attacks and PTDS, which is suspicious to me. Here is the oddity, her allergy testing came back unreadable, because she welts up from any poke to the skin, Her only related diagnosis is dermatographism. Last night while on the phone, I told her about the pics I saw on dinet and she happened to scratch her arm and within minutes had welts, then local itching, which moved up her body, tachy, shallow breathing, confusion, etc. I stayed on the phone and prompted her to use HC cream on arm. After 25 mg benadryl, her breathing picked up and after 40 minutes she was ok. I was ready to have her use the epi pen and call her husband at work if her breathing was constricted. She wouldn't let me call her husband and refused to go back to ED, since she's been there multiple times and has given up on ED. I stayed with her on the phone till her husband got home. She lives in Charlotte, NC and doesn't know where to turn next. She has a local allergist, but he is at a loss. I went to the Mastocytosis website, but couldn't find reference to similar episodes. Does any of this sound familiar? Thank you so much for your expertise and guidance. Lyn

Sarah, Last summer, after a sleep study identified central and obstructive sleep apnea, I was treated with a APAP machine (automated CPAP), which made a world of difference for me, but I still had sleep issues, falling asleep. After working with a sleep specialist, he diagnosed Delayed Sleep Phase Syndrome, a circadian rhythm disorder, common with autonomic dysfunction. Over the past 9 months, we were able to coax my body into readjusting my sleep trigger by moving my internal clock ahead using melatonin and light therapy then keeping a strict sleep schedule. Unfortunatley, during day light savings time last month, I lost my routine and will have to manually reset my hypothalamus again. This process is called chromotherapy and while using low dose (starting with 1.0 mg) melatonin 90 minutes before your internal bedtime (let's say your body falls asleep at 3 am), then at 1:30 am, take the melatonin. Go to bed at 3 am. The next night, you advance the asleep time by 3 hours. You then take the melatonin at 4:30 am and go to bed at 6 am. You keep doing this until you reach your desired bedtime, ie 10 pm, etc. Here is where the light therapy comes in - each morning, after 8-9 hours of sleep, you need light - sunlight, or special light device for 15-30 minutes to help reset your hypothalamus. The hypothalamus gives a signal to the pituitary when to make melatonin and the evenings production of melatonin is triggered by morning light from that morning. This therapy has helped blind people adjust to a sleep schedule. Research has found that this concept of light therapy is helpful with those with Seasonal Affective Disorder. Living in Wisconsin, I understand how no sun can impact one's ability to function. My local MDs have all of a sudden been praising Vit D to treat all sorts of health concerns, because we don't get enough sun here. They say nearly 90 percent of locals fall below RDA of Vit D, now that they are testing for it. I have looked into a light device and have found the type and brand I plan to purchase. I thought that since we're coming into summer, I wouldn't need to buy a device, but we have had a particularly sunless spring. My sleep specialist was emphatic on 10000 lumens. Newer technolgy uses blue light spectrum, verses full spectrum light. I'd be happy to answer any questions you may have. Best wishes, Lyn

Victoria, Thanks for pointing out that we have so much in common. I would love to hear more about your journey, so we can compare notes. Funny thing about the neuropathic pain-- I had it for years, but then it suddenly stopped. Guess my autonomic neuropathy (AN)progressed past the pain, or my supplements helped (high doses Vit D and B-12). I recently joined a local peripheral neuropathy (PN) support group, because AN is categorized under PN and I am always looking for new insight. We spent an hour today talking about meds and supplements for the pain - most have tried gabapentin, lyrica, neurontin (all seizure meds)but many couldn't tolerate the side effects. The group's vitamin guru, was diagnosed with ALS (Lou Gherigs)17 years ago and was wheel chair bound before using supplements. He found a good regimen and now has no pain and barely needs his cane. This group swears by multiple supplements for repairing the PN nerve damage. --> Alpha Lipoic Acid 600-1200 mg (split 1200 mg dose into 600 in am and 600 mg in pm) --> Acetyl L-carnitine 500 mg --> Co-Q 10 200-400mg. (I have read up on Ubiquinol, a newer better version need only 50mg to 100 mg) --> Vit D 3 - up to 3000 mg Sleep is huge for me, and I struggle with it everynight. I have a circadian rhythm disorder and my body won't settle in until 4-5 am. I do use multiple products to help me sleep and when I alter my routine, I can't sleep or stay asleep and I pay for it the next day. Good Luck with Dr Grubb! Lyn

Mack's Mom, Sue and Victoria, My hypoglycemia was hard to figure out because I don't get the typical sympathetic symptoms (tachy, adrenaline release), which is called 'hypoglycemia unawareness' and tied to autonomic neuropathy. Instead I get double vision which first occured after getting off a massage table. I then figured out massage drops blood sugars. Each time I get double vision, I'll eat something sugary, like hard candies and protein, like nuts, then my double vision would go away within 30 min. My sugars are normal (tested multiple times even when I was still having tachy events), A1C is high end of normal, and insulin was high during delayed glucose tolerance testing. My endo at the time mentioned Metformin, but then my labile BP issues took center stage, she referred me to autonomic neurologist, then decided she can no longer help me. After spending a year with my neuro team working on dysautonomia, I am back to endocrine issues. I know I have cortisol issues which are tied to sugar regulation, and worse with my period. I see a new endo in two weeks and hope she will be able to help me sort this all out, meanwhile I make sure to have a bag of goodies with me at all times when I leave house. Lyn

Mack's Mom, George Kroker, an environmental allergist from La Crosse WI, gave me the MCS diagnosis, along with systemic candidiasis, food and environmental allergies, and Hashimoto's as cause of my 'hives', flushing, chronic fatigue, and issues with fragrances. Dr William Crook mentioned Dr Kroker in his books and I later learned he shared a patient with Dr Orian Truss, the MD who first identified yeast overgrowth leads to toxins and a host of illnesses. Sublingual drops, candida meds and allergen free diet really helped eliminate these symptoms. To this day, I can't tolerate fragrence/perfumes (forget the detergent aisle) or MSG, am seriously allergic to cats (anaphylaxis during delayed allergy testing), can't digest milk and have issues with wheat. Those are all things I have learned to avoid/limit, so not much of a daily issue there. Weird sidenote, but my "hives" never itched and I had serious flushing all the time, but now only seem to be triggered by alcohol, which I limit due to dysautonomia. Incidently, Dr Kroker did mention that I have 'active' mast cells, then put me on gastrochrom, zyrtec, and H2, and gave me an epi pen (never used) which was amazing in mitigating my symptoms. I didn't consider the connection until reading all the posts on MCAD and mastocytosis. Maybe I still have immune issues what are in the background?? I do struggle with new onset of GI issues..... Lyn

Thanks everyone for such a warm welcome. I spent much of the past 18 months just trying to get through each day, then trying to live my life during the occasional 'good days'. I was naive enough to think that once I finally got the diagnosis of autonomic neuropathy, the stars, moon and sun would align, the heavens would part and many of my questions would be answered by the medical establishment. Fortunately, many of my questions have been answered here, many curiosities and oddities addressed and guidance where to turn my research on my peculier symptoms. I will post separate reponses to the questions, otherwise this could get way long.....8>) Lyn

Hello everyone, I wanted to introduce myself. My name is Lyn and I live in Wisconsin. I was diagnosed with autonomic neuropathy involving sympathetic and parasympathetic fibers of my cardiovascular and sudomotor domains at the Medical College/Froedtert. Orthostatic Hypotension and episodes of parasympathetic overdrive (involving plummeting temperatures as low as 94.9 and loss of conscousness/forced sleep) are my most debilitating symptoms. Just like many of you, I have been sick for years, but it wasn't until last year that my health issues forced me to stop working, change my lifestyle and focus on healing and finding symptom relief. I have been a guest for the past year and just recently joined as a member. I guess I wasn't convinced this diagnosis would stick. Over the past several years, I was convinced I had so many other disorders, that as my symptoms shifted, I figured I'd be on to the next diagnosis. I included a pretty thorough list of current and past diagnoses in my signature. My symtoms are actually cyclic and I can even predict my worsening episodes based on my menstual cycle, seasons, time of day or night, what I ate, when I ate it and amount and type of activity. The best waqy to describe my condition is that I have massive swings - between hypersomnilence and insomnia, hyperglycemia and hypoglycemia, sympathetic overdrive and parasympathetic overdrive, hypertension and hypotension, salt craving to sugar craving, inablility to focus during the morning/day to super directed mental focus in the late evenings. I want to thank everyone for sharing their personal journey, resources, recommendations, perspectives and insight. This site has become one of my go-to sites. I look forward to posting and responding to other's posts. Please feel free to share any advice or insight you may have. Thanks, Lyn

Hello all, I, too, keep coming back to adrenal issues at the center of my symptoms. Over the past 2 years, my odd, cyclic symptoms have lead to work-up for pheo, pituitary tumor, Addison's, Cushings, PCOS, diabetes, porphyeria, rare genetic disorders, among other things. Cardiac symptoms eventually lead to autonomic dysfunction. In 2005, an allergist diagnosed Hashi's after TPO=1000. I went into anaphylaxis (complete with ambulance ride) after taking Armour Thyroid for 5 days, then was directed to find an endo to treat my Hashi's. I later learned this is a classic sign of undiagnosed/untreated adrenal issues. Since TSH, FT3, and FT4 have all been in "normal" range, the first endo, Primary MD (PMD) and a second endo will only prescribe 50 micrograms of T4. I have long supsected my thyroid is undertreated, needing higher T4 and/or T3. I've had saliva testing done twice, both with non-existent flat morning cortisol curves, low DHEA, low progesterone, low testosterone, and high estrogen. This same PMD diagnosed adrenal insufficiency and prescribed 15 mg (10mg in am/5 mg in pm)of Cortef (careful not to exceed physiologic dosing), which was noticable for a year or so, or until last January when my second endo had me stop the Cortef (took 6 weeks of pure agony and a muscle relaxer) in order to test my HPA, which she states is intact. Meanwhile, I crashed hard. Last April, I was diagnosed with OH and while I was tachy, not high enough to get POTS diagnosis during TTT. My neurologist prescribed low dose Zabeta (beta blocker), and after only 5 days of 1.25 mg/day, my tachy turned into bradycardia with a HR in the 40's for 6 weeks. Since then, significant OH, morning crashes precipitated by plummeting temps (as low as 94.9 degrees), hypoglycemia, and overall parasympathetic symptoms fill my days. I can barely function until 7 pm, then am up until the wee hours of the morning due to a circadian rhythm disorder. My autonomic neuropathy involves both cardiovascular and sudomotor domains and both sympathetic and parasympathetic fibers. My neurologist states I am likely on a path towards PAF/MSA, unless we can find the biochemical trigger for my autonomic dysfunction. Research on my symptoms keeps pointing to issues with HPA/adrenal/thyroid. I suspect Addison's, especially with new onset of orthostatic tremors. My Neuro is trying to get me into Mayo Clinic in Minnesota with either Autonomic Neurology or Endocrinology. Meanwhile, I found a new Mayo-trained endo in my health system, called and talked to her nurse. She does prescribe T3, is familiar with autonomic dysfunction, and will consider previous saliva testing to assess adrenals. I have an appointment in a few weeks and am hoping she can help mitigate some of my current symptoms. Has anyone had success with Mayo trained physicians helping to sort out hormonal issues that trigger dysautonomia? I appreciate any insight you may share. Thanks, Lyn

Hi there. I'd like to share a few points regarding nuclear medicine blood volume studies. Twenty years ago, when I trained as a nuclear medicine technolgist, we performed blood volume studies using two different isotopes, one (Chromium-51)to calculate red cell volume and a second (Iodoine-125)to calculate plasma volume. Both components are needed to determine Total Blood Volume. Over the past decade, the radioisotopes used to perform these studies have become unavailable for long stretches of time and many nuclear medicine departments have stopped offering these time-consuming studies. Last year, when I was diagnosed with OH, I couldn't find a hospital in my state (WI) who was still performing this procedure, and the neurology department at my local medical college couldn't figure out how to order a blood volume study with their new computer system, so I guess this may be a problem as well, even if a nuc med department is willing to start performing them again. Several years ago, a new technique for performing blood volume studies was approved by the FDA, but few nuc med departments have had the need/patient volume to obtain this equipment and set up this procedure. I am not sure if there are billing codes for this procedure, which could be another hang-up. I am sharing a link to a journal article on this new procedure, in case it can help someone find a department willing to pursue this procedure. Still figuring out how to add link. You may have to cut and paste. http://tech.snmjournals.org/cgi/content/full/35/2/55 Towards the end of the article, there is a one-liner about POTS as a possible pool of patients. Lyn