byjove
Ruby
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Post by byjove on May 9, 2024 9:09:41 GMT -6
wedding, question for you. I picked up a Dexcom G7 as recommended by my PCP and I see results can be wonky for the first 2 days, but I am frustrated because I keep getting readings in the 40s and it sends me alarms. Based on symptoms and finger pricks, I know it's not accurate. Do you find it's like this for every new sensor? Do you have the freestyle? Something else?
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AmyG
Ruby
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Post by AmyG on May 9, 2024 10:06:38 GMT -6
wedding, question for you. I picked up a Dexcom G7 as recommended by my PCP and I see results can be wonky for the first 2 days, but I am frustrated because I keep getting readings in the 40s and it sends me alarms. Based on symptoms and finger pricks, I know it's not accurate. Do you find it's like this for every new sensor? Do you have the freestyle? Something else? Not wedding. But dil has the Libre glucose monitor in her arm right now day 4 I think. First couple days was not super accurate. 4 low alarms at night where it said 40 but she was 100 on her Calibrated tester. So she said she wished she had the dexcom she had a couple years ago as it was less false lows. But last night it caught a low in middle of the night that was showing 38 on tester and a bit higher but still low on finger prick. |
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byjove
Ruby
Posts: 16,747 Likes: 89,352
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Post by byjove on May 9, 2024 10:28:35 GMT -6
wedding , question for you. I picked up a Dexcom G7 as recommended by my PCP and I see results can be wonky for the first 2 days, but I am frustrated because I keep getting readings in the 40s and it sends me alarms. Based on symptoms and finger pricks, I know it's not accurate. Do you find it's like this for every new sensor? Do you have the freestyle? Something else? Not wedding. But dil has the Libre glucose monitor in her arm right now day 4 I think. First couple days was not super accurate. 4 low alarms at night where it said 40 but she was 100 on her Calibrated tester. So she said she wished she had the dexcom she had a couple years ago as it was less false lows. But last night it caught a low in middle of the night that was showing 38 on tester and a bit higher but still low on finger prick. So far the only value that seems to be real is my fasting. Which is also the highest value the sensor has registered. That's good to know. |
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Eagles
Opal
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Post by Eagles on May 9, 2024 12:03:01 GMT -6
I gotta decide who I see next as we play wack a mole. Pelvic floor pt thinks likely it's all piriformis. I have some pelvic floor issues, still some hypertonic muscles and side effects of botox on urine and stool control. I see pain dr next week to evaluate how well piriformis injection helped. Right now it's still kinda meh. I'm on orders to limit movement as much as I can so it can take full effect, just stretching and pelvic floor exercises. and it's hard to stay below 1000 steps. Has anyone mentioned cauda equina to you? Your comment about incontinence is what made me think of it. That's why I needed the pelvic MRI to rule it out. |
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AmyG
Ruby
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Post by AmyG on May 9, 2024 15:07:38 GMT -6
I gotta decide who I see next as we play wack a mole. Pelvic floor pt thinks likely it's all piriformis. I have some pelvic floor issues, still some hypertonic muscles and side effects of botox on urine and stool control. I see pain dr next week to evaluate how well piriformis injection helped. Right now it's still kinda meh. I'm on orders to limit movement as much as I can so it can take full effect, just stretching and pelvic floor exercises. and it's hard to stay below 1000 steps. Has anyone mentioned cauda equina to you? Your comment about incontinence is what made me think of it. That's why I needed the pelvic MRI to rule it out. Nope my symptoms aren't quite that at all. I don't have incontinence as my problem is being able to go pee and poop after getting botox. Thanks for the suggestion though |
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byjove
Ruby
Posts: 16,747 Likes: 89,352
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Post by byjove on May 10, 2024 17:37:29 GMT -6
I ended up contacting Dexcom and we think it was faulty. They are sending a new one, but I picked up another in the mean time and a few hours in it's already doing much better.
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wedding
Emerald
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Post by wedding on May 11, 2024 22:53:41 GMT -6
I ended up contacting Dexcom and we think it was faulty. They are sending a new one, but I picked up another in the mean time and a few hours in it's already doing much better. I’m sorry I just saw this. I’m glad the new one is better. When do you find out if you’re T1? I was diagnosed when I was 23 when I had glucose in my urine at a routine physical. This was 20 years ago and it was so uncommon to have T1’s diagnosed so late in life but all the tests said it was. We traced it back to my getting really sick with mono when I was 18. Autoimmune disorders are such assholes! |
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byjove
Ruby
Posts: 16,747 Likes: 89,352
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Post by byjove on May 12, 2024 6:02:05 GMT -6
I ended up contacting Dexcom and we think it was faulty. They are sending a new one, but I picked up another in the mean time and a few hours in it's already doing much better. I’m sorry I just saw this. I’m glad the new one is better. When do you find out if you’re T1? I was diagnosed when I was 23 when I had glucose in my urine at a routine physical. This was 20 years ago and it was so uncommon to have T1’s diagnosed so late in life but all the tests said it was. We traced it back to my getting really sick with mono when I was 18. Autoimmune disorders are such assholes! Hopefully soon? My PCP said we should have know by 5 PM Friday (she was out Thursday and Friday and then was on call for the weekend, and she very kindly told me to call to discuss the results when her going on call started at 5), but quest says everything is still in process 😭 I have other autoimmune issues and a terrible flare started in November, so I’m wondering if more than my joints were being attacked- my first wonky blood sugar was at the end of November. It actually all started last May when I had strep throat and it brought back my psoriasis (well known connection, and things progressively snowballed last year). I also have eye brow hairs and some eyelashes turning white, which I finally asked the derm about, and she said that wasn’t normal aging and was likely AI. We shall see. |
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brux
Diamond
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Post by brux on May 15, 2024 9:30:49 GMT -6
My MS has caused intermittent painful skin. There's been periods where a particular patch of skin on my torso feels like a chemical burn or sunburn. Clothing irritates it and I'm generally annoyed by it. It's not catastrophic, but it's really distracting.
It usually lasts a few weeks and then goes away. It just started again yesterday on my shoulder blade and I'm grumpy about it.
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byjove
Ruby
Posts: 16,747 Likes: 89,352
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Post by byjove on May 16, 2024 6:48:19 GMT -6
brux , that sounds awful! Sorry to hear you are having to deal with that.
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brux
Diamond
Posts: 35,472 Likes: 283,632
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Post by brux on May 16, 2024 8:20:40 GMT -6
brux , that sounds awful! Sorry to hear you are having to deal with that. thank you. It made it feel slightly better when I whined about it on the internet :-) |
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byjove
Ruby
Posts: 16,747 Likes: 89,352
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Post by byjove on May 16, 2024 8:28:07 GMT -6
brux , that sounds awful! Sorry to hear you are having to deal with that. thank you. It made it feel slightly better when I whined about it on the internet :-) I hear ya on that! |
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byjove
Ruby
Posts: 16,747 Likes: 89,352
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Post by byjove on May 17, 2024 8:00:37 GMT -6
Going crazy waiting for results. *snip she is sending me for imaging on Monday. She is concerned it is a insulinoma.
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brux
Diamond
Posts: 35,472 Likes: 283,632
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Post by brux on May 17, 2024 19:54:05 GMT -6
Going crazy waiting for results. *snip she is sending me for imaging on Monday. She is concerned it is a insulinoma. best wishes for that. But more info is always a good thing! |
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Post by AnnPerkins on May 20, 2024 6:07:17 GMT -6
Hey guys I reschedule my biopsy for the 20th bc I got sick this past week. It was a mild flu. I’m okay now but I couldn’t make it on Monday. Good luck today! |
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Post by miawallace on May 20, 2024 7:00:26 GMT -6
Hey guys I reschedule my biopsy for the 20th bc I got sick this past week. It was a mild flu. I’m okay now but I couldn’t make it on Monday. Good luck today! thank you! I’m a bit nervous 😩 but I got this! |
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byjove
Ruby
Posts: 16,747 Likes: 89,352
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Post by byjove on May 20, 2024 7:05:21 GMT -6
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gimmeaQ
Opal
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Post by gimmeaQ on May 20, 2024 8:08:01 GMT -6
hi - i guess i go here... sharing in case it helps someone i guess? also selfishly hoping it's therapeutic to type out  i've had chronic right upper quadrant pain for more than two years now. i meet all of the "four fs" for gallbladder issues, so at first i did all of the gallbladder tests: ultrasounds, HIDA scans, etc. with no findings. moved to a GI specialist who did an upper endoscopy about a year ago and then finally a colonoscopy earlier this year with no findings. which... yay? but no other explanation for my pain. following my colonoscopy and i guess the "clean out", i have seemingly random pain in other weird areas of my abdomen, like, directly on my sides - not flank pain, but between my armpits and my hip bone. additionally, i alternate between diarrhea and random bouts of constipation. so, GI basically diagnosed me with IBS by process of elimination. i had to switch PCPs recently and i LOOOOOOVE my new primary. she is absolutely wonderful. i went over everything with her and she agreed that it sounds like IBS and asked me if/when i had COVID. sure enough, i went back through my records from my previous dr and i'd had it about a month before this pain started. apparently, there is more and more work being done due to increasing association between a virus like COVID and IBS. as she explained it, a virus like that can trigger all sort of nerve response in your gut as your body fights it off. sometimes it doesn't go back to normal, it just keeps flaring. my insurance company offers a free GI consultation through their virtual care, so i got a second/third opinion and they said the same thing (without me really tee-ing it up). that said, my PCP prescribed me a medicine to try that used to be used for anxiety/depression. i don't know a ton about this, but she indicated that it's outdated and either way she was giving me a very low dose. even still, i was a bit nervous to take it, so i held onto it for a few weeks and started it last night. i was a bit tired waking up this morning, but also monday and children so hard to ID whether the meds had anything to do with it. i'll continue with it for a few weeks and then have a follow up with my PCP to see how it's going. it's been an extremely stressful week at work and that seemed to trigger a "flare" last week, which gave me an added push to try the meds. i'm also meeting with a nutritionist from the same virtual care network as suggested by the NP i did my consult with, so i'm sure i'll get some additional ideas to try there but it's not always easy to make sweeping diet changes, so we'll see. i'm also working on losing weight for this and lots of other reasons, so i'm hopeful that the combination of all of those things makes a difference. thanks for reading. obviously i am happy to answer any questions if anyone is interested. |
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Post by miawallace on May 20, 2024 12:26:10 GMT -6
Biopsy done. The procedure itself was super fast and relatively painless. I’ll know the results in like 7-10 days. They said it’s longer diagnostic bc they are sending it for PBC studies too and I don’t remember what else bc I was high as a kite.
I’m in the recovery room eating gold fishes and a Turkey sandwich. I’ll be out around 1:45.
Thank you guys for your well wishes. It’s the last procedure of all the works my GI ordered. Woot woot.
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Post by musicfrk on May 21, 2024 2:06:33 GMT -6
I go here, I think.
I've been living with CHF for almost 9 years now. Technically was recovered at one point, and due to relocating in February 2020 then all of the rest of the things in 2020, I never got established with a new cardiologist. So, I was without meds for a few years and all was fine. Well, fast forward to probably September 2022 and I was having some symptoms again, mainly shortness of breath and a cough that wouldn't go away. So since we had moved back home, I reached out to the previous cardiology team I had been seeing and they had me start my meds back up. Well, then my cardiologist left, and they couldn't get me in with anyone else there, so I was just taking the meds I had without anyone following anything.
So in the past 1.5 years now, I've developed a DVT clot so I'm now on Xarelto for forever (prior history of bilateral PE, which were found by chance during an ultrasound of my gallbladder); have been to the ER two or three times for fluid overload; and my most recent echo puts my EF at 23%, right where it was at diagnosis in 2015. At this point...I don't know what is next, whether that is an ICD or CRT-D, or we just keep working to titrate my meds. The super fun part is my pulse runs tachy, but my BP runs low. I will take my readings at work and get 75/57 with 106 rhr, for example. So we are still trying to adjust where we can there, while also keeping me from passing out due to BP dropping too low. Every time I visit my PCP he just refers me back to cardiology, and it's driving me up a wall because any cough I get could be fluid overload, or just a cold/allergies, and the only way to know for sure is increasing diuretics to see if it helps any, and that's if I absorb enough of them. My appointment tomorrow I'm going to ask again about switching from furosemide to torsemide specifically due to the bioavailability.
If you made it through all that, I owe you a cookie.
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Post by AnnPerkins on May 21, 2024 13:34:47 GMT -6
Biopsy done. The procedure itself was super fast and relatively painless. I’ll know the results in like 7-10 days. They said it’s longer diagnostic bc they are sending it for PBC studies too and I don’t remember what else bc I was high as a kite. I’m in the recovery room eating gold fishes and a Turkey sandwich. I’ll be out around 1:45. Thank you guys for your well wishes. It’s the last procedure of all the works my GI ordered. Woot woot. WAIT. Did you get actual drugs and not just bullshit local anesthetic? |
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Post by miawallace on May 21, 2024 13:43:05 GMT -6
Biopsy done. The procedure itself was super fast and relatively painless. I’ll know the results in like 7-10 days. They said it’s longer diagnostic bc they are sending it for PBC studies too and I don’t remember what else bc I was high as a kite. I’m in the recovery room eating gold fishes and a Turkey sandwich. I’ll be out around 1:45. Thank you guys for your well wishes. It’s the last procedure of all the works my GI ordered. Woot woot. WAIT. Did you get actual drugs and not just bullshit local anesthetic? Let me check my paperwork. I know the lady mentioned a sedative too. Plus they gave me norco for pain after and I’m a big pussy when it comes to hardcore pain meds. I was throwing up all day. I’m fine today. Just have the radiating pain on my shoulder I’m treating with Tylenol. Anesthesia and the good pain meds always do this to me tho. |
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Post by miawallace on May 21, 2024 14:14:21 GMT -6
Continued.
The docs havent posted on my portal yet.
I know my nurse initially mentioned fentanyl but I’m not sure if they actually gave it to me. Another nurse gave me a sedative first. The main nurse was like I’m going to give you pain meds but your procedure is going to be so fast you probably won’t end up feeling the effects.
Then I was wheeled back to my first spot and told to lay on the side of my liver biopsy so that it adds pressure. I was like that about 1hr. Then I was told I can go on my back. Then I was given norco. And then i got sick.
The nurses released me at 230 and not 145 bc I was throwing up and they wanted to make sure I didn’t need further medical attention. They gave me 2 doses of Zofran and an IV saline treatment to help with my sicks. Fun times.
I was going to come back and give updates but I was feeling so sick. The actual biopsy was pretty fast and smooth and I don’t have pain at the site. But the rest of the stuff sucked.
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byjove
Ruby
Posts: 16,747 Likes: 89,352
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Post by byjove on May 22, 2024 8:09:26 GMT -6
XP Well it’s not diabetes and it’s not a tumor. They have no idea what’s going on. Endocrinologists scheduling out to December currently 🙃 Hopefully it will just go away.
I’m still off the rinvoq for now. Maybe it’s helping a little? Though everyone says the rinvoq shouldn’t be causing any of this. As my husband likes to say, they should use me in clinical trials because I’ll turn up all the weird side effects…
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AmyG
Ruby
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Likes: 34,903
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Post by AmyG on May 22, 2024 17:26:38 GMT -6
I ended up contacting Dexcom and we think it was faulty. They are sending a new one, but I picked up another in the mean time and a few hours in it's already doing much better. dil has the libre and was having tons of false low alarms. She knocked it off and they sent a new one. the new one has been working so much better. So anectdata if they are off, maybe you need a new one. isn't that a very helpful non helpful thing? |
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AmyG
Ruby
Posts: 15,825
Likes: 34,903
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Post by AmyG on May 22, 2024 17:28:32 GMT -6
My MS has caused intermittent painful skin. There's been periods where a particular patch of skin on my torso feels like a chemical burn or sunburn. Clothing irritates it and I'm generally annoyed by it. It's not catastrophic, but it's really distracting. It usually lasts a few weeks and then goes away. It just started again yesterday on my shoulder blade and I'm grumpy about it. shouldn't there be like a numbing type cream that would help with that pain? I'd be sure to ask. sometimes doctors don't offer unless you specifically ask. Or is it nerve pain where a nerve med would help? |
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AmyG
Ruby
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Post by AmyG on May 22, 2024 17:29:49 GMT -6
brux , that sounds awful! Sorry to hear you are having to deal with that. thank you. It made it feel slightly better when I whined about it on the internet :-) I think that's very true that whining to the void is helpful. Sometimes it seems I only complain but really here is where I can get it all out and it helps me to formulate plans for what the f to do next. or if there is nothing to do next but to sit with it. |
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AmyG
Ruby
Posts: 15,825
Likes: 34,903
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Post by AmyG on May 22, 2024 17:30:56 GMT -6
Biopsy done. The procedure itself was super fast and relatively painless. I’ll know the results in like 7-10 days. They said it’s longer diagnostic bc they are sending it for PBC studies too and I don’t remember what else bc I was high as a kite. I’m in the recovery room eating gold fishes and a Turkey sandwich. I’ll be out around 1:45. Thank you guys for your well wishes. It’s the last procedure of all the works my GI ordered. Woot woot. may the next days waiting for results go as fast as you want them to |
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AmyG
Ruby
Posts: 15,825
Likes: 34,903
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Post by AmyG on May 22, 2024 17:35:33 GMT -6
XP Well it’s not diabetes and it’s not a tumor. They have no idea what’s going on. Endocrinologists scheduling out to December currently 🙃 Hopefully it will just go away. I’m still off the rinvoq for now. Maybe it’s helping a little? Though everyone says the rinvoq shouldn’t be causing any of this. As my husband likes to say, they should use me in clinical trials because I’ll turn up all the weird side effects… I hate that there's not an answer for you, but it's really nice it's not a tumor or t1 diabetes. I hear you on the weird side effects. Seems I always get one of the less likely side effects. Take Celebrex if your other pain meds give you reflux, takes celebrex and gets a super upset stomach reflux thing. I can say that kind of thing about most of my meds I take--this is rare side effect, then I get it, even when I am very careful now to be sure to not read the side effects so it's not like my brain playing tricks on me. |
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AmyG
Ruby
Posts: 15,825
Likes: 34,903
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Post by AmyG on May 22, 2024 17:36:08 GMT -6
miawallace, glad you got pretty good drugs and no pain forgot to say that part
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