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dannyg's Achievements


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  1. Anyone go through the same thing? Before last year no issues at all perfectly healthy. December I was getting sick and developed pots. January my bowel movements stopped. Started losing weight suddenly for no reason muscle mass everything. February the protein in my urine started going up it's been at 30 ever since. Still have severe bowel issues constipation, I don't go for days at a time. March I started having infections urinary tract infections and signs of infections. They still continued till this day. June they told me it was kind of diverticulitis and remove the section of my colon. In May I had an MRI that said my gallbladder was full of sludge. The CT scan I had in January and March said my gallbladder was unremarkable. I had my gallbladder removed last week, they did a biopsy on my liver. I have fatty liver and the results came back that my portal vein is inflamed probably from the disease gallbladder. My gallbladder was having gangrene in it that's in the report. One week later I am still very sick with flu-like symptoms, dark cloudy urine. When I get a urine test it shows I have leukocytes, and my blood test show I have an infection somewhere. White blood cell count is slightly elevated and sometimes the MCV and other numbers are off a little. All the doctors do is give me antibiotics for two weeks, and as soon as I'm done and sometimes the infections never go away. I still have the protein in my urine. I have been to a nephrologist he said it's not my kidneys, my GI doctor says it's not my liver, and all I keep being told is that sometimes things happen we can't explain. Before the surgery about a month ago I made an appointment with an autonomic specialist. He told me to come back for testing after I get rid of all of these infections. They are interfering with my autonomic system causing it to be inconsistent. He cannot give me an accurate diagnosis while I have infections causing problems. Has anyone gone through this? Is this pots that's doing all of this causing these infections kidney problems? I have been tested for every hepatitis autoimmune disease, hormone test, and everything comes back good. Nobody can explain why I constantly get these infections or what is causing my body to shut down. Every week it just gets worse. Anybody with pots go through the same thing? I have 11 months of no answers and I can't even find out what kind of pots I have or what because medical conditions keep popping up
  2. I am currently going through the same thing. I have to meet with a surgeon next week about my gallbladder being taken out, and I have been having a constant inflammation in my body. Turns out it's been my liver. All of my liver enzymes are perfect but they found it with a fibroscan test, and a HIDA scan. When she was doing the HIDA scan she said my liver was enlarged. Look deeper into the liver or kidneys could be a possible reason
  3. Exact same issue I'm going through right now. I've been having constant inflammation and infections. I went to a nephrologist. My protein is at 30 and I have very high creatinine at the upper limit. My urine creatinine. He told me my blood creatinine is okay my urine creatinine is very high. He told me I need to see a GI doctor about my liver. He said all the creatinine coming out in my urine means my kidneys are doing their job removing the creatinine. There should not be that much creatinine in the urine, and that comes from the liver. The liver is supposed to keep it in your body. I went to a GI doctor all of my liver enzymes were perfect. Except one that said I might have fatty liver possible Nash. Nash has the chronic inflammation of the liver which would be a chronic condition that could cause pots. And pots symptoms of low blood pressure irregular heart rate circulatory problems. I had a fibroscan done at a hepatologist office. I have over 67% fatty liver, and Nash. Many times if you have a liver problem it affects your kidneys, I kept insisting I had a kidney problem it's coming from the liver. Now I just recently found out my gallbladder is not working at all when I had a HIDA scan test done. So I have some severe medical issues going on that are either making my pots symptoms worse or caused my pots. But if you have a lot of creatinine in your urine and your blood creatinine is okay you need to look into your liver. Your liver could be causing problems with your kidneys.
  4. When I first got pots last year standing my blood pressure would go up it was 160/100. The last four months or so my blood pressure has been staying very low even sitting down like 95 / 70. When I stand up it drops to about 78 / 65. I don't take anything or do anything different I don't know what happened. It just changed on its own all of a sudden. The strange part is when my blood pressure was high like that my pulse would be 150 155. Now my blood pressure is low oh, and my heart rate sometimes will be 120 when I stand up, sometimes it'll only go to 105. Very strange.
  5. Thank you everyone. I keep telling this friend of mine that that's not the problem. It's well within range the doctor didn't say anything. My blood pressure has been very low in the morning lately. I just checked it now it was 69/56 standing and walking for 5 minutes. Highest it will go up to its about 95/70 later. I know I need to deal with the autonomic issue and go see an autonomic specialist, but I'm having some other health issues going on that might be aggravating the situation. They are kind of monitoring me right now. Protein in my urine has been at 30 since February, and I beginning a lot of urinary tract infections and having high white blood cell count since end of April. When I don't have an infection and I feel okay my blood pressure does not go that low.
  6. I had my Cortisol levels checked. Wondering if the AM seems a little on the low side. I feel horible all day and it's within range but a friend of mine says it's too low on the low side that's why I'm so weak and fatigued in the morning. Do my AM number seem a little bit too low and could this be why I feel so weak in the morning ? It's 9.3 I don't know if that's a little bit to low if it would make a difference what do you think? My AM Cortisol. 9.3. Range. 6.0 to 18.4 My PM Cortisol. 4.9. Range 2.7 to 10.5
  7. This is me. I get lightheaded but havent passed out or had other symptoms. I was at a new doctor last week, my pulse was 82 / 62, the nurse in the doctor's office told me I should go to the emergency room right now. I told her I ain't going nowhere it gets worse than that. I told her check again in 10 minutes It'll be different. She did and it was 115 over 80.
  8. I had a Colonoscopy, endoscope, 3 Cystoscopys, this year, and Just had part of my colon removed and resectioned, growth from my bladder removed, umbilical hernia repair, appendix removed, on June 27th. 1st time sedated for the Colonoscopy with POTS I was worried. I thought my heart was going to stop when they put me to sleep. I've had several General anesthetics all of the surgeries, and made it through just fine.
  9. I had an MRI a couple weeks ago, and it said I had gallbladder sludge. But the doctors never said anything about it or mentioned it. They removed about 8 inches of my sigmoid colon that's above my bladder. The last two days I've been in pain before I go to the bathroom probably cuz it's healing. No diarrhea I haven't had diarrhea in months. All constipation all the time as what the problem has been. He said he removed all the bad part of my colon that was chronically inflamed. And yes for the last seven months my body has chronically been trying to fight something off. I don't know if it was the growth on the bladder, or my colon. I stopped using the bathroom back in January and the growth on my bladder was found at that time. So I'm not sure what happened or caused all of this. I guess all I can do is wait a couple weeks see how this all heals up, and do like the surgeon said find a GI doctor to do all this testing and get blood work done to see if anything else is going on. He said maybe with this removed from the bladder and the intestine, my body might start to come back to normal a little bit.
  10. I will try to keep this short as possible. November I was getting dizzy, light headed, heart racing and I was diagnosed with pots. Could not understand how I got it when I was perfectly healthy. Beginning of January I stopped having bowel movements, I lost 60 lb of weight for no reason, and went for a CT scan to see if there was any blockage, and they found a growth on my bladder. Since then I forgot about the pots, because I figured the growth on my bladder was cancer and these were the symptoms of cancer. Loss of weight for no reason, weak immune system, etc. Then I had diverticulitis in March that would not clear up, and they removed a growth on my bladder with surgery. They found no cancer. As time went by I got worse. Now I look like skin and bones always dehydrated. I lost all my muscle mass, constant infections I can't fight off, still have bowel issues, not absorbing food, very fatigued, feel okay for a little while then get totally exhausted, feel like I'm running a temperature but I'm not, and my white blood cell count is always high about 11. I have been to three hospitals, 13 doctors, all my biopsies came back saying no cancer, and the doctors don't know what's going on with this. I know eventually I have to see somebody that specializes in this, but I was wondering the symptoms I named, are they all part of pots? I had three cardiologist and all my doctors tell me there's something else going on, and they are all separate issues. My cardiologist was telling me I have cancer it's symptoms of cancer and I have POTS. My body looks and feels like I have cancer. Are those all pots symptoms? Sudden loss of weight? Not absorbing food? Feeling like you're running a temperature when you're not? Weak immune system that can't fight off any infection? Constantly getting infections? Urine protein at 30? I thought for sure that I had cancer, and it caused my pots, but now I'm more confused than ever. Just wondering if anybody else has all these symptoms I have. Thank you
  11. Thank you Pistol, I have a lot of hope it will get better. I never had trouble with my bowels until 2015. I had diverticulitis. I didn't know it , I just stopped using the bathroom. I had a colonoscopy they said had diverticulitis they cleared it up and from 2015 until November oh, my stool was always flat. I told my GI doctor about it he said it's okay so I never worried about it. Then then I stopped having bowel movements this year again, they did say I had blood in my stool, did a colonoscopy but didn't find anything wrong. Then they found a growth on the bladder. I'm blaming the bladder for the whole thing one might have been my intestine all along. They say 80% of your immune system and everything is your intestines and your bowels. It probably was a combination of both for me and his bladder got more infected as time went on. I did notice I went through all my medical records a few months ago, and my white blood count was always at 11 for 2 years. It's still considered normal but it's the high end of normal being at 11. In November when I went to the doctor for my checkup I told him I had tenderness they gave me antibiotics to take and I noticed my white blood count was at 16. But I never was sick or ran a temperature. So you are correct for at least two years my body has been trying to fight something off. Probably both the bladder and my restricted sigmoid colon. My GI doctor told me don't worry about flat stool it's okay yeah, but it might have been a problem all along that I never knew about.
  12. That is my hope to. That now that this is gone from my bladder, things will start to improve for me. The surgeon even said the same thing. He said to give it a month or two, and maybe things will improve for me. My urologist isn't saying much about it I haven't seen him really. He assisted with the surgery. But my surgeon did say the thing they remove for my bladder was like Jell-O, like a bunch of strange cells.
  13. It has been a long time since I posted in the group. I thought I would update everybody. A lot has happened since February. I have been to 13 doctors, three hospitals, two CT scans, on MRI, and many blood and urine test. Things have gotten worse since this all started. It took all this time but I finally had surgery. They removed 8 inches of my sigmoid colon, my appendix, and a growth from my bladder. I just had this done last week. All came back benign no cancer. I have a catheter now I have to have till next week. The growth that was on my bladder was a growth of abnormal cells. Not cancer just infected bad cells. I have begged doctors all this time to remove that from my bladder. They kept insisting it's just a cyst. And it's not doing anything. I have lost all this weight, my immune system is shot, circulatory system, and I feel much worse with the pots. Maybe in time it will improve I'm not sure. 2 months ago I started having urinary tract infections, that I could not get rid of. Then that thing on my bladder made a hole in my bladder. He fix that and sealed it up and I have to see this week with a test that everything is working and get the catheter removed. Since the surgery my pulse has been higher with the pots. I still insist this growth on the bladder messed up my whole system and cause my pots. They are telling me no it's not related. If I get better and recover from the surgery, then I will start to look into the rest of this pots issue. I look very weak, lost all my muscle mass, and then very thin skin and bones. I am grateful, and everyone is very happy for me that it turned out that don't have cancer. With my pots getting worse, body not absorbing food, and being very weak all the time, and mostly homebound unless I go to doctors, I'm taking day by day and doing what I can. I had diverticulitis that will not go away, I have malabsorption, and infection after infection. I hope soon as I recover from surgery, things will improve for me. I'm not expecting to be 100%, but I would like to be able to get around again somehow. Thank you everyone for all your help, looking forward to catching up on the comments and help I could get dealing with the pots.
  14. Thank you everyone ... Very frustrating for me. Have to wait for the biopsy thursday coming up, them maybe a week from then get some answers. I think I know the answer already though since it has to be the cause of all my other issues like the bowel problem and now Appendix issue popped up. I don't have an oncologist yet since they officially havent done a biopsy yet. That will be next thursday. My urologist last time I saw him a week ago when he told me about this biopsy and scheduled it he said "we still have time because it dont look like it spread because it isnt showing up in my blood or urine". That makes no sense. I dont think its a coincidence that 2 months ago a was in great health, then they found the bladder problem, then the next week its my kidneys not working right, then my bowels, then my Appendix. 4 doctors saying each one has nothing to do with the other.... It has to be. Common sense. All I can do is hang in until next week and see what happens. Im wiating for the official biopsy from my Colonoscopy. I did get an Email with tbe doctors report. He took 3 biopsys of Polyps. 1 said "high grade dyslasia". I looked it up. Dont sound good. By the time they sample my bladder and tell me thats the problem, I think it will be way to late.. I will keep everyone posted...
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