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dannyg

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Everything posted by dannyg

  1. Long story, and I can't believe it myself. I'm 54 , went to the doctor every 6 months. Kept records and a diary. Back in November 2017 went for my checkup. Told the doctor I had a tenderness sometimes below my belly button. He gave me an Antibiotic to take and told me it's probably a bladder infection. May 2017, same thing, gave me an Antibiotic. November 2018, same thing, gave me an Antibiotic. It came and went, never big pain or anything, just felt a little tender once in a while. November 2018 .......... After taking the Antibiotic, a week later I was getting ringing ears, and light headed. Went to the doctor, he sent me to an ENT. ENT sent me for Vesitbular Theropy. She told me I don't have Vertigo, I have a medical condition causing the problem. Dec. 3rd I had a "seizure" and felt like I was dying. Went to the ER, they did an Echo test, blood work, everything excpet a mid section CT Scan. Everything came back good. December 2018 ........ Mid december went to the hospital again for 3 days. Had another seizure went to a Different hospital. They did a Nuclear Stress Test and found nothing wrong. Told me to see a Nurologist. Blood work, urine test, all came back perfect. January 2019....... New Years eve back in the ER with an attack. 4 days in, they did nothing. Laid there. I found out I had POTS right before I went because Pulse was shooting up to 140 when I checked it at home. After all this time, I stood up at home, and found out I had POTS. All the trips to the ER, and stays in hospital, nobody ever checked my stats standing up ! I did at home and found it. The 4 days I was in, right before my PCP and Cardio doc let me out I told them I stopped using the bathroom number 2. They just left and didn't say a word. My PCP did tell me to not move around to much in the room because when my pulse goes to 120 it sets off the alarm and the nurses get upset. About January 6th I found a new PCP. Told him about the bathroom issue. He sends me for a mid section CT scan and a blood and urine test. I did it in the ER. They "cleaned me out" and I had yellow diarhia. All yellow. The ER doc comes back in and tells me "see a urologist ASAP and a GI doctor right away". He said I have a Cyst thats pretty big on my bladder on the top outside front. The ER did blood and urine work and mine were always perfect. This time, in 1 week, my Protein in my urine went from trace to 5. I went to the urologist and GI doctor. Urologist had me get clearance for Surgery from the Cardio doctor because of my POTS. Urologist said "it's a har mass on my bladder, not a cyst". I go to the Cardio doctor, get the ok. Went to the GI doctor, he said I have blood in my stool and sends me for a Colonoscopy. He sends me for blood and urine work, now my Protein in my urine is 10. 7 days, from 5 to 10. A few days later I called the GI doc cause Im still not using the bathroom. He sends me to the ER. I go, they took urine and blood, and basically told me they can't do anything. The ER doc wanted me to get a CT scan. I told her I just had one last week. She said she would go look at the Scan and tests and come back. While I'm waiting, I asked the nurse about my urine test. She say's my Protein is now 20. That's the star of Kidney failure. I know that, she didnt have to tell me. ER doctor comes back in and asks me right away .. "who is your oncologist". I told her I don't have one. She said to see my PCP right away. She checked my rear end and a few things and said "it didn't spread to your spine so that's good news". Heck, I knew right away when the last ER doc said about my bladder it wasnt good. I go back to the Urologist with the ok for a biopsy. A Cystoctopy. He dont want to do it with me awake with POTS, and I dont want to be awake, so I'm going on Feb.24th to get knocked out to get it done. He said it's a growth on the inside, didn't say how big and I forgot to ask, and a cyst on the outside. The cyst is easy to fix. If it's not cancer i the bladder. I go get the Colonoscopy, he removed 3 polyps, sent them in for testing, and told me my "Apendix is Enlarged" and he didn't find any blockage or reason Im not using the bathroom. He told me to call his office, see him in 4 to 6 weeks, and he will set it up to do a scope from my throat to see what's going on. Now remember, I haven't used the bathroom since January 2nd. I eat a little, take a Laxative to go a few hours later. Then it's diarhia, and not much. Sometimes brown, sometimes green. Everyday since January 2nd, and see him in 4 to 6 weeks and I'm not using the bathroom ? 4 to 6 weeks then schedule a test ? Last 3 days, since Jan 14th I'm getting more light headed, can't eat cause I get blown up fast, Laxative ain't working anymore, and I'm trying to explain to family and people It's the bladder and probably cancer causing all of this. Since 2017 until now with my bladder. The Urologist even said "it's been there on my bladder for quite a while". So, here is where I'm at so far ........ Since November, I lost 65 lbs., havent had a bowel movement really since Jan. 2nd, Pee is not much and very cloudy dark yellow 80% of the time, Protein went from 0 to 20 in 3 weeks because Kidney's ain't working right, I have to have a scope to see if he can figure out my Intestines are failing which I already know, my Apedix has to come out now, I can't eat or drink much because I get blown up and will end up in the ER, and all my doctors still do not agree the bladder has anything to do with all these other problems. Why ? Because it's about the money. By the time next week comes for the Cystoscopy, then a week to get the results, it will be to late. Look all that happened in 3 months. Then maybe 6 weeks to do a scope and that won't show my Intestine is failing. Freinds and Family's thoughts on this.... A lot of help. They are busy, work, and live far away. I have POTS and can't drive anymore. I can't walk 50 feet before I want to fall, I get a ride from my 78 year old neighbor about 20 times now. He is old and can't keep doing it. I'm not rich and can't afford to pay UBER or someone $50 a ride to go to the doctors and maybe eventually all these surgerys, and Chemo if it comes up. All the medical bills I paid and I'm broke. And still ..... nobody will conclude its my bladder. My brother tells me "oh that's good they found the Appendix problem, they can remove that".... Thing is I never had any problem with my Appendix ! So ..... like I told them all, if I have late stage bladder cancer that caused all of this and my body is shutting down, does it make sense to remove my Appendix, get Kidney Diolosis possibly, then get a bypass to use an Ostomoy bag ? And what's their answer ? "Get the Cystocotpy done 1st stop worrying, the bladder has nothing to do with any other issues your having"..... LOL ! I guess it's just a coincidence that my Kidneys are failing, my Appensidx is enlarged, Intestine stopped working, I can't Pee much and blow up and it's very dark cloudy yellow, I'm getting weaker, and there is something in my bladder growing for over a year.... They tell me "quit playing docotr and stay off the internet, one of it's true".. Lol ! I'm no doctor, but I think a 10 year old kid could figure this one out. The doctors don't want to. They want to make as much money as possible before they tell you "we found the problem and it's to late". Like I told everyone, I'm very affraid about what's t come, BUT .... I will still have POTS all my life no matter what. If I get my bladder removed, all the surgerys, bypasses, Chemo, sell my house to pay for all of it, then what ? I can live a longer life just being able to walk maybe 50 feet at a time, not being able to go to the store, drive, go on vacation, depend on my nephew across the street to bring me some soup and things from the store, and go from the bed to the sofa like I been doing for 3 months. And my "getting out" is to go to a doctor IF I can get a ride and walk in the door without falling down. Family tells me to go to the University of Chicago or Northwetern University. 25 miles away. Like I can drive, or walk in the buildings. They can't take me, I can barley walk to a car let alone sit in one for an hour. I been through this for 3 months with 20 different doctors. Call and tell them it's an emergency, I havent had a bowel movement in 4 weeks, and they tell you "I can get you in sometime in April".... Every doctor, new or not. I live alone, have about 3 people still around that call me and come around maybe twice a week to check on me. Next week I go for the Cystoscopy, then it will be a week or so to get the results, ( which aint hard to figure out since my body is shutting down), then in 4 weeks to schedule a scope for the bowels. and I have people tell me to go to different doctors. Start all over again from square 1 ? I hear "hang in there, don't give up"........ I wish I can tell my body that and it would listen but they don't understand how fast all this happenend, and how fast things are progressing. It's not up to me. When it's my time to go, I have no control over it. I called places for a Nursing home, or probably even Hospice care in the near future, I can't afford it because I'm no on Medicare or Medicaid, and they wont take me because I have to many problems. I have to have documents from the doctors anyway to be in a place like that, and if it takes 3 or 4 more weeks to get that done, time is not on my side wih all that has happened. January 4th I had POTS, blood, urine, everything was still perfect, 5 weeks later now....... time is not with me. I find out I have POTS, the next week they find my bladder problem, go to get that looked into, they find a new problem with my kidneys, go to get that looked into, they find a problem with blood in my stool, get that looked into, he finds my Appendix is enlarged.. Every week, something new, and NOW they will do a test and see if it's the bladder causing the problem. AFTER it damaged everything else. 3 weeks ago the Urologist said "we have time, if its cancer it didnt spread cause my blood and urine are coming back good". 2 weeks ago ER doc looks at results and asks "whos my oncologist" and checks my spine to see if it got in my spine......... all of this because back in November of 2017 when I had something going on with my bladder, the doctor failed to do a urine test, or send me for a scan.......... Gave me antibiotics Thank you for letting me vent...........
  2. dannyg

    Doctors - To late for me now

    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...
  3. dannyg

    Doctors - To late for me now

    Thank you....
  4. Starting last week in November .... Never had a health issue and perfect health before last week in November. .... November, Had tenderness in my bladder area. Doctor gave me Cipro for 10 days. Week later, ears ringing, light headed, tests, 7 trips to ER, 3 hospital stays. Diagnosed with POTS. January this year..... Was having no bowel movements. Sent to ER. Scan found a cyst on bladder. He siad its been there a while to see a Urologist ASAP and a GI for my no bowel movements. Went to see Urologjst last week. Said it dont look like a cyst, its a mass. Wanted me to see a Cardio doc to get the ok for surgery. Didnt say if its for biopsy or what. Got the ok for surgery, go see Urologist on Feb. 15th to see what he says. Now, still no bowel movements unless I take Milk Of Magnesia to go. Then its diarhia. Also, 2 weeks ago my kidneys were 0 for Protein. 0 to trace is good. Over 20 is bad. Last week my Protein was 10. From 0 to 10 in a week. Urinating .... not much for the amount Im drinking. Dark yellow rarely light yellow. Very worried and scared. All of this in 2 months. Since November. Dont know whats going on, and its all more doctors, more tests, no answers. Seeing the GI doctor today, but the scan showed no blockage, and I know POTS make slow bowel movements for some of us, so I dont know what the GI doctor will say or do. Colonoscopy wont tell me anything, and I cant drive much and have no way to get around to do all these tests. By the time I get 1 test done, they find 2 more problems. Strange thing is .... Last 3 days I been walking, moving, doing everything like I never had POTS. Been feeling real good, not getting light headed, nothing. But I have all the other issues now that I dont know what they can do about. Anyone else go through all of this ? I think I have more than POTS. Maybe the bladder issue is causing a bowel issue ? Dont know and I think by the time they find out it will be to late
  5. dannyg

    HIGH CHLORIDE ???!!!

    What is your Protein level in your Urine ? High Chloride in blood can be dehydration or kidney problems. High Protein in Urine can mean Dehydration or Kidney Problems. See what your Protein level is in your Urine
  6. dannyg

    Autonomic Failure ?

    Multi vitamin. Im taking something to make myself go till I see GI doc for test on the 11th. Have to call him monday. Its making me go green watery who knows what... Now Im scared.
  7. dannyg

    Autonomic Failure ?

    Thank you Hutch..
  8. dannyg

    Autonomic Failure ?

    Went to the GI forvmy no bowel movements. He found blood in my stool so now I need a Colonoscopy on Feb. 11th to see what that is. I been telling them for 2 months I have tenderness in my lower left groin area. They tell me nothing is there. Its bone and no hernia. It has to be my Diverticulitus. 4 years ago I had the same issue. No movement, tenderness in that area, and after 4 weeks they found out I had an infection in my Sigmoid Colon causing a stoppage. It was really Inflammed. Never had a fever then, WBC was good, but I had an Infection. I hope thats all this is. I have to go Thursday to find out about my bladder situation sice I got the ok for surgery from my Cardio doctor. Dont know if its for a biopsy or what kind of surgery, have to ask and find out. Then Colonoscopy on Monday the 11th.
  9. dannyg

    Autonomic Failure ?

    I have a GP I just seen 2 weeks ago. Problem is new issues pop up after I see the doctors. Random sample yes. 10 is high. 20 I think is warning sign of Kidney problems. Maybe the bladder issue is causing all of this.... I can only hope. Jt is kind of strange how 1 sample in the hospital was "trace" and a week later I was sent to get a scan for my bowels to check for blockage it was 10. 4 weeks ago I had the 24 hour urine test, it must have been ok since they never said anything. 1 week to go from 0 to 10 ? Confusing.
  10. Went to a new doctor today. A GP - Endocronologist. Seems to now more about POTS and is willing to listen and accessed all my records and checked everything out real good. He said basically the same thing about me and meds. Im to all over tbe place with readings with my BP to give me an exact medicine. I also told him I havent been going number 2 much. Sunday morning, and not much today. I can hear my Intestine churning, nothing flowing. I did have a flare of Diverticulitus bad 5 years ago that blocked me up. I asked him if it's POTS related, he said likely not. Maybe my Diverticulitus again ? Not sure yet. Said to call him in a few days if it dont clear up he will give me an Antibiotic. I was taking Florenef which I had bad problems with raizing my BP to much, so this doctor bas me starting on Midodrine 1 in morning, 1 in afternoon, 2.5 mg. I hope it don't do what Florenef did and raise it to much. Is Midoxrine milder and easier on the BP than Florenef ? Neighbor took me to the doctor, when be called to say he was warming up the car and will be out front in 10 minutes, I "panicked" and was so worried if I could walk to much, didnt know the place, how far I would have to walk, and sat down to wait for him and I could not cstch my breath or stop my pulse from skyrocketing. Its been running 150 all day standing up, and I have to walk to the car, and walk after that ? I was ready to call his cell and tell him I cant make it. I get in the car, shaking the whole 30 minute ride, sipping on water, clammy and nervous. Get to the building, good thing it was ground level, walked 100 ft. and I sat down breathing and looking like I was gonna die. They wanted to weigh me... I told them I cant stand up I will pass out. They take me in the room to check my vitals. The girl left and said doctor will in shotly. Sat there 10 minutes shaking and legs feeling heavy. Good thing he had that table thing i the room. I had to stretch my legs out so Iaid down for 5 minutes and got up right before he came in. Leaving I was feeling better and could stand for about 2 minutes at a time. Dont know if it was a "full attack" or not, but sure felt like it for about 2 hours.
  11. Was wondering .... How long have you had POTS ? Has the symptoms got better since you 1st got POTS as time went by ? How much are you able to do ? (Drive, stand, walk, shop, get out and about) ? What are your Pulze and BP readings ? I been stuck at home. Can get around maybe 2 minutes standing or walking. Sitting, my legs get heavy and have to lay down after about 1/2 hour. Makes it hard to get to appointments even sitting in a car and then office. BP is all over. 145/95 to 103/72. Pulse laying 85, standing 110 high as 150. I get pressure in my head and ears ringing standing to long. Some days 10 minutes 1 time, some days 1 minute. Light headed when standing. Was everyone worse or better and at least get around a little more as time went by from when they 1st got POTS ? Thank You
  12. dannyg

    Surgery and POTS

    Bad news today. Worried about POTS and I went today to the Urologist. Had a scan saturday to check for a bowel obstruction for my motility problem and they found a cyst on my bladder. Went to Urologist today and he said its a "mass" on my bladder. I have to get more blood work done, then see a Cardiologist to get cleared for surgery and he would like to do this in the next few weeks. I asked him if he can tell what it is or how bad, he just said I had it a while, before my POTS in November and it looks "funky". I have to get blood work and the OK from the Cardiogist. He didnt say anything spread or what it is, just said its on the top front part of .y bladder. Has everyone done ok with their surgerys with POTS ? Anyone have possible bladder cancer or anything like this ?
  13. dannyg

    Surgery and POTS

    Has anyone ever had Chemotheropy with pots ? I did a seach and no results.... Just wondering. Doctor have me a Cardiologist. She called. See her friday next week. Problem is she dont work at my local hospital here anymore. She is 40 miles away ! I called the Urologist and left him a message I cant get there. Has to be closer. Waiting for him to call back. Wondering about Chemo and POTS though just in case...
  14. dannyg

    Surgery and POTS

    I will. Thank you Pistol..
  15. dannyg

    New cardiologist- need to vent

    I'm in the same situation. I find a doctor, at 1st they seem good, 2nd visit I hear " You have a nerve condition causing this there is nothing we can do". I in a way can't blame them cause nothing works for me. Sitting my BP is 135/90, standing it goes to 100/72. Meds either raise or lower BP so I fall in that in between are where either med would cause me problems. So Im not on anything. They cant control your Pulse and mine goes from 115 to 145 depending on what my body decides to do each time I get up. Last doctor I wore compression socks he said to use. 2nd time he said get the higher ones they are better. Im not wearing any. I notice when Im in a car or sitting for a long time going to doctors, my legs feel heavy and worse with them on. After half an hour my legs feel like they are lead weights and its harder to stand.
  16. @katyroq This is an old post but I been having a cough like this the last few days. Does it still happen ? The cough. ?
  17. dannyg

    Cyst on Bladder

    Anyone ever have a Cyst on their bladder ? They found one on me Saturday in the ER when I went to have my bowel problem looked into. Scan showed it. Going to doctor today and going to tell him Im goinv to ER. Put me in hospital and do something wjth it. It dont make sense to make an appointment with a urogist which I cant drive to so he can tell me I need to have it removed go to the hospital. Anyone ever have a bladder Cyst ? And still no bowel movement ... Supposed to see a GI thursday. I cant drive.
  18. Wondering. I wake up at night a lot and when I do my heart is racing. It is probably what wakes me up. If they put you to sleep for surgery what happens to you HR ? Im sure a lot of members had surgery with POTS they have them high heart rates at night. Was wondering if anyone might have thought about it or knows about it.
  19. dannyg

    Test today for Constipation

    GP is in on Tuesday and Im supposed to see him. If I can drive. Will try and make an appointment with the one the ER told me to go see.
  20. Long story. Went today and forced myself to drive 14 miles each way to the ER for an xray and scan for my Constipation. No bowel movember for 7 days. Doctor had it set up and glad I went to ER instead of making appointments. I drove, felt horrible, got half way there and started worrying. Pulse stayed at 85 to 90, half way there it started staying at 105 to 110. I was ready to turn around and come home. I kept going, made it, walked in the ER, grabbed a wheelchair and was out of breath and shaking. I rolled in and told them what I needed, and they said doctor ordered the test they know what to do... I was glad. Had an xray and scan with contrast. They gave me the hospital stuff to cause me to go. Nothing worked at home. Horrible, cleaned me out pretty good. Yellow diarhia. Horrible. Drank a lot of water to. Felt better. Doctor comes in... Says I have a 4cm cist on my bladder and its probably been there a while see a urologist. And see a GI doctor for my intestine issue. No blockage. Not a diverticulitus flare up. My PCP gave me Antibiotic yesterday in case it was diverticulitus but Im going to keep taking it anyway just to be sure. I asked him if it could be Hastroperisis, he just said to see the GI doctor. All the 16 mile ride home I was scared, nervous, worried about my Pulze, felt like my heart was pounding and racing, ran in the house, stood up, checked my Pulse and could not believe it was only 90. Crazy, sometimes I get up, it shoots to 150. I ran around like a nut, and it was 90. I felt pretty good Ssd part ..... It all started back in November when I went to the doctor for my yearly check up, told him It was tender in my lower left side, he have me Cipro, No test, nothing. Gave me Cipro. Then all the symptoms of Pots started popping up. This ER doc told me Cipro is bad, can cause esrs to ring, and mess people up. I told him it started with my ears ringing, then lighy headed, then them "attacks". Now I have POTS. I still believe it was that Cipro. So when this started, it started as tenderness in my lower left side, took Cipro, hospital 6 times since, found out I have POTS after all the headaches, head pressure, and all the symptoms, and I still have the tenderness in my lower left side that started all this in November. Was never a bladder infection, it was a cist all along.
  21. dannyg

    Test today for Constipation

    Has me worried. Came home, can hear my intestine making noise, not sure if Im empty now or hungry. Affraid to eat. Ate very little today. Have to call for a Urologist and GI doctor tomorrow. I know Im going to get agrivated tomorrow trying to get an appointment "ASAP" like the ER doctor said to do. And I would be a new patient caue I never needed a Urologist. My GI doctor I cant get in until Feb. 12. Will be another day getting frustrated on the phone tomorrow trying to see doctors.
  22. dannyg

    Test today for Constipation

    Do Antibiotics affect BP ? Been taking Amoxicilian for 4 days and it seems my BP been running low. I got up toxay though and it was 130/115, then an hour later its been staying around 112/75.
  23. dannyg

    POTS?

    Post back and let us know how it turns out.
  24. dannyg

    Mitrodine compared to Florenef ?

    I hope so and hope I can wait that long. Still no bathroom ! And I havent been diagnosed and didint have diabetes 2 weeks ago last blood test, but been waking up in the morning very cold and shaking. I eat a little and then feel a little better. Any ideas ? Havent been eating much, and before I got POTS I would wake up hungry, but never shaking and cold.
  25. dannyg

    Mitrodine compared to Florenef ?

    Made an appointment and as usual ... cant get in till mid February. Can never get to any doctor when I need to.... Frustrating.
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