Sophia3

Thanks for the replies. Sally, that would be me...weak!!!! That's the word!! not just tired but WEAK!! And brain fog....just lying in the bed it's tough to use the laptop. Chicken livers for dinner tonight, by the way!! Mashed potatoes and green beans. Place close by has good drive thru. I was happy to find out baked potatoes had iron as I had been craving that and steak/red meat for WEEKS!lol

Wow! Thanks, Melissa. I remembered when reading something a couple hours ago about the Ferritin stuff being 'more exact'. about 5 years ago I saw a rheumatologist and he ran the complete ferritin panel of REAL IRON testing and it was all normal but of course, I don't have the results... maybe it's something I need to talk with my ANS doc OBVIOUSLY in 7 weeks or when I see him. Wow...I wonder if those could be off on me. I hate I didn't think of this stuff but they don't call it BRAIN fog for nothing. You obviously have some GI stuff going on indeed for hidden bleediing...I have had horrible periods for years (heavy) but the last several months, they literally wipe me OUT..and like I say..I BARELY make progress...have a few good days ( by my standards, not normal folks) and another STINKING period!! But the OI is unreal. Thank for my MUCH needed reminder (after the reading I did earlier) on things to address with my endocrinologist. My Gyne Nurse P --who I have only seen 3 times, was nice enough to give me the paperwork for the CBC as I am around the corner and up the hill from their small suburban, one doctor office. My ans doc is a 45 minute drive. Ha, like I am going to drive that far these days. Thanks Melissa for the enlightenment on the "real iron absorbtion" test. I wish I could get those tests done NOW but it wouldnt' hurt to follow up with things to see how I am absorbing the iron. Good luck with your infusions and I hope they jump start you! this being so RUN down STINKS!!

Thanks, Melissa. I have been Chronicallyfatigued for years but the last several weeks have been downright scarey. The sicker periods have just left me TOTALLY SPENT and by the time I have the slightest recover.>*GUESS WHO! ANother period shows up?!?!?. As I said to somebody, it's pitiful when brushing your teeth and flossing wears you out, while sitting down. I have electric toothbrush but haven't taught the cats to help me floss. I push to do the SIMPLEST of things and then crash and sleep (even tho the insomnia is STILL ROTTEN) for 8-10-12 hours during my period. UNREAL&^%$#@! Then somebody said if dehydrated you can have false high readings of hematocrit?! I wonder if that means my hematocrit is even lower?? Who knows....but I am tired of NOT being able to leave the house except for 3 minute jaunts to library/pharmacy/food drive thru. ..and the past week couldn't do that or get out of my jammies for days. Thankfully I have a room mate who is here in the evenings but geez...it's HORRIBLE to have coped with severe limitations for years and then, to find yourself scared at "what the HECK is happening here?"..the last few months. You are getting iron tranfusions? how low does your Hemato and hemo have to be to qualify for that I wonder. Good luck with that and let me know how you tolerate that. thanks for the link

Got this new Repliva iron tab with Vita c /b-12, and "special forumulation absorbtion" properties...or so the box and wes site tells me!! My hemo globin was just down about a point and a half but my hematocrit is 32. I forgot to ask how long before I feel a difference? I guess it will vary from situation to situation but I have no clue and didn't or can't call the doc tonight to ask. I have read in some cases it can take a MONTH or two??? I am hoping energy levels improve before them. But this HORRIBLE fatigue that has been with me the last few months...I HOPE it can be improved from the iron build up. You take this supplement 21 days, then off 7 days to let body absorb it. I may not take it on a day I eat a high iron meal like liver!! As I am doing ok after a couple doses but feel "off" a bit n the abdomen and don't want to risk problems. I rarely if ever have constipation issues in the last 10 years but my insides feel tender. Now if only I could afford the Procrit at $2000 a shot! Ha. Would be curious to see what that would do.

The first photo shows the back of the dress and it's hard to see, but she said there were red marks from one of her falls!!

I haven't ever fainted right out but always have warnings...the spins/vertigo/kaliedoscope of blurry vision/greying of vision and STRONG desire to be vertical. I have POTS and even when pushed to sit or stand a couple minutes longer I just get very nauseated and hot ( but don't sweat) and have to lie down. I spend much of my state "pre-syncopal" as do many others that don't flat out faint. We stay IN NEED of support...bed close by, for some wheelchairs work, especially the reclinind kind. I have been known to lie back car seat and put feet on dashboard (Not to DRIVE LOL, but rest after leaving grocery store and thanfkully where I hve lived it's either been a 5 or 3 minute drive home) So here, unless you are a flat out fainter, especially with little to no warning, folks can drive. THAT SAID, there are many days I am just too, too lightheaded/dizzie or whatever the rotten feeling is and I will not drive. The BRAIN FOG is dreadful on these days as well. So many of us that drive know NOT to on some days...at least, that hs been my experience. But yes, fainting can get you in trouble in the US as a driver as well. If something happens, and the courts find out you have a history of this ...I don't know how they react. Many folks have seizure disorders and or narcolepsy and drive but have medications to avoid it. So...but if you are totally disabled, you have to be your own watch dog...in more ways than one!

Thanks for the quick repies. This new Repliva is "alleged" to cause LOTS LESS distress. I never have a problem with constipation in recent years...more like frequency issues that can wear me out. I JUST WANT TO be able to STAND STILL!! This med is VERY EXPENSIVE but they gave me a 30 day supply. Course getting the hermetically sealed IRON wrapper open is another story! I used to get an easily absorbed iron from Kroger...I forget the name but it was easily absorbed...if this stuff helps, I will probably go back to using the other brand. Also I have felt so puny I don't take vitamins so that hasn't helped either. So, lets see if I can get the energy to do BASIC THINGS again...sponge bathe AND laundry in the same day. I sit to put on makeup when I wear it but flossing teeth wears me out! LOL. It's such a little thing but man that triggers lightheadedness. But haven't taught my cats to floss my teeth for me yet. . . .

-------------------------------------------------------------------------------- OK, from monthly female junk, am anemic...have always been some...in this case Hemoglobin is 11.3 (Normal. 12.6) Hematocrit 32.3 (Normal 36) The gyno office wants me to pick up some iron tablet samples to see how I tolerate them. I forget the name, prescription and called Repleva? Going to try to see how G.I. tract tolerates. They claim these are easy on the stomach. All I know is waking up I always feel ROTTEN but lately SUPER ROTTEN and my ability to STAND STILL pretty much stinks. I need to walk fast (to keep blood pumping) and hang onto shopping cart for dear life in grocery) I only go out when desperate for food, coffee or Gatorade and sometimes room mate can go. I HATE how the handicapped spaces are all taken. Yesterday, I went to the pharmacy that doesn't have a drive thru and SOME YAYHOO had parked a huge car in TWO HANDICAPPED SPACES...with no tag.&^%$$^!%!& I was able to sit or kneel on chair while talking to pharmacist. In grocery line, I do the typical exercises to keep from getting too light headed (Toe raises, squat down to read magazines/look at cand/tie shoes, fuss in purse. I DID walk yesterday for 18 minutes but it wiped me OUT once I stopped. It was 72 out and I am afraid my constant bed rest of the last week or so is turning me into an invalid. My O.I. has NEVER BEEN THIS BAD. If we had wider hallways and access to a wheelchair, I think I would've used it his past week. Standing still and sitting still has long been the enemy to some of us but this is just dreadful. Like CONSTANT verge of fainting junk..can't think, spell, even talk. So, I hope the iron pills help. THANKFULLY I drive down the hill and around a corner and there is doc's office for the samples. Get in the car, count to 100 and I am there. If this doesn't work, it's back to chicken livers for me (thank goodness I like them) and I do cook the rare times I cook, in iron skillets. Chicken livers are expensive to order at carry out but they do taste good. But SITTING UP at my room mates computer wears me OUT and even this laptop is wearing me out. Thanks for any iron users out there to give two cents.

Morgan, Man, that has to be so scarey after years of being sick.>SUDDENLY fainting and with such frequency. I wish we could get some doc in YOUR AREA to order a new TTT. Something is definetly awry and big time. XOXOXO Soph Can't wait to see pics

Mine hangs on rearview mirror and is good for 5 years. But my being disabled and on premature Soc Sec and semi housebound made my situation very easy to get one. I went to the DMV one day and they even told me to sit in a chair on the side rather than wait in line (VERY nice as most folks that work there are very cranky) But I don't know if it varies from state to state but I am pretty sure my temp placard is good for either 3 or 5 years....I think it's 5. But here locally, docs are accused of giving them (Handicapped tags) out too easily so maybe they are cracking down and you need an ANS doc to explain the fluctuations.

yea, I can tell by the coloring as well..though when I feel more ambitious, I may dig out my measuring tape and try this tip. Oh, Dr. Streetens book from years ago, had gruesome photos, if I remember correctly about huge swelling in legs.

hmichel I also am sorry you don't get more support from family...I do from my sister and mom, but my brother never calls or comes around ..but then again, my sister doesn't hear from him either!? But he isn't somebody I could ask a favor from...I just know he and his wife "dont' get that I am so ill". but it must be MOST difficult when you need transportation for such a trip, and long distance cab services are expensive and that is a real issue. I hope you can find somebody to drive and to help out with your little girl. Also that your tilt gives answers to help your situation and get relief. Good luck with all your challenges.

I had a D&C in the last 80's and it didn't do squat for the bleeding stuff...that is why I am so leery of it helping with the ablation where they BURN OFF THE LAYERS. Some women claim they rarely bleed again...just spot. If I had that in writing, I may consider the procedure. Will discuss with my ANS doc but with hormonal problems...just don'tknow. THanks for the replies.

Anybody ever had uterine or endometrial ablations to slow down HEAVY bleeding? Hyst is way too drastic but am getting blood work to check anemia and stuff tomorrow. I am wanting to investigate this...would like to hear IF FOLKS have had it done. I am reading online about it but want to know if somebody has been through it. Thanks P.S. also did it help with POTS symptoms since I can hardly get out of the bed with this monthly ambush. I would have to think that lighter or no flow would help. BCP and hormonal treatment did NOT work.

Good luck..these kind of meetings are always stressful. Please give us an update as soon as you are rested. S

Gosh, if you don't qualify? who does? I send prayers, thoughts, energy, and common sense to TPTB ;that they pay for this power chair. A thump on the head to make a doctor come around and write a letter might help, too. Hope you get the support you deserve to get said chair. Sophia

Janine MAJOR Kudos for having the spunk to call Mayo and get your stuff faxed!! CLEVER. And to whomever fired their Gyno, smart move.

carolyn, WOW ..that must have been a drag to have such a reaction but I had the same thing years ago from only 24 hours. Dizzygirl the liquid does work quicker. however the generic I use does have dye in it..I think there is a benadryl fee clear of color but twice the price...a small bottle lasts me forever. Good luck, kiddo and walk a flight of stairs or too to trigger an episode...just have somebody walking next to you!!! Carry some heavy dumb bells, too! Just kidding..be careful and I hope they get some great info and the stuff doesn't itch you too badly.

Dizzygirl That sounds exciting to wear something that so many folks can be aware of what's going on with your heart. Good! Are you allowed to push yourself to trigger an episode? back in 1992, before we knew my stuff was ANS related, I wore some 24 hour monitor. Well, I still worked out 3 days a week back then and went to the gym. Normally I used the treadmill because the stairclimber WORE ME OUT (any my knees) Well, my HR was high but the read out only caused concerned when I got to the time I was at the gym!! LOL. So I fessed up and said what I had done. Course now, I can increase HR that much just getting out of bed in the morning and doing normal stuff. Now I could not do much at all. My O.I. was more intermittent and mild in those earlier years. But since you faint that would not be wise to push yousefl unless surrounded by mattresses on floor and a friend to help! I hope you get some REAL VALID answers with this. It sounds great. Let me know if you get free HBO if you stand next to the TV...J/kidding! Take care and I will look for updates about this gizmo. I am glad others have been helped with such modern technology. p.s. Oh, can you handle childrens liquid benadryl ?...in case you get itchy from the pads? I use it sometimes when i have had reactions. The Kroger generic works...but ask your doctor. Sophia

J I can NOT BELIEVE the rotten day you had..and they left you high and dry without some meds. That is so cruel. I can not even pretend to understand your frustration after you went in armed with info. I wish there was something to be said to make you feel better but when your in the middle of the disappointing vortex...just have to work thru it. I hope you find somebody wiling to help you...>SOON~~ Be kind to yourself and let us know if anything changes. Sophia

I am glad you are getting a TTT done but INTEPRETATION is everything. You need not faint to get results. My HR raised 55 bpm as soon as I was tilted up..in under a minute. I felt ill, hot, sweaty, panicky, short of breath..all sorts of things DURING the test....then when they raised me down my HR dropped but to normal level. The dimwit, there for my then cardio said "the test was INCONCLUSIVE and I may just have to make lifestyle 'adjustments'. HELLO!!! I had been disabled 8 years already, I wanted to say. So I was driven home despondent and feeling SO DEPRESSED. ONLY to later be told in my appt with the cardio I had seen in OFFICE (who had warned me he might not be there for the tilt as my 'insurance' made me go to hospital he only went to once in a blue moon) that the Tilt did INDEED CONFIRM my endocrinologists and my suspicions. So between 2 docs in the same group "read different results". You need a doc savvy in autonomic problems and orthostatic intolerance to interpret. BUT if you feel ill during the test, that right there is your answer especially if you have HR and BP variances. I never did faint but did everything but throw up!! My vision even went black. So the test is non invasive and if done properly..the room should be dimly lit and quiet. The idiot cardio that sat in on mine chatted softly non stop to the techs!! He was such a horses rear end...but I am glad the "real doc" knew what was going on. Yes, yes! Get a copy of your test.... Best of luck to you ...and if you have fainted...this test will be nothing. Fainting isn't for sissies and your docs attitude is really annoying.

Janine I am not going by the hype, as I am surprised it is JUST NOW NEWS to mainstream. There have been many, many stories over the years. back when I worked my last year in OB GYN office, only more enlightened docs were telling pregnant women NOT to eat tuna due to mercury damage of fetus. Now that is common knowledge. But I know what you mean about the media whipping folks into a frenzy. The only thing new to me was the raw sushi alert. but that is't the first time I have read that either. Dr Weil and Mercola both talk bout the safe fish..mainly wild salmon. It's too bad what "used to seem safe" the farm raised fish is so polluted. Then again, look at the mega agriculture industry where chicken and hogs are stacked in tall buildings and never outside...and cows just as sad...but I am getting off my own topic! Still, we are free to choose our own eating habits...but the mercury and other politics were studied by my nephews when they were in college years ago. Both got out of the industry when the realized the offenders were always "warned" when inspectors were coming in..I am sure it is the same with farming and fish farming. p.s. the larger the fish and the older the fish has much to do with this as they eat the smaller fish also pollueted. so it ends up in their system. The river in areas where I live have not had safe fish to eat for DECADES!!! *edit* Janine, the fact you have been tested is a good thing since you eat a lot of fish. so that is very good. http://search.drweil.com/search?site=my_co...+fish&x=32&y=10 this is Dr. weil site that tries to explain

Dana Reeve herself said life was not fair but dang...she had more than her share...I heard she was looking fine in January when she sang at a function. Tragedy indeed for the young son....Hope he will be ok....

The news is breaking everywhere. Very sad. She had such a challenge caretaking Christopher...and then her lung cancer and she never smoked. Very sad for all involved. R.I.P.

Boy, it's really sad seeing the NEGLECT in following your pacemaker. I can NOT imagine being in your shoes and some doctors not getting on the horn to GET YOU SEEN. I am not sure I followed your story completely but hope you get the care you deserve SOON. Do keep us posted. Good luck.