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Lisa
@techi

Posts: 303
Joined: Jun 18, 2017

Doctors who need help or maybe patients

Posted by @techi, Thu, Sep 6 8:51pm

I went to the mayo clinic last year and all the diagnoses that my doctors gave me were ruled out except my portal vein, and autoimmune encephalopathy. Then in the last three months my ammonia levels were elevated. I was taken off my lactulose and then put on it again. So the last reading was 58 and it was supposed to be no higher then 51. So my hematologist gives me another med with the lactulose. Zifaxan okay. The first evening everything was fine the next morning l took one and it was a disaster. I threw up couldn’t get out of bed to go to the bathroom. I had to call my daughter. I continue to throw up. I never in my whole life threw up that much. I began throwing up bile.The next day l was so weak l could do hardly nothing. On Monday l went to my rheumatologist and l checked in and then had to fill out paperwork. As soon as l took it back l fell and l have a boot on from a fractured ankle. I was so embarrassed. The nurses helped me my mouth was bleeding. Now l was doing okay up until that point. My husband call my liver doctor and he tell us to come to the hospital. That wasn’t what l wanted to do but my husband insisted because I was still throwing up and he thought it was my ammonia levels. Everything came back normal but they wanted me to be admitted. I told the er doctor l wanted to go home but she insisted and my husband wanted me to be checked out. Now she said my ammonia level was 22. 2 days l needed help just to go to the restroom. Then they ran a EEG it came back normal so the neurologist who l wanted to have nothing to do with but since l seen him last had to see him and the liver doctor both said everything checked out normal. Now they gave me Keppra IV and as soon as the nurse started as l felt it going through my body l felt my chest burning. Then my hands started to tremor. I tried to call the nurse but dropped the call light. I tried to press the call light on the bed but my hands were shaking so much l couldn’t do it. Then l finally got a hold of the nurse now l dont know if it was a seizure or allergic reaction because my head began shaking and then l don’t remember what happened next but when l woke up l was alright. Then the next day they gave me something and l was trying to text my daughter to bring me something for breakfast and l couldn’t text her. When she came to bring me my breakfast she said l couldn’t understand what you were texting me. So l had to call my husband to tell her and he said my speech was slurred. So we were all frustrated with the doctors because they kept saying everything was fine. I kept asking them about my ammonia levels and it was always normal. Just to find out the only checked it twice. Once before l was the admitted and again when l was discharged. I called my gastroenterologist at the mayo clinic because he said if this happens again come back to see him. Easy said then done 11hr driv ed but now l know it’s worth it. So we told him what happened and he said to ask the doctor to run a test because one of the shunts in my liver is leaking blood slowly so he wasn’t very concerned right then to replace that shunt. So he told us they might not do it because l had gotten a second opinion and the mayo clinic found something. Now looking at my records the diagnoses that the mayo doctors ruled out l all of a sudden got it again. And now depression, and anxiety. And diagnoses l never knew l had now its TIA, a trophy and chronic microangiopathy and the mayo doctor ruled that out, frontotemporal degeneration after the l had a PET at the mayo clinic the results normal. A 4hr memory test at the mayo clinic and it was normal. My memory is absolutely fine and then they put neurological/behavioral symptoms. Oh and the doctor at the mayo clinic put possible autoimmune encephalitis they said on some sheets l had previous encephalitis and then ? encephalitis. I was diagnosed with encephalitis since 1997 at the hospital l worked for and yes at the beginning l had issues because I came of my medicine and also l was given so many meds when l was admitted to the hospital in 2014 that’s when l had problems with my liver. Never had any problems with my liver nor nobody in my family. Then on my records they said l fell at my orthopedic instead of my rheumatologist. I had physical therapy come and it was a she and they said he. The doctors discharged me and then they said patient and family insisted to be discharged. Then when l showed the nurse how l was texting she tells me yes that’s one of the symptoms. Then l am allergic to aspirin. I have been for years since about 2005 and you shouldn’t take it if you have liver disease and what does the doctor tell the nurse, it okay for her to take it. I told her l bruise when l take aspirin and sure enough l had bruises. Thank God l have pictures of that. So all and all l just thank God for his grace because if not l probably be dead. So l am glad my gastroenterologist at the mayo clinic can see mr so if l need to have my shunt replaced l don’t have to have it done here.

REPLY

Techi. I feel bad for the things the( good )Dr,s put you through thats horrible what are they teaching In med school?

@techi Hi, Lisa. Just thinking. If I had not been through pretty much the same thing I would say I did not believe you. But I have been there and been through pretty much the same. Now I am to the point of getting a good laugh out of the old question, "What in _(*& is gonna happen next? I have not had any sex capability for about 10 years, since I started bleeding through my penus. I have not even leaked urine. Just blood, sometimes a cup a day. But now I have started leaking semen. as well. Sounds weird, no sexual activity but leaking semen at 78. And the rheumatologist and cardiologist and kidney doctor and urologist and GP and pulmonologist and oncologist/hematologist say I have no problems, just lazy because I don't want to go back to work. At 78? With all the stuff I have? (https://bit.Ly/1w7j4j8) I guess I should celebrate that I have three doctors who say I have Gelsolin. Anyway, when you find a doctor who will actually help you, blow kisses to the heavens for minor favors.

Amen to that!!!

@lioness

Techi. I feel bad for the things the( good )Dr,s put you through thats horrible what are they teaching In med school?

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@lioness l really don't know. I am checking out if the doctors in my state go to continue education classes in other states or even medical schools, teaching hospital or what have you because after 4 visits at the mayo clinic with the doct OP ed l had confidence with except the neurologist. When l first came in she thought she knew everything and what my doctors at home said was surely correct but as l kept going to the different doctors they kept ruling out everything they said especially me being mentally disturbed. I went to 3 psychiatrists there and she had me scheduled for a 4th one it when she found out about my portal vein and the shunt that was slightly leaking blood she couldn't say nothing. She was quiet as a mouth. Sl now these doctors here are crazy and the patient knows nothing. When you are rated a state with the worst medical system it's no wonder we don't get good medical care. There is only one doctor they have listed that treat patients with autoimmune encephalitis and shes horrible from references. Then my gp sends me to a transplant clinic and doesn't dr. which l know he's a hematologist but l was going to a plan old gastroenterologist. He retired and they referred me to another one and he sends me to the transplant clinic. I just have to keep praying and not let them upset me. At the end of the month I get a new gp. I hear he's good so we will see. I am praying.

Liked by lioness

@techi , you prove my point exactly. Each of us must be our own life advocate. We simply cannot depend totally on others to protect us from the hard knocks of life. Hang in there. Until five years ago I would have done ANYTHING exactly as my cardiologist said. Not now.

Liked by lioness

@techi

@lioness l really don't know. I am checking out if the doctors in my state go to continue education classes in other states or even medical schools, teaching hospital or what have you because after 4 visits at the mayo clinic with the doct OP ed l had confidence with except the neurologist. When l first came in she thought she knew everything and what my doctors at home said was surely correct but as l kept going to the different doctors they kept ruling out everything they said especially me being mentally disturbed. I went to 3 psychiatrists there and she had me scheduled for a 4th one it when she found out about my portal vein and the shunt that was slightly leaking blood she couldn't say nothing. She was quiet as a mouth. Sl now these doctors here are crazy and the patient knows nothing. When you are rated a state with the worst medical system it's no wonder we don't get good medical care. There is only one doctor they have listed that treat patients with autoimmune encephalitis and shes horrible from references. Then my gp sends me to a transplant clinic and doesn't dr. which l know he's a hematologist but l was going to a plan old gastroenterologist. He retired and they referred me to another one and he sends me to the transplant clinic. I just have to keep praying and not let them upset me. At the end of the month I get a new gp. I hear he's good so we will see. I am praying.

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Maybe you already said, but what state are you in? Its sounds like you are in Texas. I go to the University. My RA doctor is SO UNSURE of what is wrong and how to treat me. She sent me over to the hospital for two infusions and I FELT SO MUCH BETTER. I told her this and could she schedule me again when it is appropriate? She didn't . She had sent me to an Oncologist also. I went for two times and finally asked…WHY are you doing the tests on me? Well, you have about 1% positive for Multiple Myloma. WOW! He said, I will check again in 1 Yr. I am 76 and I may not be here in one year. Further, my record already says, I will not do any Chemo or Radiation. So he probably figured, there was no money to spend on me. I have Excellent Insurance. The only doctor who has actually treated me well is my Spine Doctor. BUT, unless they tell you, you will not know the NEW LAW on this. THREE times in my back and three times in m neck. All different drugs. Then they determine which drug proved to do the best. I said, well none did not what. He said, I don't know. Maybe it is because I am at the University. I know they treat Charity cases. But, I am not one. OMG. 1 1/2 yrs there and no diagnosis. My pain is severe. The only drug the University approves for pain in Tramadol. I think it is time to move on to real doctors. What can I say. I have terrible pain. Thank God for the Hemp

Liked by lioness

@seanlroop

Amen to that!!!

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@oldkarl. I know you know exactly what l am talking about. I will be praying for your healing and to get some good care and a doctor who will listen. I just have to stay in faith and keep from thinking about what these doctors are doing and saying but when you know what you are talking about and they belittle you it's hard sometimes. I mean when a doctor hear you keep falling going to rehab. Having my surgeon tell me something happened in surgery and l had to call your liver doctor. It should tell my gp something is going on. Then when l had to have 3 root canals after l fell. I told my dentist my doctor didn't believe that l just fell instead l am depressed or stressed. He told me to tell him to call me. So l just have to pray and keep going but to add more diagnoses and the ones that the mayo clinic ruled out just gets to me. I have to just listen to Joel Osteen when he talks about his mother that had stage 4 liver cancer and they knew they had to pray and now it's been 34yrs and shes cancer free. And when you are going through something it also affects the family so doctors need to consider the whole family. My husband was so mad he was cursing because they were not doing anything and we are going through the same thing every time with these doctors
If you don't know about something send your patient to someone who does. I only had one doctor who did that. He told me l have to go to my colleagues to find out what we need to do. I have had some wonderful doctors in the past who really cared about their patients but nowadays it all about money.

Liked by gingerw

@oregongirl

Maybe you already said, but what state are you in? Its sounds like you are in Texas. I go to the University. My RA doctor is SO UNSURE of what is wrong and how to treat me. She sent me over to the hospital for two infusions and I FELT SO MUCH BETTER. I told her this and could she schedule me again when it is appropriate? She didn't . She had sent me to an Oncologist also. I went for two times and finally asked…WHY are you doing the tests on me? Well, you have about 1% positive for Multiple Myloma. WOW! He said, I will check again in 1 Yr. I am 76 and I may not be here in one year. Further, my record already says, I will not do any Chemo or Radiation. So he probably figured, there was no money to spend on me. I have Excellent Insurance. The only doctor who has actually treated me well is my Spine Doctor. BUT, unless they tell you, you will not know the NEW LAW on this. THREE times in my back and three times in m neck. All different drugs. Then they determine which drug proved to do the best. I said, well none did not what. He said, I don't know. Maybe it is because I am at the University. I know they treat Charity cases. But, I am not one. OMG. 1 1/2 yrs there and no diagnosis. My pain is severe. The only drug the University approves for pain in Tramadol. I think it is time to move on to real doctors. What can I say. I have terrible pain. Thank God for the Hemp

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@lioness l live in Oklahoma and l have good insurance that's why they take advantage and run all these test. I have had all surgery, shoulder, back, foot, and then my liver procedure. Then l fractured my ankle again and the doctor said the way you fracture your ankle that not common so l might have to do surgery but l will put you in a cast and see what happens. I told him no your not doing surgery. I can only say thank you Jesus l didn't have to have surgery. And to keep falling and no answers is unreal to me. When l lived in NY l was told l had shingles in 1978 and here they just started talking about it in 2010. When l had encephalitis in 1997 then didnt start talking about until 2010 and my professor sister had it and they kept saying at 65yrs and older this can happen to you l was 39. I asked my professor how old her sister was when she had hers she said 42. So that was definitely before 65. Then l was in 2 mental hospitals because it was encephalitis but now they say its autoimmune encephalitis and you can have mental tendencies but it's not. And l really wouldn't have found anything about it until they had a documentary of a women who had it and she wrote a book. So l keep telling the doctors here but they don't care. And l am the point l don't want to go to er because always they have a psychiatrist right near them. And when there nothing they can say they have to put something down because the psychiatrist came to see you. My husband was telling me about a doctor in Texas buy she wants you to pay first and you file with your insurance because she knows the insurance is not going to give her all she wants to charge. And l don't know if you know about OU hospital but if you talked to people out here they will say that's the worst hospital. Then on my records the doctors say l have been to so many doctors and hospitals and the diagnosis is the same and that's because your records follow you and the doctors never say another doctor is wrong but when l went to the mayo clinic they did say what wasn't diagnosed correctly. And l was given 2 meds that were recalled and meds by doctors and the pharmacy l am allergic too. Our medical teams has really changed it's a business not medicine.

@techi Gosh, Lisa, if you keep posting I will soon have a complete symptomology of my own primary hereditary Light Chain Amyloidosis, Gelsolin. Or something very close. Might have to send you to my friend, Ron Orlowski at MD Anderson in Houston, or Dr. Somers. As soon as I can do it, I will be seeing them. That way I can also see my daughter in Hearn. Anyway, Liver problem. Of course, probably weakened by fibrosis. Root Canals? Do you realize that some ALs, like mine, cause teeth to crack, and then fall out at even the slightest tap? I have lost 4 so far. Don't know what else to say. This morning my heart ran at 153 bpm for about 10 minutes. My machine said "Irregular Heart Beat" My Glucose shot through the roof for a few minutes. My eyes were nearly blind for about a half hour. I am bleeding from penis, anus, mouth, nose, eyes. My skin looks like ##### all over my arms and legs and buttocks. But I am 78, so it is to be expected, I suppose. Anyway, my kidney guy says "Have a nice day."

@techi

@lioness l live in Oklahoma and l have good insurance that's why they take advantage and run all these test. I have had all surgery, shoulder, back, foot, and then my liver procedure. Then l fractured my ankle again and the doctor said the way you fracture your ankle that not common so l might have to do surgery but l will put you in a cast and see what happens. I told him no your not doing surgery. I can only say thank you Jesus l didn't have to have surgery. And to keep falling and no answers is unreal to me. When l lived in NY l was told l had shingles in 1978 and here they just started talking about it in 2010. When l had encephalitis in 1997 then didnt start talking about until 2010 and my professor sister had it and they kept saying at 65yrs and older this can happen to you l was 39. I asked my professor how old her sister was when she had hers she said 42. So that was definitely before 65. Then l was in 2 mental hospitals because it was encephalitis but now they say its autoimmune encephalitis and you can have mental tendencies but it's not. And l really wouldn't have found anything about it until they had a documentary of a women who had it and she wrote a book. So l keep telling the doctors here but they don't care. And l am the point l don't want to go to er because always they have a psychiatrist right near them. And when there nothing they can say they have to put something down because the psychiatrist came to see you. My husband was telling me about a doctor in Texas buy she wants you to pay first and you file with your insurance because she knows the insurance is not going to give her all she wants to charge. And l don't know if you know about OU hospital but if you talked to people out here they will say that's the worst hospital. Then on my records the doctors say l have been to so many doctors and hospitals and the diagnosis is the same and that's because your records follow you and the doctors never say another doctor is wrong but when l went to the mayo clinic they did say what wasn't diagnosed correctly. And l was given 2 meds that were recalled and meds by doctors and the pharmacy l am allergic too. Our medical teams has really changed it's a business not medicine.

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techi I live d to n Pa all my life moved to Calif voted n 2010 Ive noticed the health system isnt the same as it is back east why I dont know

@lioness

techi I live d to n Pa all my life moved to Calif voted n 2010 Ive noticed the health system isnt the same as it is back east why I dont know

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Amen

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