rubytuesday

I have had GERD and gastritis for years. I avoid spicey foods and fried fatty foods. I use a wedge (as I'm a side/stomach sleeper and am short) instead of pillow--use a neckroll under my neck. I don't snack at night either (unless I don't mind laying awake in misery that night). I use Prilosec OTC and Zantac. I have had to use Reglan for short term intervals.

I've thought about the same thing. It is so cold outside and church can get pretty hot (you never know what to expect there), and when DH cranks heat up to shower in morn and then again when he gets home at night I feel like I can't breathe and get lightheaded as I feel the BP dropping. Plus the cold is a killer on my fibro and arthritis. I was at least able to shovel walk and drive last year but that's off my list of things 'too do'. I don't think winter or summer are my friends.

I used to take Guiafenisin before it's patent ran out (Rx form) for my chronic sinus congestion to thin the mucus. Once the patent ran out, it is also (I believe) similar to what is in Mucinex. My insurance will cover Mucinex D but I don't need the decongestant agent currently--just the thinning agent. Taking it as directed is too costly when you have to stay on it. I believe it was also formerly called Entex. I also have fibro and EDS hypermobility. A lot of drugs are marketed for one thing but help other things (or worsens other things). I was taking Singulair to help control asthma (but learned it has allergy treating components) and Zantac at bedtime for stomach (but also has antihistamines). Honestly in me, I don't see that my fibro feels one bit better, and I still have terrible allergy breakouts. Usually (because of the cost), I'll only take Mucinex when I'm 'sick' and being so immunocompromised it takes me so long to get over things and when I get sick, everything does the turkey jerky.

I wish it was only my feet but I, tt have EDS, mulicomplex immune deficiencies, allergies that I never know when will strike, Orthostatic hypotension with ANS failing. I have been battling a terrible rash with bumps that just is so agonizingly itchy on my trunk, groin, wherever bands of undergarments rest, around the armpits, up my neck. I had to do aquaciser for physical therapy and they'd been leaving me on treadmil in heated chemically treated water with the jets propelling that stuff into my skin for 50 to 70 minutes at a time and despite showering immed. after the aquaciser and again at home, I really feel infused with this stuff that it is the culprit. I have been with-holding antihistamines just in case any testing would be delayed when I see the Cancer Centers allergy/immunology/Mast cell interest in 2 weeks. I am raw. I tried a little Lubriderm and I remembered taking Aveeno oatmeal baths in past (recommended by PCP that only gave short term relief). It might help your feet though? With hives would take 50mg of Benadryl (but makes me a little drowsy) in addition to my bedtime Singulair and Zantac. I just want to dig where it itches and know I can't and this morn I even took HOT shower (altho a no-no) while sitting and standing to let the water do the scratching unabrasively (altho I'm sure the heat made the dilation worse/itching worse). And for some reason (have always been this way) night time is worst (perhaps due to metabolism changes and entrapped body heat under night clothes and bedding). But honestly you do have my sympathies.

Boy can I relate--always rashes or welts popping up. I was noticing more rash/itches as each aquaciser treatment in therapy (duration) would advance, despite showering right out of the aquaciser and again at home. I took it to be from chlorine/chemical irritation as it was on areas that were under the water with the jets infusing those chemicals in even deeper. It started to be mild but now is under/around both arms, between breasts and under one breast, behind both knees, now where I'd had allergic reaction to paper tape a month ago in bend on my elbow and now it's beginning in my other elbow. I got my PCP to order Diflucan for me in case it is yeasty from the chemicals. Took my first dose last night but sure hasn't helped yet. I'm also having rash start at one side of the waist line and beneath the buttock and someplace I would not care to mention. I am schedules for hemeoncologist for multicompleximmunodeficiencies and who is allergist with Mast Cell interest in 2 weeks and I'll bet my skin woud be cleared up by then. I just want to dig and dig to scratch but know I can't. Former PCP recommended Aveno's oatmeal bath to help calm the skin. If you're like me right now--it is more than miserable. I've held off on anything with antihistamine effects and my hydrocortisone creams as I don't want any thing to interfere with any testing the hemeoncologist may do. I normally take Singulair and Zantac at bedtime (have allergy/antihistamine effects). I sure hope you find some answers. I have multiple drug allergies and other allergies and am Orthostatic Hypotensive with ANS failing.

Hi, Rich. I've had extrinsic/intrinsic asthma (now COPD on CXR) all my life (non-smoker). I was diagnosed with POTS and later orthostatic hypotension with ANS failing me. After major surgery in 2007, over the course of the summer, I was just feeling like I wasn't getting in a good full breath, but attributed it to taking longer to recoup from surgery. I'd mentioned it to my PCP at my follow-up visit that Sept. who ordered PFS that showed my asthma was out of control. (Wasn't wheezing or bronchospasms or anything). PCP started me back on Singulair and sent me to pulmonologist. Pulmonologist added Prilosec OTC for the GERD that can induce asthma and Spiiriva (I think--there were so many). I already used Pro-Air as rescue inhaler (rarely needed). Later pulm. added Foradil that I could not tolerate at all--made me have cotton mouth and very hard to manage secretions, very drying. I changed pulms when he wouldn't listen to me about the Foradil and took myself off of it in the meantime. New pulm put me on pulmacort and eventually we weaned the Spiriva. I have tried Allegra, Zyrtec, Claritan, Alavert for allergies. These do nothing for my allergy symptoms. Benedryl helps but it makes me drowsy. I'd also tried all the Nasocort, Nasonex, Astelin, a RX nasal spray the started with 'F' whose name excapes me and all those either caused headache/sore throat/nose bleed and/or combination of any of above. Recently when I had to cut back on Prilosec OTC from 2 times daily to 1/day due to other meds all absorbed in liver, PCP did add Zantac at bedtime that also has antihistamine. I have same problem--was biking 10 miles/day even in cold wearing Under Armor until I got these legs (hypotonia) that felt like lead on the bike and the leaning forward/dismounting and walking bike uphill of drive would put me into near syncope/tachy. I went on to treadmill with varying programs but it's in solarium--really cold even with warming space up with space heater and I'd wear flannel lined wind breaker and gloves to start but would be peeling those off and tossing on floor soon into the walk but with weak legs was afraid to 'let go' of the machine while walking. My cardiac specialist ordered aquaciser treadmill to strengthen muscles/vessels in legs and build endurance and recumbent stationary bike. My SOB seems mostly when I am nearing a near syncope. I use rescue inhaler before exercise if I notice that I'm seeming SOB. And for me, Nov thru Apr seem to be harder mos. on my breathing so I use my pulmacort during those months. When I feel like I can't breath or am someplace where I feel a syncope coming, I rush out into the cold air too. Maybe if you are SOB so much its time for another check on the pulmonary function studies. If you exercise or go out where it is cold, it is good to drink cold water right before you go outside to help pre-prepare your lungs, too. I pool blood and fluid in my legs, leaving the heart with 1/3 less blood to circulate and the blood that isn't getting back to the heart and lungs is not re-oxegenating well which might be why we get SOB.

I did ask my PCP (Internal Med) to order dopplers of my lower extremeties (same could be done with upper extrems) before I had dx of POTS but was retaining fluid and legs felt like lead weights. She also did an abdominal and pelvic ultrasound and echocardiogram (again with fluid retention even in my face). These are things a vascular surgeon would probably do first line in checking things. I had also had MRI/MRA of brain + neck ordered by hospitalist on behalf of my PCP when I was hospitalized for the chest pain and syncope. So in my view, these are things your PCP should be able to check before going to a vascular physician.

Rich, I also forgot that I was tested for Lymes (by hospitalist filling in for my internal med PCP when I was hospitalized). My lab test (except for the Delta Granule Pool Storage) were ordered by both my PCP (nternal med) and/or rheume (internal med). Urine metanepharines were ordereed by cardiologist at my request. I already knew my standard endocrine tests (thryroid profile, FSH, 24-hour urine cortisol + serum cortisol, fasting blood sugar) regimen from having had pituitary tumor removed/being followed by endocrinologist and so had my PCP do those tests and checks. The iron studies/vitamin D deficiencies were ordered by my rheume. Rheume ordered my first sleep study and neurologist ordered a second sleep study. My PCP ordered the ESR, ANA, SR, RF (but you can have neg. RF but still have RA), SLE and others I cannot recall off the top of my head. My PCP orders the special chemistries and vitamin checks at my reminders. She also ordered my Pulmonary Function Studies (asthma out of control unbeknownst to me). Pulmonologist ordered CXR and then CT lung that showed I did have a pneumonia at one time (when I was symptomatic, 3 CXRs failed to show pneumonia). Sleep study doctor (pulmonology if I recall) did the sleep studies at 2 different sleep centers--both showing I never acheived deep phase of sleep, had very little REM, had hypersomnia. Sleep doctor had also run sleep deprived EEG to R/O seizures. The MRI/MRA was ordered by hospitalist (on behalf of my PCP) when I was hospitalized (showing Chiari I which I'd already known I'd had from prior MRIs ordered by ER physicians and neurologists when I'd had migraines). My echocardiogram,ultrasound of abd. and pelvis, dopplers of my lower extremeties, cardiac stress test were all ordered by my PCP. TTT and 30 day event monitor were ordered by cardiologist. Delta Granule Storage Pool lab test was ordered by Cardiac specialist in dysautonomia. The immune testts had been ordered by my Infectious disease doctor (and am now being sent to 2 specialists at a Cancer Center for multicomplex immune deficiencies--an allergiest/immunologist with interest in Mast Cell Activation, and another hemeoncologist there who specializes in bleeding disorders and immunology. My gastroenterologist did my scope finding the GERD and gastritis that I already knew I'd had. I also know. He also did pill cam when iron def anemia and B deficiency was found to R/O Celiac Disease or something else. I have gastroparesis but am waiting to return to him to explore that since I know how to eat and have so much more going on right now. Please see my reply to naomi as to the info about the sitting MRI (it went into detail). A rheume (internal med) who specialized in fibromyalgia (which I have) added the diagnosis of EDS III and the cardiac specialist in dysautonomia who is well-versed in EDS concurred with that diagnosis. I see a genetecist next week for the 'official' lable plus to decifer if classic or mix as well.

Naomi, A supine MRI will show a Chiari I if one is there, but when I read about and viewed videos from the Chiari Institute (I think it's around LI, NY?), and also on Dynamic Imaging Center website about sitting MRI's, they explain that the size (i.e. 2 mm or 7 mm) lying down is really not the significance. It is rather, if you are experiencing these symptoms, no matter how small, you need to have a sitting or standing MRI since it only stands to reason that gravity pulls the cerebellar tonsils farther down into the spine, perhaps blocking spinal fluid flow around and impeding the circulation in the brain. I have the neck pain too. And if I hyperextend my head accidentally when getting into bed at night--boom headache that lasts all day. PM said years ago that I had cervical neruitis but no treatment benefitted me. My neuro here in boonies doesn't really understand my EDS (big red flag) and Chiari significance--but it is also significant with symptoms of dysautonomia altho they are two seperate/different entities. I suspicion if I really, really want this pursued, I must find a neurosurgeon or a university affiliated neuro center (my gut says neurosurgeon) to evaluate as they are the ones who operate on brain structures. There are some Chiari Institutes but I believe they are relatively few. But a good starting point would be finding someone in network, calling and asking if they are practiced (or looking at their clinical interests on-line) in Chiari I. The reason I say University affiliated neuro center is that that is where I found the closest sitting MRI imaging center to me--2 hr drive by OSU. I hope that helps. I will try to find the link here. http://www.chiariins...deos/index.html. You can scroll through the videos and watch and learn. I think I found this link from another poster here. Dynamic Imaging Center (around OSU in Columbus, OH) has a website that explains sitting MRI's too.

Rich, The cardiology specialist in the Dysautonomia/Cardiac Center where I went just took one look at the purple feet (I'd also had negative abd./pelvic ultrasound and dopplers of the lower extremeties that were negative). They change color even worse when I would go from lying to sitting and sitting to standing or lying to standing. You can also see fairly deep marks in skin (like where the bands of your socks are). I take a 'water pill' and that helps move the fluid that pools with the blood. I have EDS so my veins and muscles in my legs are very compromised--the connective tissue that envelops/attaches everything within the body is lacking in components necessary to hold things securely in place. My cardiac specialist is well versed in EDS and he explained the way it was contributing to the blood pooling with my orthostatic hypotension and autonomic nervous system failing me.

I was at ENTs today sitting in chair for scope and showed my DH the same thing. Told him to look at how red in spots/purple in spots. It was really cold outside but we'd been inside a good while (yet exam room was a little cool so I kept coat on). I told him that I'd bet my feet were purple. Looking at the insides of my fingers they were blue to bluish purple while the dorsal parts of the hand were more reddish.

Rich, One thing I was thinking as having EDS with this is that I have Chiari I which is not so unusual. When MRI reveals Chiari I, lying MRI is pretty much useless when one begins experiencing symptoms of dysautonomia and should have sitting MRI and the CSF flow studies. I had the complete metabolic profile and special chemistries many many times including checks on the iron, IBC, and other anemic panels, plus all the vitamin/mineral levels to ensure there were no deficiencies contributing to any symptoms. Another thing (since I see Infectious Dis. doctor for osteomyelitis and have multiimmune deficiencies--thus being referred for Mast Cell activation and other testing, I read that H.pylori or immune agents as cause of asthma so perhaps the upper end endoscopy might be necessary). I don't know as I'm still a newbie, reading and learning. (That would be gastrointestinal--the H. pylori). I also had pill cam when B levels were deficient and with the unimproved gastritis and GERD and IBS to rule out Celiac Sprue or other upper GI ailments. My immune labs included T cells, T helper cells, IgGs, IgG subclasses, lymphocyte count, gammaglobulins. I've also had repeated tests for ANA, RF, SLE, ESR to check for autoimmune type things. I pool blood and am a 'bleeder' with history of hemorrhages. Given the history and in seeing my purple feet, my cardiac specialist in dysautonomia ordered a Delta Granule Storage lab test (and I am deficient so my test was positive for Delta Granule Storage Pool Deficiency).

The posterior fossa is a small space in the skull, found near the brain stem and cerebellum. The cerebellum is the part of the brain responsible for movement, balance, and coordination. It is only natural to worry but a surgeon I once worked with was speaking about a patient with 'cancer'. I looked surprised as I saw no 'cancer' on the medical record. The surgeon explained to me that 'until we know otherwise, we treat as if cancer' (meaning they make the assumption until disproved by all other tests before surgeries and while pathologies are waiting). I had a pituitary tumor. I am now under care of specialists at Cancer Center for more work-up. In times like these, I ask myself, is there anything I could do right now to change whatever it is? I look to my faith and my faith community and try to take one day at a time as best I can, keeping distracted by busing myself with something and not dwell on all the 'what ifs'. I have to leave that in the hands of the good doctors who have led me this far and to my Creator. The Serenity Prayer is grounding for me. I'm sending nothing but good wishes your way.

I was found to have critically low vitamin D level and was treated with Rx strength vitamin D. Once it normalized, I have maintained on 1000 IU Vit D-3 (plus vitamin D in my Calcium Citrate and magnesuim and vitamin). I do not know the value but do have it checked periodically and it has been reported to me by my Internal Medicine doctor that it remains 'normal'.

Thanks for your post. My BP can bottom out or surge with the slightest of activity (stress factors seemingly the same). I have been trying and trying (falling on deaf ears) to get my neuro to order a sitting MRI for me (having 7 mm Chiari I malformation in lying position). I cannot get her to understand the pull of gravity on the cerebellar tonsils that can impede spinal fluid flow around and in and out of the brain (also in my case with EDS and dysautonomia). She 'doesn't know what diagnosis to use to code it to get the ins. to authorize it' (I suggested Chiari I malformation in EDS as subcode). She didn't know where they even do sitting MRI's (which was a 'starting point' that I suggested), and I'd told her I'd done my homework and that there is one about 2 hours from here and that if she is not familiar with what I am speaking, I suggested she look on the imaging center's and the Chiari Institute's website as they offer pretty convincing education (Chiari Institute offers video demonstration). I was told by my cardiac specialist in dysautonomia that my ANS was 'failing' and I'd have fewer warning of syncope and could well anticipate pacer since heart rate stays in low 60s rather than tachy when BP plunges. I had read that it is theorized the sympathetic/parasympathetic nervous system may take over what it can when the autonomic nervous system fails. But I know so little and really applaud your research.

I wanted to thank you, personally, but was not sure about posting topic etiquette and not to take away from what I have learned from others as well, but you gave me that drive. Thanks so much. I will let you know what the outcomes are.

I cannot recall the topic I was following but a poster suggested that when I see my hemeoncologist (new visit, referred for the Delta Granule Storage Pool Deficiency found by lab testing ordered by cardiac specialst in dysautonomia), that I ask about a tryptase level. Commonalities were IBS-D, chronic sinusitis, multiple drug, food and environmental allergies, early onset arthritis, fibromyalgia, CFS, tendonitis, pleuritis, tenosynovitis, pericapsulitis, osteomyelitis, osteopenia (early onset), bronchitis, bursitis, pituitary adenoma, ovarian cysts (and cysts on kidneys, lungs, heart), pericardial effusion, diverticulitis, colon polyps, and a host of other ailments. I was feeling scared and overwhelmed and intimidated going to see a hemeoncologist at big Cancer Center. This doctor could not have been nicer. He listened to me and I took copies of my labs showing low T cells, T-helper cells, IgG1, IgG2, other IgG subclasses and low gamma globulins with fluctuating WBCs mostly 'normal'. He asked about parents having chronic sinusitis (why I did not know--both had cancer). I summoned the nerve to ask about this Mast Cell Activation Disorder (all the while waiting to be dismissed, but to my amazement, I was not). He told me there was a very good chance that it might be. He said that it could be that I just have 'lazy phagocytes'. The satellite clinic where I saw him was not able to perform what tests he thought I needed. So now he has referred me to 2 of his associates in Columbus--referring to one for 'multicomplex immunodeficiencies' and referring to the second one for 'immunodeficiencies and the Delta Granule Storage Pool Deficiency'. So I am still scared and yet feel comfortable enough to raise the question thanks to you posters who have provided me with info. Had I only seen hematologist for the bleeding (as the letter instructed), the immune deficiencies I've had may have remained missed as a potential piece to the puzzle. My appointment was the day before Thanksgiving--the same day the phone company accidentally took out my internet when they started up somebody else's new internet services in the neighborhood, crossing the circuits and disabling me until today. My hemeoncologist wanted me in asap and was confident he could do it since he was insider making referral, yet the first appointment isn't until close to Christmas and the other hemeoncologist appt. is late Jan. Without your discussions and input and references, I would never have learned about the link to such things. Thank you all.

I was in the class of 'neurocardiogenic syncope for a little over 2 years, then diagnosed as POTS. The BP would bottom out with standing, bending, stooping, reaching above heart level, lifting, etc. and I began having more and more near syncope and true syncope. By the time the cardiologist got me in to cardiac specialist in dysautonomia, he tells me that I have orthostatic hypotension, that my autonomic nervous system is failing (when hypotensive, instead of the typical tachycardia, the HR usually hangs in low 60s now). He explained that I would have less warning of faints and that could anticipate a pacemaker in future. I have EDS that is an added compromise in the blood pooling in my feet and legs. Some days, however, the least thing I do may make the BP a little high but I am on 2 Rxs to try to get me hypertensive. The fluid/blood pooling/retention makes the BP higher, too, yet when I take the Rx for fluid retention, I'm back to the hypotension problems again. We've tried a lot of different/higher doses of other meds but for some reason, Bumex is the only one strong enough to move the fluid and if I skip a couple of days, it takes 2 days on Bumex to get the fluid off. It's a viscious cycle.

i've found that only antihistamine that handles my symptoms is 50 mg Benadryl which makes me drowsy. I take Zantac at night and Singulair at night for the asthma and GI (plus antihistamine effect) so sadly, I don't use other allergy meds since seem to be waste of money (ins. does not cover either) when not so effective. So then, I guess this has been a mixed blessing. I continue with runny nose, itchy watery eyes and never know what's causing what internally. Even when taking antihistamine, when dysautonomia hits me, my nose is like an open running faucet. Exercise (in the least) and eating do same. as does cold and heat. I do use proventil nasal spray to try to dry the auto drop when I lector at church or am able to attend (rarely) some social engagement with dinner.

Only family or friends who actually witness my syncope really get it--until then, they seem to 'try' to be understanding and supportive but seeing me faint, when never had seen before in my episode of relaying my day, weren't/aren't taken so seriously. DS even took me to UTMC to see heart specialist--be there during exam, hear what he had to say, yet today, asked me if I wanted to help him out by caring for his dog (like co-own the pet he'd rescued). I had to explain to him today (after nearly passing out at vet's w/ him today when BP had run low all day and had couple near syncope earlier in day, too, and he grew up with my mirgraines--he hasn't actually seen me faint, although his son has as has my DH), so obviously he still doesn't quite get it. I told him that if I were able to reliably care for a pet, I would have a pet but since I cannot, I cannot assume daily care for his pet while he works. Too boot it would mean 'just tying dog out to do business' when freezing cold/windy when I can't tolerate heat or cold w/ dysautonomia and fibro/arthritis and only weigh around 90 lbs and have narcolepsy, and it takes all day some times to summons enough energy to do basic ADLs. DH has been a Godsend to me but now really has to help out by doing all grocery shopping and p.m. meals and help get laundry from bottom of hamper and back of dryer. He's started helping w/ laundry and making bed since he'd first seen me faint this spring. (had sx's 2 1/2 years before true syncope). Now DM (who's never seen me faint) and lives in another town wants to stay w/ me whenever DH travels for work thinking I shouldn't be left alone in case I would get hurt or not wake up from event. (I at least am able to pace myself and do or not do but if I had elderly DM to worry about driving in snow and ice to be here, and to feel need to make her feel comfortable, I'd probably be more stressed that would work against this body). But I feel blessed that at least those closest to me take me seriously now. (DS fusses at me when I do things I shouldn't that brings me to floor and does try to help but it's my fault for trying to be miss independent when I'm able to be vertical). I spring on a 'good day' and hope things will continue to fare well for at least being able to do part of what I set out to do. We should all be so blessed. I understand your frustration. It's been a long road for me--dx'd with the invisible fibro/looking so good in 1998.

Griffin, When my sxs of near syncope (low bp) started nearly 3 years ago now--that may 2009, TTT was neg but 30 day event monitor showed some kinds of runs of tachy (cardiologist started me on Rx for this before 2 weeks of testing was completed). It was hot summer and even with meds, and med changes and adjustments all through another year, another TTT was performed and cardiac physiatrist put me on Flourinef. Still more episodes over hot summer of 2010 with more Rx changes--low BP near syncope coming more frequently. By this spring, 2011, my cardiologist and PCP told me I had POTS and was on wait list for cardiac specialist in dysautonomia. Did not get in as wait list was year long--referral in Mar. Cardiologist saw how debilitated I'd become over summer and called this specialist who saw me in Oct. He told me in looking at records, that I had had POTS but now have Orthostatic Hypotension and that my autonomic nervous system is failing. When the BP drops, now my HR stays in 60s most of the time (but occass. will get in the 1-teens, whereas before it would be so much more rapid). He told me to expect fewer warning signs of faint and his goal right now is to try to get me hypertensive (but am still running low BP). His own nurse told me 'some patients we're just not able to get the low bp up on' . It took long time for me to get through this journey as events come and go and from May 2009 to Oct 2011 I was to eat and drink salt, only now to be told that salt is off limits (even though I'm hypotensive and have syncope/near syncope--only now my blood pools and I have fluid retention). There is no fix. I understand well your confusion and the terrible struggle. I honestly thought my body was dying before I'd ever see this specialist, but there is hope. I think we all have good days and bad but have to learn what things trigger us as best we can. No bending at waist, no raising arms above heart level or lifting, no hot showers, sit in shower, no outdoors when over 90 degrees, swaying or sheveling when standing (don't stand still when standing), cross the legs when standing (like you have to go potty and are trying to hold it), go up and down on toes to pump the calves when standing to try to get the vessels/muscles to pump blood back to the heart. I wish you all the best through this trial. Conserve your energy and pace yourself. Know and respect your limits as you learn what works and what does not. I may have low BP but not have much symptoms beyond maybe a little weakness or fatigue but other times it may bottom out (with the OH) and then I have lingering debilitating symptoms for days.

Mine will really burn thigh on down and legs will feel weak but like lead at the same time and feet and legs will ache. My feet and legs will feel ice-cold and it occurs sometimes when standing after laying in bed or sitting on sofa with the legs elevated. It seems to happen worse after the day after I've taken water pill. I am on Mestinon and Midodrine for OI and Bumex for fluid retention. When feet are cold they seem whitish blue but when shower they get purplish black. I was told by cardiac specialist in dysautonomia the purple feet (it was cold in his office and I'd had long wait in waiting room) was blood pooling. Plus I have Delta granule storage pool deficiency (platelet disorder) that may play a role in my blood being 'cold'. These meds make me feel like ice water is running through my veins.

firewatcher, If you're seeing endo and testing is negative, and getting little resolve with gyn, it couldn't hurt to see a hematologist with clinical interest in bleeding disorders/platelets. My Delta Granule Storage Pool test was actually ordered by the cardiology specialist in dysautonomia when I brought up my hemorrhaging. He knew just what it was (and he was correct). These dense granules inside the platelets release things that cause the blood/platelets to stick together but I am deficient in these dense granules inside the platelets. I would be iron def. anemic with hemorraging chronically (childbirth/menses) and over long period of time, but Hgb and Hct were within 'normal' as were platelet counts, PT and PTT. A hematologist with this clinical interest might be able to get to the root of the cause if other things are R/O. My cardiac specialist at UTMC told me that it was one of its own lab staff who finally developed a means to performs a test for this. I would look to a hematologist affiliated with a research (University) center as they are probably more familiar in general. best wishes through this miserable trek.

Julie, I think it was DDAVP injections that the gyn was giving me to stop my monthly hemorrhaging. I would go 20 days off 7-10 and start all over again and put up with that for 5 years til the hyst + 1 oopherectomy. But I would get the injection after about day 12. After my hypophysectomy, I was hoping things would improve, but did not. L'scope showed decidual tissue--had endometriosis on ovaries and one ovary removed with large cysts (which would rear their ugly heads randomly). That seemed to improve except for occasional cyst now and then. The DDAVP did stop my bleeding--which was always good to see. But after I hemorrhaged several hours after a minor sinus surgery, DDAVP would not stop the bleeding and I broke out in hives. Still with the Delta Granule Storage Pool Deficiency that is the first line of bleeding (unless cryoprecipitate, platelets or leukocyte poor plasma would be warranted. So while it helped my uterus, it did not help with the sinus (but that was almost 30 years after the uterine stuff). I had read a bit about this new diagnosis of Delta Granule Storage Pool Deficiency (formerly hemeoncologist called me Von Willebrands) and from my understanding, there can be different causes. If caused by a certain thing and you get platelets, your body can develop antibodies against platelets, so this could be very very bad. This hemeoncologist I'm to see on Wed. has clinical interest in bleeding disorders/platelet disorders, so I sure hope he knows enough about what to investigate. Perhaps it would benefit firewatcher to see a hematologist, too?

Julie, I also have colon polyps, GERD, osteoarthritis (early onset), osteopenia (early onset), chronic sinusitis,intermittent bronchitis, chomophobic microadenoma, IBS-D, chostochondritis, tendonitis (DeQuer Veins), tenosynovitis, pleuritis bursitis, gastritis, pericapsulitis, osteomylelitis, seborrhea (that waxes and wanes), eczema (that waxes and wanes), dry eyes, endometritis, endometriosis, pericardial effusion, cataracts (early onset), extremely myopic and cysts on ovaries, and on heart, lung, kidney that my PCP (IM) tells me are nothing to worry about and appear, self-absorb in everyone over time. I'd also had 2 or 3 Baeker's (sp?) cysts. I have fibromyalgia and chronic myofascial pain with EDS and the platelet disorder I'd mentioned above. My insurance company does not cover antihistamines and I've tried all the OTC stuff just for seasonal nasal allergies or hives/rashes but the only thing that seems to help is 50mg Benadryl around the clock (and that makes me very drowsy). I was reading about this MCAD and see that antihistamine of some sort being part of treatment. And I have no clue (other than the drugs and certain animal/environmental things) that could be triggering GI symptoms. I had pill cam that GI doc initially read as Celiac sprue but the cam was defective and repeated but was normal. My Endocrinologic testing (including thyroid and for pheochrom) was negative. I've lost so much weight (unintentional--and eat a lot when I can, small feedings when I can't but it's a challenge when your daily meds include meds at times of day when stomach needs to be empty and then the absorption time needed for that med when having delayed gastric emptying). I did not know if this hemeoncologist (James Cancer Center who has clinical interest in bleeding/platelet disorders), with this info about my low immune function (that I'm taking that was done by my ID) would consider bone marrow/needle bx as beneficial or not (I think I read that mast cell activation might not show since it too waxes and wanes and is affected by PPIs). I'm not going to take tonight or tomorrow night's Zantac and I won't take tomorrow's or Wednesday's Prilosec OTC (til after hemeoncologist draws any more blood if he thinks he needs to). Thanks for mentioning the tryptase. I wrote it down and will take it with me to ask when I meet this hemeoncologist. I've never met him before and am going to a clinic not on Columbus campus, so I don't know if their lab will be able to do the test or if he'll have to get me over to the Columbus campus or what. Am scrambling to try to get anything in before new insurance/higher deductibles and co-pays start in Jan. and with holidays, while I'm open (save Dec. 8th when I see genetecist), I don't have anything that cannot be changed to get the pricier things done. (But with ID and genetic tests and hemeoncologist and ENT endoscope that's due--it's all pricey). I think that one Delta Granule Storage Pool Def. test was over $1300. I don't remember how much those T cell, T helper cell and IGg subclass and gamma globulin tests were but I do remember they were not cheap. I will try to start a post after I've seen hemeoncologist and what, if anything was done (and same with genetecist at Children's Hospital in Cincy). On a side note, you must be my guardian angel as DH's mother is passed and DHs name is 'Mac' and my DSs name is Julie. She was serving our country in Iraq--so concerned about the POTs my cardiologist/IM med had told me I had this summer all the while having more faints, more debilitation over the summer that she (a veterinarian), found a link to EDS forum discussion on EDS/POTs. I had never told her I had been diagnosed with EDS in 2005 because my doctors here in the boonies (PCP and ortho who'd referred me to the rheume who specialized in fibro who added the EDS III, really didn't know what it was as they'd never had any patients with it that they were aware of). So between that forum (who put me onto this forum), I have been soaking up info like a sponge. And pieces of this puzzle are coming together. I have cognition issues (when once sharp as a nail medical professional) but now this thing with mast cells (when I am only beginning to get my DH to see orthostatic hypotension/dysautonomia stuff when he finally was with me one time when I fainted). The son mirrors me and was born (just found in his 30s having slow healing rib/chest injury) to have congenital dilated aorta that he disregards as EDS potential--saying he's nothing like me healthwise. He even took me to see Dr G (cardiac specialist at UTMC) who talked to him about it. He is starting to get some of my dysautonomia--the fact that I'll have fewer warnings. He used to fuss at me for exercising or going out on my bike when he'd walk in and I'd be on the floor--conscious. But he's never seen me pass out (although his grandson has). We are here in boonies and neuro dismissed me as nothing neurologically wrong as did endocrinologist the cardiologist sent me to to R/O other things than 'POTS'. So if the hemeoncologist or genetecist doesn't pick up on this mast cell stuff, my family will think I'm neurotic. Thank you again. Judy