rubytuesday

My immunologist pulled me off all vitamins/supplements (was taking calcium citrate + vitamin D3 for osteopenis, Fish oil, folic acid, a skin,hair and nail vitamin and occuvite or luten 50+ for the eyes--high risk, plus magnesuim to help with sleep and migraine prevention). She says I can get everything I need in a single Centrum (nickel free) pill. She'd been pushing this so will do. PCP wasn't crazy about stopping calcium + D3. Am not giving up the magnesium as sleep is hard enough and so are migraines. Otherwise I will give it a go. She thinks it is contributing to significant GI issues and interfering with absorption.

I had considered maybe pureed but then I thought toddler food is pretty thick (but then I'd have to be buying a lot of that to get in what I need and it would probably just gross DH out--he would probably be repulsed or think I had lost my mind. I was trying to calculate how much of the stuff I would need to meet nutritional needs and certainly don't want to risk going in the wrong direction. It may come to that but I'm not very creative when it comes to pureeing something tastey. I've always had kind of a gaggy feel with thick solutions (like cold/flu med/milk of mag/pepto bismol, jugs of contrast for radiographic tests, mylanta).

I thought the same thing when I saw the order for 2 hour test. And then arrive and they give 1 bite of scrambled egg and tell me the test is 90 minute test unless it passes sooner. If it takes 90 min to get 1 bite of egg past the stomach, then imagine if I eat a sandwich or a meal (no wonder I have the GERD well into the night (and we eat around 5).

My immunologist did serum food allergy panel and I showed no allergy to wheat. I did discuss gluten with my PCP yesterday. She is running a celiac panel. I'd had pill cam that didn't show any celiac dis about 4 years ago. PCP suggests that when GI scopes me that he get small bowel bx as that's the most reliable test. Scares me to have a biopsy in someplace I cannot see and that is so vascular having EDS and being a hemorrhager.

lilybits, Where do you get this? My pharmacist ordered isosource. My DS is hospice nurse and she suggested if I tolerate the Isosource and start to put weight that they use carnation instant breakfast or boost and add a protein powder to that, mixed in something to make it like a shake. I have a great mixer/blender but haven't been able to bring myself to do that when I can eat solids (they just don't pass/absorb normally). I do drink smoothies (even with lactose intolerance) but I ice cream is too hard on me (love it but it doesn't like me).

I've had 2 sleep studies--done by different facilities. Both read the same. I do not go into Stage IV (deep phase of sleep) and very little rem. What little sleep I did get was in Stage II (light) and even then the alpha waves that wake you up in the morning intruded on my sleep phase close to 200 times. I also had proven to have hypersomnia and narcolepsy. What good came out of it was a couple of years later. The melatonin the sleep doctor kept adjusting along with bedtime, did absolutely nothing for me. My rheume asked to see my sleep study and she told me I had to be on Rx for sleep (tissue repairs in deep phase of sleep). Now the Rx I take is very mild and takes a long time to work and I am still a light sleeper but at least I am able to get some sleep no matter how little.

I had 2 sleep studies well before POTS symptoms/dysautonomia became so pronounced. They were ordered by rheume and by neurologist--2 different businesses. Both show I do not get into stage IV sleep. I spend what little times I sleep in stage 2 (very light sleep). I have hypersomnia during the day. I was prescribed a sleeping pill. I have fibromyalgia and it is in the deep phase of sleep that the tissue heals. The first sleep study doctor told me the pattern was consistent in those with fibromyalgia (but I had not shared that diagnosis with him). My studies included the night and daytime. I had around 200 times when I was asleep that 'alpha' waves (ones that wake you up in morning) intruded on my sleep. With these new sleep aids, in me, they put me out fast but about 3 hours later it is like somebody turned a light on in the room telling me it's daytime/time to get up (not a good place to be a 2 a.m.) and some caused sleep walking/talking and eating. The old time (gentler) Rx I take takes a long time to get me to sleep. I have to keep it on schedule as if I do not, it seems there is this window of opportunity that passes and I may not get to sleep until 5 in the morning or not even at all.

So I have gradually dropped from 102 to 86.4 lbs (5'3") from beginning of July to today. Have been waiting on Ins. auth for Ig Hizentra for immunodeficiencies. Have complained of the nausea/GI issues (bathroom days with the IBS/D). Had debilitating summer with POTS/orthostatic hypotension/dysautonomia. Was putting GI on back burner as needed to see cardiac specialist at UTMC (nearly a day's drive) and with his finding Delta Granule Storage Deficiency to explain lifelong hemorrhaging--referrals to hemeoncologists with one finding something, referring me to another for another problem, etc. Both Infectious Dis and Immunologist/allergist tell me I need Ig (and am low on IgA). None of my doctors who see me regularly have pushed about this weight loss (unintentional). Mestinon caused a lot of nausea, cramping, vomiting and it took a month from my call to cardiac specialist (PCP wouldn't handle problem) to call me back to discontinue it. I was doing aquaciser treadmil for 2 months--going up to 70 minutes (for conditioning ordered by cardiac specialist), and some vomiting w migraine and once in what I now think may have been panceratitis. (another story). Cardiologist ran CT aorta in Dec. to check for defects (as DS has congential dilated aorta and coarctation of aorta--recently found). This CT scan shows pancratic atrophy and fatty cysts on liver. Nobody says or does anything. After things getting going with setting up the Ig, I call GI, unable to get in til yesterday. I wondered about gastroparesis (with EDS/dysautonomia) and now the pancreas? He's ordering gastric emptying study (2 hr) and KUB in a.m. Saw immunologist today who says she's determined to get this Ig IV started but ins won't auth as they say I have 'Failure to Thrive'. ??? I do housework, my ADLs, go out to eat/meet with friends, go to church, volunteer in church activities and up until the dysautonomia (and concerns with immunocompromisation--had been helping with the polls. I told them 'no' when they asked me about March). I may be losing weight but I certainly can not say why. I do have nausea but force myself to eat. My DH looked at immunologist and told her--she eat's the same thing I do ('she just doesn't snack at night like me'). So she tells me I'm at point of needing serious nutritional supplement (moreso than ensure or sustical) and that my PCP/GI should manage it. She also tells me a lot of meds I'm on can cause nausea (the Voriconizole and Cefadroxil I have to stay on for life due to osteomyelitis). She says to come off every vitamin/mineral/supplement and only take a Centrum (nickel free) even tho I take calcium/vitamin D after rheume's insistence w/ my osteopenia and once found with critically low vitamin D years ago. Immunologist says I do not need the extra--just take the Centrum. I reminded her with lactose intolerance, dairy is bit of problem but she says Centrum is enough. She also tells me since allergy tested negative to stop Singulair and Pulmacort (but I only used Pulmacort for trouble w/ episodic bronchitis). I was diagnosed with intrinsic and extrinsic asthma (and gave her records from the last set of desensitization I'd received in mid-1990s). My PCP has re-started Singulair 2 or 3 times after it was stopped. Plus I took my Pulmonary Function Studies done in 2007 (interpreted by pulmonologist as 'asthma out of control') to the immunologist as it sure looked similar to test she'd run in Dec that showed Vocal Cord Dysfunction. Lo and behold she tells me it was VCD that pulmonologist missed (says happens a lot). Immunologist had planned 3 Ig IV then switch to home Hizentra sub-q. I can understand the ins. reluctance to auth sub-q when there is no fat to infuse this into, but what I don't understand is how the ins. can diagnose me with FTT. My immunologist tells me to plan on Mon. but switched my PCP follow up from Tues. to tomorrow after the other stuff at hospital (6:15 in morning). Oh, I forgot that I drive--is that safe with FTT? I eat small amounts but have to watch fat and sodium and 3 of my Rx have to be taken on empty stomach--which is a challenge when you are still belching up supper 5 hours later. I told DH next time I see immunologist I'm going to wear heavy pants and heavy sweater to go with whatever weight I hope to gain. Anybody have experience with this? I am not an anorexic or bullemic. What are these Rx supplements that have energy builders the immunologist was speaking in general terms about? (Not TPN or hyper-alimentation)? I had tried prioritizing all the appointments/travel (no specialists close to home) and put GI to first of Jan. since none of my docs had expressed any concern (and I get weighed at every visit--had even called PCP to request something for nausea when it was so bad on Mestinon--and she only told me I'd have to call cardiac specialist in opposite end of the state. His office was not too concerned since they took a month to call me back to tell me to stop the med). Thank you for any insight/input. I have to call my ins. Fri. (and prob Sat morn when they're open) because if this is still not authorized (since Dec--ins. tells me they've not received any requests), I have to cancel Mondays Ig IV

I didn't complete the poll because I became disabled after significant trauma from an accident. That being said, in my former profession of 25 years, there is no way I could make quick decisions, climb 5 flights of stairs throughout the day and cross 2 campuses, carrying books/supplies, standing (on feet) the biggest part of the day, multitask, round with physicians (and remember things needing asked/writing orders). The temperature variance within the campuses was quite pronounced and the bright lights and stimuli. I had to be excellent with communication and now I stop mid-sentence, forgetting what I was even talking about. I would have to be able to lift/raise arms above heart level when lifting (that wouldn't be 'doable' for me. I'm still waiting on the right mix of meds to get me hypertensive. I started Midodrine in September. Mestinon was added in Oct (but I could not tolerate the terrible stomach cramps and nausea that came with it) and they stopped the Mestinon in Dec. Now with my EDS and dysautonomia, fluid/blood pools in my legs and the potent water pill has me going for about every 10-15 min for up to 4 hours (if I wait too long in letting the fluid build up before I take the water pill, I have to take it 2 consecutive days to get the fluid off). I miss my old job and all the responsibilities/socialization that came with it but honestly now, I don't think I could get through a probationary period without an absence and I know I would not be safe to practice as I formerly had. Seemed like I lost my identity when I had to retire early. I had spent more time at work in all those years than I actually saw my own family. Now that I'm home, my family is grown and seldome here.

I rise and shine early for the most part as I have so many meds that have to get in on schedule--some with food, some on empty stomach (and with gastroparesis that takes all day). I get coffee (ready with hit of switch) and meds and eat something to have on stomach with them. Watch morn news and may nap before shower but start fluids after coffee. That's an all day/evening struggle sometimes, other times I can't get enough. I have hypersomnia so naps usually come in morn or afternoon--trying to fight it at dinner time is a battle. I start to fizzle out by later in the afternoon and by supper time, I am done. If it is summer (hot/humid outside), it is much worse of a struggle because I want and try to do things that I now have learned are no-no's. Winter (cold/wet here) I'm pretty much homebound anyway. I don't tackle any project unless I feel like I'm good to go. It may only get partially done, but that's more than what was done before. To me it is like when I used to bake/cook--if I wasn't in the mood, seemed like nothing turned out good, but if I was in the mood--everything turned out good. It seems similar with trying to do something if I'm feeling off to begin with.

I actually did have 3 spells after therapy, showering and rushing to dress because of near syncope--staggering to bed to lie fast--or grab big cup water to drink sitting with head down thinking/hoping things would pass. The heart would be tachy and I'd be hypotensive and low O2 saturation. Funny thing was that I'd felt fine in the water.

I always run low body temperature--sometimes they have to warm up fingers or body to get the temp to register up to a low normal. It makes it so hard to know how to dress if you go anywhere here in midwest with frigid cold temps in winter, or maybe heaters blow hot air too close to me and I feel as if I'm smothering, then comes the cool down cycle of the heaters that make me chill. I set the thermostat at 64 but sleep under down blanket and flannel blanket and with fan going (DH puts off lot of body heat, and when the heater--with register next to my side of bed runs, the smothering hot feeling will wake me out of sound sleep, kicking to get bedding off of me). Went to visit DS for few days over holidays and did not know what to wear (warmer down south but in single digits when I got home. It was really windy and cold wind the day after I got there and I had 2 coats--med and heavy duty. I figured that while I prefer cotton pjs, I took polyester to be safe in case the bedroom was too cool--but then DS and her hubby worried about me being too cold and cranked up the heat. I didn't sleep much on that visit. I packed for 2--to wear layers to peel off when heater on and throw back on when heater off and they ran around trying to kick it up if I covered up or kick it down when I'd peel layer off. I probably gave them a little dose of dizzy , but I did send them a nice gift card when I got home. ).

I had problems with motions sickness as a child but am now in my 5th decade of life. The syncopes began in Jan 2009 when I was at mass. As symptoms progressively/gradually worsened, it was not until this past spring when I was trying to ride my bike on a beautiful day that I knew I had to put it away (I loved biking outdoors). Then things really escalated over summer and spring to the point that I could not complete the simplist of housework even, or meal preparation, or carrying laundry from machine to hamper or bend down to pick something up. But when cardiac specialist explained things to me this Oct., he said this was the most debilitating summer for all his patients (all the days of 90 degrees and above and high humidity). Even tho I could do the re-conditioning/endurance building in physical therapy aquacciser treadmil this fall, I never regained my strength outside the water--these legs just pool (having EDS makes things worse).

I have dry eyes and autoimmune issues. All membranes are very dry. My opthamologist put me on eye drops and Rx'd Restasis and told me to use GenTeal at bedtime (the gel). The otolaryngologist added Evoxac (used with Sjorgren's) to moisturize everything but the flip side (while I'm taking it twice/day) is that side effects are the same as the dysautonomia (including fainting). But since swallowing and breathing are necessities of my quality of life, I am giving it a go. I agree that you should have your eyes checked by opthamologist--too many things that could cause eye pain.

I did aquaciser treadmil and loved it--my final session I did 70 min. but they keep the temp around 92 degrees (for my fibro and arthritis and no hot tubs/spas or things like that per cardiologist). I felt so relaxed but as soon as I got showered, changed and drove home, I was exhausted whereas I felt energized in the aquaciser. There is no place where I live that has warmed pool that will rent to individual for exercise. With wintery roads/weather we get, the nearest one recommended by therapists is at a Y in another big county about 30 min from where I live (and with gas going to $4/hr, that isn't an option for me). I find it strange that water (except ocean waves/seashore) doesn't bother me, but I got a galaxy tablet for myself for Christmas and when I turn that thing on, the way the things spin and whirl around to get to the lock page--well, I can't even look at it--makes me feel like I'm spinning.

I have same fears of side effects with gamma globulin. I was to have IV Ig but now immuno want to start with Hizentra sub q at home which I feel is less risky (the less invasive), I posted 2 days ago seeking support groups for those on IV Ig and 2 were given to me. When I read the blogs there are some bad side effects and it doesn't take much to go from headache to migraine. I have IgA and IgG2 and other compliment autoimmune deficiencies that put me at high risk for pneumonia, strept, respiratort/sinus/ear infections, meningitis to name a few. I have a page long list of medication allergies/sensitivities. idffriends.org is a great website to read what people are saying about their experiences with different brands. Looks like some get along alright but some have to change manufacturers. The Hizentra seems the worst as far as I can tell as it has the most concentration (thickest viscerally) of human antibodies. I am not looking forward to going through this the rest of my life, but I had just had a migraine (not taking anything) with BP 75/44 Sat morn, puking guts out Sat. afternoon and am only 90 lbs (with clothes on). Had to call DM (elderly living in another town) to come sit with me as DH was out of state on business. This Hizentra is also more dehydrating than the rest from what bloggers say. Some pre-med with tylenol and benadryl (or zyrtec), some have had to add small medrol 4 day dose pack and all say drinking tons of fluids day before and day after helps cut down on headache. I had a monthlong infusion of DHE for status migranous years ago and since I've not much subcutaneous tissue, always developed terrible cellulitis at the needle insertion sites (this Hizentra is much thicker than the DHE so it's going to take it longer to absorb). The other thing I read was that those on home infusions slow the rate down when symptoms become too aggrevating--takes longer to get it in but seems that not as pronounced side effects. I would still contact the ordering physician at Mayo to see what could be done. But this hopefully might lend additional insight. You are receiving human antibodies. If donor has some virus or thing going on that he isn't aware of when he donates, it gets passed on to you (in my case who am already too low in my own antibody production to fight the infections). A high BP like that is worrisome as I read this stuff can damage your kidneys. I already pool blood and fluids with the autonomic nervous system failing (and my kidney function is normal, so I sure don't want to mess up one of the few parts of my body that seems to be working okay). Wishing you the best.

I sense that my 7 1/2 yo GS is having issues with my health changes in just the way that he is seeming a little distanced and always afraid he 'hurts' me if he bumps or elbows me. He lost a g-grandmother when he was around 2 and then a step-g-gfather this past year. He has been with me when I fainted. I just try to reassure him. When I talk to him, I tell him that I saw the doctor for a check up and he told me things are good, or gave me medicine to help it be better (things like that). I don't know if it's smart or not but I don't know how else to handle things, either. I think he may think that I am going to die. We talked about it a little, how everybody dies some day, but how I hope to be around for as long as I can so I can see him graduate school and college and his babies, etc. When he comes over and I'm at doctor's I think he worries that I'm sick (when it's follow-up or something minor). I visited w/ my sister for few days when he came over and I was gone I was afraid he'd think I was in hospital. I couldn't call him as I'd had bad case of laryngitis (still getting over it) and I was afraid if he heard a squeaky whisper he'd think people were trying to hide something--worry that I was really sick. I try to make light of staggering around or having to sit down quickly. He's an old soul, very sensitive.

Thank you, arizona girl and anna. I bookmarked the websites. :-)

Someone had responded to a post and I cannot find it anywhere. Would anyone be familiar with support groups for those gamma globulin deficient people? Thank you so much.

I have EDS III and am a bleeder (Delta Granule Storage Pool Def) and have PI, POTS/OH/autonomic nervous system failing. It was about 20 years ago when things started really going south and got diagnosis of fibromyalgia informally around 1991 and formally in 1998. The hemorrhaging was 'grouped' under Von Willebrands until test was just recently developed. The EDS dx didn't come until 2005. It has been a long journey. While I've always been 'sickly', it was not til seeking services of Infectious Disease doctor for osteomyelitis (and continued infections with further researching into my immune system that the PI was diagnosed). The neurocardiogenic syncope started 3 years ago and POTS/OH diagnoses came in 2011. It has been a very long journey and still not done (I've appointment that have put off too long to see my GI about what I believe to be gastroparesis). I'd always believed too that things were related. Certain things are hereditary but being one of the oldest of 7 'kids' and coming from family that is insurance poor, some of my sibblings (and son) show an awful lot of similarities healthwise as myself. So I've been the educator for the family.

So here is where things stand today. My ID set up gammagard infusion (IV, monthly at Infusion Center) but that was not same as immunologist/allergist/pulmonologist at University MC had discussed w/ us--said something about 5 days consecutive then once/monthly at home. Still not hearing from Infusion Center at University who according to the University specialist's office in Dec. was getting IVIG authorized by my ins., I called specialist to ask what agent (2nd call and an e-mail not returned) and which infusion center. Nurse called me late today and said it is Privigen and told me the Infusion Center site but added that 'they do not talk to paitients. . .and it is their responsibility to get the authorization. . .we don't do that in the office anymore'. So I called my insurance to see where things were in this authorization process and they'd never received any requests from University. So I 'MyChart'ed again to my specialist at University telling her that her office and infusion center are giving me run around and my insurance tells me nothing has been requested to be authorized, asking if someone could please help. I also called the Infusion Center (still with laryngitis since Christmas eve, barely able to speak) and the girl did get to a nurse and told me they only had an order for the Privigen (but no dose/frequency, etc. from specialist--yet they had called me 3 1/2 weeks ago ready to set appointment for me to get my dose???). The infusion center told me they'd contact University specialist to get the infor they need. The University specialist called as soon as I e-mailed. She told me that now instead of 5 consecutive IV infusions, she thinks it will be alright to just procede with sub-cutaneous injections with Home Health Care considering the long travel and wintery roads. She said their office will work on this tomorrow. The Infusion Center at Infectious Disease offered to check w/ my ID and pharmacist to see if it would be ok to do IV Privigen (still do it once/monthly). My ID doc mentioned that it's cheaper to get it in infusion center (IV) than the overall cost of home care/home pharmaceutical supplier and the cost of equip. My insurance company still does not have the benefit book available on-line so I can't tell anything about what my co-pay will be for HHC vs Infusion Center. Anybody have any experience with this? Thank you all so much for your patience and guidance.

I'd put it off long enough too and bit the bullet today to go ahead and get into my GI. Hate going through another battery of tests and had been trying to wait til all the Jan appointments were done, but guess I really should do it (especially since seeing an incidental finding of atrophied pancreas when they checked my aorta via CT scan--PCP got a copy of the scan but made no mention of it).

I don't recall seeing the goosebumps for a while but I feel like ice water is running through my veins and the scalp still gets tingly like when I had goose bumps (probably med and/or hormonal related?).

Thank you, futurehope. This scares me but how red and inflammed the larynx/cords were and the difficulty with swallowing/breathing is a scarey thing too. I have to take some speech therapy--therapist told me she would teach me exercises to help with the breathing (things in the throat shut off at the end of the exhalation phase that makes me feel like I am not getting in a good breath. I have to see him back in a couple of mos. for repeat scope. He wrote 6 refills. The nurse told me the Rx is used to treat Sjorgrens (but he was not diagnosing Sjorgrens--but I sure do have a lot of the symptoms). I'm really iffy on this one but trying to keep close watch and wait to see if incidental, if the body acclimates or if it makes things worse (right now, am thinking it's making my pressure a little lower but it may just be coincidental since I am sick again).

I was recently diagnosed with Vocal Cord Dysfunction, subseqently had nasolaryngoscopy and found to also have chronic laryngitis thought to be from GERD that Rx isn't handling enough (also have gastroparesis issues), and chronic post nasal drip, immunocompromization (starting IV Ig), and found membranes to be extremely dry. Otolaryngologist said some of my Rx's cause dryness (I take Midodrine 10 mg 3 X/day that still leaves me with low BP) and a water pill once every 4 to 7 days depending how much I've had the legs down/what I'd been doing--guage the need by the amount of pooling in legs. He initiates Evoxac that the says will help increase the secretions in mouth, gut, sinuses, throat, etc. He said it would help with my lips, too (which I'd never mentioned as every doc/dentist I've asked--they peel off constantly to my face and are raw--since they all tell me they don't know 'must be an autoimmune thing'). His RN and paper they give me about the med list most common side effects of this med as: fainting, excessive sweating, nausea/vomiting, diarrhea, heart rate too fast/too slow/irregular, etc. Seems like these are all the symptoms of my near syncope/syncopal episodes. After just a third dose (and not knowing if due to med or incidental from headache that turned migraine) yesterday morn, I'd felt the BP dropping when I had got up to void thru the night and could not get to sleep til after 4 a.m. When I did get up and brush teeth, had to rush to get down and BP was 75/44 HR 78. This morn when I got up it was 86/58 and HR 103 (getting out of bed/brushing teeth). My BP is usually borders low when I get up but am wondering if this is tipping the envelope a bit. Anyone familiar with this? Does it just take a while for body to 'acclimate' to the drug? I'm still waiting on cardiac specialist to initiate another agent to get me hypertensive since I didn't tolerate the Mestinon. I had vomiting and severe nausea yesterday but am not sure if that was from the migraine or dysautonomia being exacerbated. The University otolarygologist was aware of my dysautonomia but still felt this Rx was warranted (and at $85 co-pay for me).