We Truly Have No Answers | CT Angiogram Reaction & March Health Update

Рет қаралды 339

Күн бұрын

#chronicillness #chronicpain #stomachpain
March 16, 2023 & March 22, 2023 - We got my CT angiogram done on March 16th to check for vascular compression syndromes and Mesenteric Ischemia. My chronic upper abdominal pain was what necessitated the test. We intended to make a vlog about it, but the test went so quickly, and we were so stressed about the results, and it didn't turn into a full vlog. This video is much more about how I have been feeling throughout the month of March given that the tests we have done have only solidified the fact that we truly have no idea what is going on with my health. Although I am extremely relieved the CT angiogram was negative, preparing for that test made me realize how much I deeply want to know the root cause of all my symptoms. We do not know why I am so sick. We do not know if or when my condition will progress. We do not know what to do to help me get better. The medications help to an extent, but not nearly enough. I am still declining and we do not know why. The only "answer" we have is that my intestines are slow. We have never confirmed gastroparesis. My endoscopy was clean. My SIBO test was negative. We have nothing solid to blame my ever worsening and debilitating abdominal pain on. There is nothing I can do but wait to see a new doctor at the end of April. This video is me getting all this heaviness off my chest, honestly. I am so scared and in so much pain. I'm so frustrated that begging for help from doctors is all I can do. My current gastroenterologist is truly out of ideas, so my hope now is that my new gastroenterologist can think outside the box and get to the root cause of my health decline that has been ramping up since 2018 or perhaps even before then. If you are watching this as someone who is still a medical mystery, I hope this video at least helps you feel less alone. Let me know in the comments if you would like to see more videos where I just talk about what's on my mind.
Chapters:
0:00 - CT Angiogram Test
01:31 - CT Angiogram Results
02:51 - MALS
04:01 - Linzess Update
5:55 - Desipramine Update
6:53 - Abdominal Pain Update
12:00 - Weight Loss
12:30 - Thoughts on my Doctor
13:00 - Bloodwork
14:22 - Chart Notes
15:15 - Self-Advocacy Struggles
16:15 - Medical Mystery
20:20 - It's Not SIBO
21:00 - We Need a Root Cause
22:20 - New Level of Pain
Videos About My Previous Gastroenterology Appointments;
1. Appointment 1: "My Broken Tummy: Scheduling 5 GI Tests in 2 Months | My GI Journey": • Video
2. Appointment 2: "SIBO and Slow Motility: The Diagnosis + Second GI Appointment | My GI Journey": • Video
3. Appointment 3: "We Maxed Out My Dose of Linzess Only One Month into Treatment": • We Maxed Out My Dose o...
4. Appointments 4 & 5: "Watch my Gastroenterology Visit! Trying Psych Meds for Stomach Pain & Buspar for Anxiety": • Video
5. Appointment 6: "March GI Visit: Testing for Mesenteric Ischemia? Plans for CT Angiogram & Medication Increases": • Video
Timeline Videos:
1. "My GI Health Timeline: From Anorexia to Veganism to Gastroparesis": • My GI Health Timeline:...
2. "My 2022 GI Journey Recap and Health Update | 28 Videos in 34 Minutes!": • My 2022 GI Journey Rec...
3. "My Severe Pain Attacks Became Chronic Pain! | GI Timeline Redux": • My Severe Pain Attacks...
4. "Calorie Data Proves My Illness Progressed | Monthly Diet Analysis | Weight Gain & Loss in 2022": • Video

Пікірлер: 36

@Robynvlogs1 Жыл бұрын

I remember I used to get the most intense pain during my period where I’d be rolling on the floor in agony & pass out of the sofa it’s like your mind can’t focus on anything else, thankfully my body doesn’t give me that intensity anymore but I so get you about the tolerance increasing! I’d like to see what I eat video vlog, you’re so good at those!

@linneanelsonvlogs Жыл бұрын

Thanks! I'm planning to make more what I eat in a week content during the next month or so. I'm going to film what I eat all week next week :) I am glad that you don't get that level of pain with your period anymore. That sounds so awful. The strangest thing is that my symptoms almost always get better around my period, both before it comes and during my period. I don't understand why, but if I have a bunch of really good days with eating and symptoms, it always means my period is coming.

@AprilLeighchronicallyme Жыл бұрын

I know more than anyone how much of a pain it is to be given advice by other people but girl I feel Like you are literally describing my entire health Journey! My gastroparesis went into remission and being diagnosed with extreme functional dyspepsia and taking amitriptyline for it changed my life!! Mayo Clinic Is the one that helped me and by Studying all of my documents, and online video appointment . Covered by insurance. My local dr over seeing my care but I’ve been eating since thanksgiving after puking non stop nausea and dizziness and starving for over 7 months and crippling gut pain. They told me that it the next Gastro paresis so when the treatment for that stops working to treat for functional dyspepsia and if you get relief, that’s how you get your diagnosis. I’m praying for you and pray you are close to Turing a corner! Right when I thought I was most likely going to die from Lack of nutrition I was diagnosed with some thing I have never even heard of an within five days of taking the medicine I was back to eating, like nothing even ever happened! I know we are all very different and how we respond to food and medicine but I just have to share with you just in case it would help you . I can’t wait for you to get better. I’m cheering you on❤

@kiki-oh7hi Жыл бұрын

I'm familiar with that med as a tricyclic antidepressant but never heard of it for the gut. I am so happy you found something that works for you!

@AprilLeighchronicallyme Жыл бұрын

@@kiki-oh7hi me either but at 10mg a day it helps the nerves to the gut , nausea and vomiting!

@linneanelsonvlogs Жыл бұрын

I appreciate your advice! It's totally different coming from people who are experiencing the exact same thing and have been through the same journey like you have. I am so glad the amitriptyline changed your life for the better! I love knowing that you are able to eat now and that you are doing so much better :) Thank you so much for sharing your story and experience with me. It does really help to know that there is hope we will find the right medicine and the right diagnosis someday. A lot of the time, it is so hard for me to imagine things getting better, but reading this comment certainly reminded me to never lose hope. I have heard really great things about the Mayo Clinic, and Robert is interested in seeing if I can get a referral or something to be seen there. I also have a lot of hope for the new gastroenterologist that I will get to see at the end of April because he is a small bowel and endoscopy procedure specialist. If he doesn't have any new ideas though, I will certainly have to expand my search for a doctor who can help me get to the bottom of my symptoms to outside our area. Thank you so much for your encouragement and for cheering me on. I do agree with you that tricyclic antidepressants can be really helpful, and I am curious about trying amitriptyline myself. Desipramine is a tricyclic antidepressant and it certainly has helped lessen my nausea and vomiting, so I am quite pleased with that. I will have been on it for about 3 three months when I see the new gastroenterologist, so I think that will be enough time to know if the Desipramine is the right tricyclic antidepressant or if we should try a different one. I am certainly going to ask about amitriptyline because I am so interested if it will help me too. I hope all is still going well with your recovery from the antibiotic :)

@AprilLeighchronicallyme Жыл бұрын

@@linneanelsonvlogs omg yes finally after my 10 day reset that I did helped jump start and eating lots Greek yogurt in addition to my probiotics doing great now. I know you will get better with your gut. You are kicking butt at getting things checked off the list . That’s how they knew what I had by finding out what I didn’t.

@linneanelsonvlogs Жыл бұрын

Yay for the reset helping! I'm glad you are doing great :) Thank you :) It is hard to feel like I am kicking butt, but when I think about it in a more positive light, it is really good that we are eliminating possible diagnosis options through these tests. Hopefully we will find out what I have soon!

@kiki-oh7hi Жыл бұрын

Thanks for the update. So glad you got a new MD! Push for more tests! I have my MRI review Monday and just got scheduled for endoscopy and colonoscopy early April. I am so sorry about your pain and worried about your electrolytes. Even a PCP should do an annual physical and require bloodwork.

@linneanelsonvlogs Жыл бұрын

I am so excited for the new doctor. Robert researched his work and he studies upper GI issues extensively. He has published a lot of papers on his specialized upper GI procedures. I believe his is a small bowel specialist. Knowing that about him gives me a lot of hope he will be able to help us find the root cause of my motility issues or at the least the cause of my pain and other ongoing issues. I hope your MRI review goes well. Please do let me know how it goes! Wishing you luck with the endoscopy and colonoscopy too. I am also worried about my electrolytes. I am still having a lot of issues with dizziness, lightheadedness, and falling over when getting up from seated. I will certainly insist on bloodwork from the new doctor. I'm so thankful that appointment is only 5 weeks away now!

@kiki-oh7hi Жыл бұрын

@@linneanelsonvlogs amazing! Also I always ask to be a on a wait list for MD cancellations which is how I'm getting in Monday as opposed to mid April! Wishing you some relief with the pain. Your new MD sounds truly tailor made for you. Fingers crossed and I'll let you know about the MRI- somehow I think it'll be "normal" 🤦🏼‍♀️

@linneanelsonvlogs Жыл бұрын

Being on the waitlist is such a good idea! I wish it was something that Duke offered. I will look forward to the update about your MRI. Thank you so much for the well wishes with my pain. This new MD does sound really awesome, so crossing my fingers he really is!

@affordableaquariumservices1663 Жыл бұрын

I’ve been following your channel in your journey. Thanks for sharing suffering with sibo for six years. Sometimes it’s good to just take a break going through all these tests over the last six years all the anxiety that comes with it I feel a little bit better just stop everything and just go to the gym even though I struggle through my workouts. If I sit at home and think about all my symptoms, it can drive you insane. I became a hypochondriac at one point sometimes it’s good to take a break going down that rabbit hole. This test will never end. All I know is your boyfriend or is that your husband is a superhero

@linneanelsonvlogs Жыл бұрын

I agree that it is good to take a break and get my mind off my symptoms. My husband is really great, and certainly a superhero in my eyes. He encourages me to not be limited by my symptoms and to get out of the house and have fun with family and friends as often as I can. My work also helps as when I am at work, I am focused on that instead of how I feel. My mental health certainly suffers if I only focus on the negatives with my health. There are a lot of positives in my life such as my loving family and friends so I have been trying to focus on the positives as much as I can. I hope you have a good weekend and are able to get your mind off your symptoms too :)

@affordableaquariumservices1663 Жыл бұрын

@@linneanelsonvlogs I took triosmart breath test last month and it came out negative for sibo so my dr. Wrote me off as being crazy. But my symptoms of bloating still there. So I went to a new dr. Had my test done in hospital came back positive for hydrogen and methane. So these tests not accurate. I’ve been down the rabbit hole $100k 6 year journey. Tried everything. Most important thing like I said take a break. Not taking the antibiotics this time

@affordableaquariumservices1663 Жыл бұрын

@@linneanelsonvlogs I’m driving my gf crazy with this. Lost my bodybuilding career etc. I hope you find your answer or solution.

@linneanelsonvlogs Жыл бұрын

I hope you find your answer or solution too.

@affordableaquariumservices1663 Жыл бұрын

@@linneanelsonvlogs dr said only solution to cure sibo is fmt. But it’s in Canada uuuugh

@alison2288 Жыл бұрын

I’m so sorry; I understand what you are dealing with. The other commenter has a great idea about the motility marker study. You need to get yourself to a motility specialist. I know you stated once that you did this and they didn’t see you because they would be doing the same “treatment” (sorry, I almost laugh at that because you aren’t getting good treatment) but getRobert to get you an appointment at a motility center. It sucks that we need to fight for what we get. If I were you, I even might go to an urgent care and ask for blood work for malnutrition markers. Get that into your record. From other posts, I’d say you and I are the same height (5’6”) so just note that I’m 84 and my “blood test” look fine which is both good and bad because it makes the docs think all is OK when I feel like crap. So it isn’t the be all and end all. It it is a start. Id also ask for a repeat GST. If it is positive, the insurance would have to let you get Motegrity. Get Robert to push for that as, and this is my opinion, you need an advocate as you are just feeling too ill to be an effective advocate for yourself. I’m concerned particularly because you seem depressed (I’m not a psychologist and I don’t mean to offend) which is totally understandable because not being able to eat, and becoming chronically malnourished will,do that to you. I have a coup,e of ideas but I need to look up some stuff to be accurate, so I’ll comment again in a bit. You’re in my prayers. Like the other poster said, you are speaking for a lot of us and we need to “be there” for each other.

@linneanelsonvlogs Жыл бұрын

Alison, you truly do get it. I wish neither of us had to go through this, but I do appreciate feeling less alone with this through being able to talk to you and others who are also dealing with this. I would love to get a motility marker study. Or a smart pill test. I think getting a true motility test rather than assuming things from X-Rays would be extraordinarily helpful towards understanding what is truly going on with my GI system. I agree with you about the motility specialist. I do remember reaching out to that one doctor and she did refuse to see me. Part of her refusal was that she wouldn't be able to do anything other than prescribe me Linzess and the other part had to do with policy because she works through UNC and not Duke. UNC has this really weird policy with their gastroenterologists that if you see one person one time you are not allowed to work with any other doctor there. The first (not that great) gastroenterologist I saw was through UNC back in 2021, so if I ever wanted to get treatment at UNC, it could only be with that one doctor. I do think we are similar in height. It makes me sad that doctors are valuing your blood test results over the way you feel and your very low weight. I was around that weight when my ED was bad, and I remember feeling so out of it all the time, so weak, it was really tough. I am really scared of weight loss because being close to the weights i was in high school reminds me of really bad times, both mentally and physically. I do need to push for the repeat gastric emptying scan. I plan to ask the new doctor about that and Robert will be with me at that appointment if I am not feeling up to asking for it myself. If the GST is positive, it could certainly open more medication options. As far as my mental health, there are days where I feel quite sad, but on those days, Robert and my family really help cheer me up and help me get my mind off the health concerns as much as they can. Robert and I have been getting out of the house more on weekends, even if just to play board games with my parents or to go on walks outside. We went on a couple walks today and celebrated 3 years since we met :) I had struggled with Depression really intensely in the past, especially when I had my eating disorder, but it actually got the worst when I was in college, which is part of a whole other story I haven't really gotten into on the channel. But, right now, even though I do get down about certain things, overall I don't feel depressed. I do really appreciate your concern though. If I do start to get depressed, I would certainly tell Robert and reach out for help in that.

@Robynvlogs1 Жыл бұрын

The camera quality is so good in this video 😍 did you get a new camera?

@linneanelsonvlogs Жыл бұрын

Yes, I did. Robert got me a new camera for a birthday/anniversiary/Valentine's gift. He went with the ZV-E10 from Sony and purchased the Sony G Series 18 - 105 mm f4.0 lens for telephoto and the Viltrox 13 mm f1.4 lens for selfie cam shots. Ironically, the Viltrox 13 was a little tight in terms of the frame size and a little too heavy for me, so he ended up buying the Sony 11 mm f1.8 lens for even wider angle shots. I'm not sure if he's planning on keeping the Viltrox lens since it is kind of redundant with the Sony. However, the Viltrox 13 mm lens takes way better pictures and has better low light performance. The Sony is just easier on my arms and better in terms of field of view. In terms of microphones, he managed to find someone reselling their ECM-B1M. Sony's cameras have a special microphone connector that makes it super easy to run their microphones off the camera's internal battery (rather than having to charge the microphone), and the microphone has great directional audio and noise cancellation. It's definitely a major improvement over the old Canon G7X I had during my college years and over our iPhone and Pixel vlogging.

@hurricane_valence Жыл бұрын

My gi didn't do blood work either, tho I get content blood work at the hospital that's not gi, the hospital is doing at sitzts transit test right now and I hate it I can't take any motility meds and laxatives for and it sucks pooping sucks right now, finally getting my endoscopy tests with biopsies on the 3 but right I just wanna poop and eat like a normal person cus of my gastroparesis and ive gotten done to 90 ibs now, life sucks ass most times, girl and hope the best for you, I really hope u find exactly what you want and what your body needs

@linneanelsonvlogs Жыл бұрын

I hope you can get some good answers from the sitzts transit test. I know it must feel awful not to be able to take any motility meds or laxatives during it. When I don't take motility interventions, I feel awful too. I totally get the feeling of just wanting to poop and to be able to eat like a normal person. I hope that you can get some good information from the endoscopy, biopsies, and the sitzts transit test. I am so sorry that life is so hard right now. I hope the best for you too, and I also hope that you find what your body needs. I wish that neither of us had to go through this. Not having a gastrointestinal system that functions how it should is so awful. Sending lots of positive thoughts your way.

@kiki-oh7hi Жыл бұрын

ps Tests being negative is a total double-edged sword. Like, yes I'm happy it's negative BUT this also means that I have no idea why I am experiencing this!

@linneanelsonvlogs Жыл бұрын

Negative tests really are a double-edged sword. When we initially got the results, I cried, which sounds crazy because I was also terrified of having a vascular compression or ischemia. It took a few days for the relief of the negative test to sink in and then on top of that my frustration with not knowing the cause of any of my symptoms sunk in as well. Making this video really did help though. Sharing my feelings always helps me process them.

@alison2288 Жыл бұрын

I think that a small bowel follow through might be something that could shed light. Have they reviewed your gall. Bladder with a HIDA study? And, might be a bit far-fetched, but based on something I saw you do in this video, maybe you could check out possibly having hyper mobile Ehlers Danlos Syndrome. That could give a root cause of a lot of your symptoms is you had that. Just some thoughts.

@linneanelsonvlogs Жыл бұрын

Thanks, Alison. I agree with you about the small bowel follow through. The new gastroenterologist that I will get to see at the end of April is a small bowel & endoscopy procedure specialist, so I have a lot of hope that he will be able to do some tests that my current (soon to be past) gastroenterologist has not suggested or been willing to do. As far as hypermobile Ehlers Danlos Syndrome, I have thought about it since I am hypermobile and have very stretchy, soft skin. My entire family is quite hypermobile, so I never thought anything of it until I heard of hEDS through researching my motility issues. The main reason I am not inclined to look into hEDS at this time is my lack of joint pain. Despite being hypermobile and having stretchy skin, I do not have any chronic joint pain. I have some joints that are "problem areas" in terms of not being able to handle a lot of force on them. For example, I can't run much because my knees will hurt and I can't lift weights over my head because my shoulders will hurt, but none of my joints hurt on a chronic basis. All of my pain is in my gastrointestinal system. I know that one of the criteria for a hypermobile EDS diagnosis is joint point for a certain number of months, so I likely won't look into that for the time being. I do agree though that hEDS could be a root cause of my symptoms, if it turns out that I have it. It is certainly in my mind for something I would look into if my joints got worse and started having regular pain or dislocations. I think it is possible that I could have some form of it that manifests more strongly in my gastrointestinal system, but I think it is too soon to tell given that my joints are not causing me significant issues presently in terms of pain.

@alison2288 Жыл бұрын

Not sure you really need chronic joint pain, necessarily, to be diagnosed with hEDS. I know that you have researched everything to the nth degree, which is quite commendable. But I wouldn’t discount it. Have you done the Beighton Test? That may not be how you spell it. Im going to mention this to my GI as well. I have TMJ issues but I don’t have a lot of joint pain. I don’t know, it’s just that it can’t do any harm in being looked into, right? Im butting in here, I cannot help it. My eldest is probably 2 years younger than you are and my maternal instincts are coming through. Just think about it. Are you going to try the Magic Cups? I know that they are a little expensive, but it is much easier getting 4 ounces of pudding down than 8 ounces of a protein shake. Wishing you well.

@linneanelsonvlogs Жыл бұрын

I have done the Beighton Test. I do qualify for hEDS from a mobility standpoint. It's more so the other qualifiers where I worry I wouldn't quite qualify. You are correct that it is worth thinking about. Robert is interested in me getting evaluated for hEDS, but I am hesitant to look into it because getting that diagnosis would scare me and I am worried that it would distract from figuring out my gastrointestinal issues. Although it could also explain them if I had it. I know my reasoning here doesn't make the most sense, but it scares me the thought that there could be something else big going on. Especially something like hEDS where it manifests so differently in everyone so you have no idea what could be coming for you in terms of co-morbidities. It also scares me to think of because I have three younger sisters and I would hate for any of them to get sick if more than one of us had it. My mind really goes in circles about the hEDS thing. About your TMJ - we really are so similar! I have never been diagnosed with TMJ, but my jaw is one of my "problem joints" I would say. When I yaw or even open my mouth wide, my jaw extends beyond where it should. It's always been this way, so it's never bothered me. Lately though there have been times where it's more difficult to get it back in place or where it hurts a little bit. Still not something I'm super worried about at all, but just so interesting we both have weird things with our jaws going on. I looked up the Magic Cups, but I haven't ordered any yet. I have quite a stockpile of the protein shakes that I am currently working through. I do see how they could be an easier way to get more calories in though, so certainly worth considering for the future. I would be quite interested to hear what your GI thinks about the hEDS thing. Robert really wants me to ask the new gastroenterologist about hEDS in April.

@linneanelsonvlogs Жыл бұрын

Wishing you well too :)

@angelam2096 Жыл бұрын

I have the exact same problems. Crazy slow motility. Can’t digest solids well. I recently started mestinon and it is helping. I have been down every rabbit hole on what could’ve caused this. Do you have Ehlers Danlos? Apparently there’s a connection between EDS and dysautonomia causing dysmotility. The other possibility is that it’s an autoimmune attack on our motility system (autoimmune gastrointestinal dysmotility)

@linneanelsonvlogs Жыл бұрын

Hi Angela, I'm glad the mestinon is helping! I found out in the last couple weeks that Elhers Danlos Syndrome runs in my family. The news honestly rocked me emotionally. I have known for a while that I almost meet all the criteria, but I was missing that piece, so I kept telling myself I didn't have it. I went back over the criteria this weekend and it seems super likely I have it as some things have changed with my joints & skin even since I first looked into the criteria over 6 months ago. Now that I know about the family history, I feel confident to ask for a genetics referral at my next gastroenterology appointment. My skin is so sketchy that I think if I just stretched it in front of the doctor he would be convinced to give me a referral lol.

@angelam2096 Жыл бұрын

@@linneanelsonvlogs I believe a rheumatologist can diagnose it. Still not 1000% on the connection btw EDS and dysmotility, other than the fact that they exist together. I haven’t followed your entire story from the start, did something trigger your dysmotility or did it slowly come on in adulthood? Mine came on during pregnancy 5 years ago and has never gone away. Do you have a blog or social media account to follow?

@linneanelsonvlogs Жыл бұрын

You are welcome to follow me on Instagram. My handle is @linnea.e.nelson. I mostly post in my stories to share updates about my day-to-day experience. My most thorough updates are always posted on here. My dysmotility did develop slowly overtime, although I have always had a tendency towards constipation. I started talking to doctors about my gastrointestinal symptoms in 2018. I made a full video on the timeline (since childhood through the end of 2021) which will have a lot more information if you want to know more details. This is the video: "My GI Health Timeline: From Anorexia to Veganism to Gastroparesis" kzfaq.info/get/bejne/fN1kqrxmra28kWg.html. There are a few other timeline videos on my channel as well, but that one spans the longest amount of time.