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Everything posted by mrsdavidson8605

  1. Hello everyone. I haven't been on here in forever. Didn't even know there was a new look to the forum. I was doing "ok" until about mid June when I started having horrible stomach pain. Long long story short, they FINALLY, sort of, maybe, said I have crohn's disease. I have a small portion of my small intestine that is infected and my blood tests are conducive to crohns. All other tests have come back normal so they are still debating if that's really it. meanwhile, I started taking MANY different meds. Finally, tough steroids seemed to be working until a couple weeks ago. Then it hit again. terrible stomach pain. The odd thing is I have constipation with it which is not normal to crohn's patients. That's why I'm wondering if this is POTS related. I know my POTS has gotten worse bc my tilt table test showed I passed out in 6 min not 14 like 4 years ago. So i'm wondering, could this be slow digestion? If so what on earth can I do to get out of this living ****?! I tried Reglan but it seemed to make me anxious. I'm taking 2 doses of mirilax a day. Any ideas would be helpful. thanks.
  2. Thanks so much for the info. I will try the Miralax tonight. I actually have some bc I give it to my daughter for irregularity. Will also get some culturelle and see if that helps..
  3. I have had constipation. Had some nausia at first but it is gone. I don't have much of an appetite because everytime I eat my stomach cramps up like crazy. HAd a little bit of diahreah but mostly constipated. They have been treating me for IBS but none of the drugs have helped and now they are telling me to just wait until my colonoscopy on August 6th! Can't deal with the pain that long!
  4. I have had abdominal pain for 3 weeks straight now! Just came out of nowhere! I was hospitalized 2 weeks ago and they ran a bunch of tests but never found anything. Been taking all sorts of different meds to try to attack the pain but nothing helps. I know there are relationships between pots and abdominal pain but I need to be more educated on what it could be. ANy info is helpful. thanks.
  5. I am scheduled to see Dr. Jager at the Cleveland Clinic on July 7th. Any suggestions? Anyone going to be there between the 6th and 10th? If so let me know!
  6. haha thanks for the laugh! And yes I totally agree. If all I had issues with were things like acne or sensitive teeth I would be thrilled. I also get tired of people whining about getting a cold.. good grief. LOL oh well...
  7. I just feel like I have the flu. Achy all over, etc. Hard to describe. Is this a normal POTS symptom? I feel like this has become more of a problem than any other symptom. Also have burning down my spine and arms... I know it probably is a POTS thing, just curious if anyone else has this problem..
  8. Just wanted to say hi. I haven't been on in a while. Basically because it's too hard for me to read the posts. I get too sick after reading for a long time. I feel like i'm starting to have more and more "Bad" days than good. Trying to keep my chin up but it is very hard. Just passed my 3 year anniversiary with POTS. Seems like I can't hardly remember a life without it now... sorry if I sound like debby downer, just very frustrated.... AFter fighting my insurance company to pay for the epogen injections they denied it. So that is out the window for me. I am getting weekly IV treatments now, but I am not seeing much of an improvement there. Maybe for 24 hours. Anyone do it on a more regular basis than once a week? I am also fighting for disabillity. Been working on that for almost a year now. I think i'm on my second or third denial, next step is for the attorney to request a hearing on my behalf. Any suggestions? We could really use the benefits! Finally, our support group in Wichita is really getting off the ground. We have 3 members now (ha I know that doesn't seem like much but it's a lifeline for me to reach out to someone who is going through the same thing!).. We are thinking of having a regional meeting coming up in Feb. so if you or someone you know lives in this area and would like to make a trip to Wichita, let me know! We are going to try to get some local physicians in to have discussions about POTS/NCS. Take care everyone. I'm so glad I have a place to come and vent! Rachel
  9. I registerd then tried to log in and it didn't work. Didn't tell me anything was wrong with my password, just kept brining up the same log in screen. i'm so confused!!!
  10. I keep having the burning feeling in my spine and legs and arms. It continues to get worse but my PCP just blows me off. It is soo frustrating! I am SO WEAK. My only option seems to be the Procrit injections but i'm just very uneasy about it and am not convinced that it will help... I go back to those floods of emotions of feeling like i'm going to die before someone figures out what is wrong with me... it's so un nerving! Speaking of nerves, anyone else get very "worked up" over like shocking news or something.. I was watching the news today about a police officer who was shot and killed (my husband is a cop so I have personal ties to those feelings!) and I got goose bumps and a RUSH of adrenaline and just felt like I was going to cry. Kind of a "woosh" feeling came over me.. so strange. Can anyone relate? This probably doesn't even make sense. That's what brain fog and severe fatigue will do for ya
  11. I know how you feel! my daughter is exactly that age.. almost 2 1/2! I feel VERY guilty sometimes that she is not getting enough interactions. But I try not to blame myself too much and do the best I can. Fortunately my husband is very helpful. He takes her to church when I can't and she gets to play there, they go to the park, etc and we try to make the weekly play gorup but it doesn't always happen... but trust me, I'm in the same boat. Just hang in there, you're doing a great job! We can only do what we are able to do.
  12. i've been in a flare up or whatever u want to call it for about 3 weeks. I am so weak, can't think straight, blah blah blah. But I've also got this burning/numbing feeling down my spine and my left hand goes numb a lot... anyone else get symptoms like this?
  13. We looked into Procrit before but it's so expensive. Is Erythropoietin the same thing? I'm totally confused and this is probably a dumb question. I'm also very nervous about taking this medication. Also insurance may not even pay for it so who knows. I just want to feel better. I read that it works in 80% of patients but then later on does not help with heart rate.. if you've taken it, please share your experiences!! I'm at the end of my rope with all of this
  14. Absolutely! I totally understand what you are saying! I wake up in the middle of the night weak just feel horrible all over. Hard to describe kinda achy flu like.. for me though its heat. If I get over heated at night it's worse so our house is always like 68 or 70 degreese... but I totally relate to what you are saying. Strange..
  15. Well it depends on how the insulin is measured because they all measure it differently.. I think 10 is a normal fasting range but my fasting insulin is usually normal. My dr ordered these other tests (the 72 hour fast, which I wouldn't reccomend and the test where they give you a specific breakfast loaded with protein then draw every 30 min for 6 hours). She said the GTT was not reliable because it just overloads your body with sugar and is not a good way to monitor glucose and insulin.. which makes sense. I would reccomend having the other tests done. You need to have your insulin and glucose drawn at the same time. 55 is low but criteria for dx of insulinoma is less than 55 I believe. But it also has to match with the high insulin levels to get that dx if that makes sense. So yes I would get re tested. Many drs will tell you that since your fasting insulin was fine that you don't have a problem but that is not correct. They need to look at the whole picture. I have been fighting drs on this for 10 months now!!! I think this insulin thing has become more of a question mark than the whole POTS symptoms ever were. I think it's very interesting that EVERY time I post about this on here, I get several responses of people who have had the elevated insulin but then don't get an answer from the dr as to what is going on. Keep searching and eventually we will find the answer :)
  16. Broken Shell, The test has been done theoretically 3 times now. just in different ways. So yes the values have always been high. Around the 2nd hour after eating they go up about 2 or 3 times the normal amount then crash but never go back to normal range. when the insulin was 409 my blood sugar was 94. When you ask if I was having symptoms, it's hard to answer because I have symptoms all day so probably. Yes she checked the proinsulin and C peptide and they were ok. We are going to do the scan of my abdomen wed then I have to wait FOREVER (like 4 weeks) to see her for those results. If nothing comes of that I may have to re do the 72 hour fast to get the results that the insurance needs to get a dx but she may go ahead and fight the insurance co for me to just be able to keep looking for the tumor since the levels are so eleveated. I do have a glucose meter but have stopped trying to catch it because it goes low very fast and by the time I feel really sick it's back up to normal. I've worn a continual glucose monitoring system and my levels have gone low but not low enough (I think like 50 was the lowest). Hope that answers your questions. Thanks for responding!
  17. Thanks for the encouragement. Well I went to a smaller hospital (I live in the metro Wichita area and decided to go to a more rual hospital). And that was my first mistake. haha.. They didn't draw the labs at the right times and what they did draw wasn't enough/didn't run correctly for the correct results. Needless to say I was VERY upset! I didn't eat for 3 days, looked like a drug addict after being stuck almost 30 times, and had to recover for about 2 weeks (because of course my POTS went out of control after all that)... ugh! The second test was MUCH Better! they put one of those bigger IV lines in and just drew from it (duhh why didn't they think of that the first time??) So I only got stuck twice..
  18. Hi, I would suggest having a 72 hour fast done like I did or doing the new type of test where they just feed you a breakfast and then draw insulin and glucose every 30 min for a total of 6 hours. I'm not getting "hypoglycemic" really either but my insulin is so high it is something to be concerned about. I think the insulinoma is still possible without those symptoms.. I have had some cysts rupture on my ovaries before. Are you talking about MEtabolix Syndrome X or whatever? When they first discovered I had the high insulin they put me on Metformin which is a drug for diabetes patients but it made me feel much worse so they stopped it. That's where the concern about the insulinoma came in. I wonder if that is what is causing me to have the cysts every now and then. interesting.. Thanks for all the info. Rachel
  19. Ok so I don't even know where to start i'm so brain fogged and frustrated. Been running around in circles ever since last october when I had that blood test that showed my insulin levels were high. Started going to a different endo. She wanted to run the test her way to make sure. First test was a 3 day fast in the hospital. long story short they messed up the labs and after being stuck 29 times I had to stop the test early , and they didn't get the results they were looking for. About a month ago went in and did the test a different way. Had a breakfast prepared by the hospital then had lab drawn every 30 min for 6 hours. Went back for results today. She needs to have my blood sugar go below 55 in order to be able to make the diagnosis of an insulinoma. My insulin levels are rediculously out of control. At one point (I think an hour and a half after eating) my insulin was 409 with the high end of normal range bieng 120. Dr said this was very concerning to her but she is limited on what tests she can do to find an insulinoma bc I don't meet the criteria. She said my body must be compensating and keeping my blood sugar up .. for now at least. So she went ahead and ordered a scan of my abdomen to try and find it but said insulinomas are very hard to find. I'm so frustrated with all of this!!!! Anyone else been through this? SHe said I could try the 72 hour fast again to try and get the right numbers. Doesn't that just sound torturous? I just wonder if I should go to yet another endo who would say screw the numbers and go ahead and fight the insurance companies.. or can they even do that? geeze this is rediculous that I have to deal with this! I want to be able to rule things out and this has hung over my head for almost a year. Any insight would be very helpful. Thanks.
  20. I've had a headache like pain in the back of the head for a couple weeks now. Like a burning pain. My memory loss is worse, and now i'm dizzy and sick to my stomach. I've been to the doc a couple times and he just treats me like i'm crazy (unfortunately i'm used to this). He did finally schedule a CT for tomorrow to make sure everything is ok. I did have an ear infection a couple weeks ago.. wondering if that is what it is.. I'm so tired of feeling like crap all the time!!! just had to vent...
  21. She is doing better this week. We are trying really hard to keep her on schedule. I have had her to the doctor and she is fine (she does have UTI's sometimes but those are under control). She is just really stubborn and going to push the limits as much as possible. Thanks everyone. I'm glad things are smoothing out. She still cries when we put her to bed but it's no where near what it was and she hasn't woken up in the middle of the night for a few days now.
  22. Thanks everyone for the replies. Just wanted to clarify i'm not post partum my daughter is almost 2! lol... and I only have one child. I have had my thyroid checked several times before. I'm not emotional or anything just had a breaking point early this morning when she was screaming. I do appreciate all the kind words. I heard about the terrible twos but had no idea how bad it really is!!!!!
  23. I just need to vent bc it's 4:30am and my daughter is screaming AGAIN. this messes me up so bad with my POTS. The noise is horrible for me. we've been going through this for a couple weeks. She has trouble going to sleep then gets up at least once in the middle of the night. We are letting her cry it out (after we check on her of course) but it's killing me with my POTS! Anyone have small children with this similar problem? how do you manage? I haven't gotten much sleep either which is also a big factor.. I just want sleep!Maybe we can ship her off to grandma's house tomorrow night! ha
  24. i'd love to meet but I live in Kansas so a little too far.. i can't imagine living in AZ with POTS! i thought Ks was hot! whew!
  25. I saw it on the news today. But I try not to panic because there is nothing that we can do about it. Try to stay positive and hopefully they can get a handle on it before it gets too bad..
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