1. < Autoimmune Diseases

Thankful for finding the correct diagnosis

Posted by Lisa @techi, Oct 2, 2017

I know all my problems is just as small as an ant. I just have to remember the things God has brought me through. The doctors where l lived said l had angina, large h eart, ms, Parkinson disease, bipolar, schizophrenia, copd, asthma, elevated ammonia, and so many other diagnoses. I began to think about Job how he went through and God brought him through better than before. There was something just not right. I just couldnt believe all those diagnoses. I was unconscious so many times. I was falling a lot and l was told it was only syncope and that was true but why? I tore my cal from all those falls. And when l was admitted in the hospital in 2014, l never had any of these diagnoses before. Oh an l forgot encephalitis, autoimmune encephalitis, encephalopathy. I never even heard of all these diagnoses. So in 2014. I was on antidepressants and that's what they thought l was allergic too. But it was the goodness of God that I am off of that. Now when l was in the hospital l was only allergic to codeine now l can't even count how many drugs l am allergic too. When l see the doctors they are afraid to give medicines. Then l guess l wasn't getting any better on the hospital so they wanted to put me in a nursing home. But God didn't allow that to happen l got better. So then my new neurologist said l had conversion disorder. That was the last straw. So deep down inside it just didnt sound right or felt right that l had all these problems. So l went to the Mayo clinic and my internal medicine doctor looked at all my records and she said you really been through it. She said you don't have biplor or schizophrenia. She said l worked with patients who had mental illness and your not one of them. Well that was the beginning of the blessing. She set me up with all the doctors that l needed to confirm the diagnoses. Before they couldn't draw blood it was with such difficulty from so much scare tissue. The phlebotomist was able to get 19 values of blood in one stick. Then l had to see the neurologist. She said l have been a neurologist for along time. But l said in my mind not as long as God. So she told me if everything comes back normal, l will have to send you to behavioral therapy. Well everything came back normal but my Ana was still high. So they wanted me to have a PET test for dementia. And that came back normal. She was going to send me to see psychiatrist lone saw two. The last on was a Bahavorial psychiatrist. She cancelled that appointment. When l saw the cardiologist. I didn't have those problems. He told me you have high blood pressure that uncontrolled but it in controlled now. Then l was diagnoses previously for dyephesia, firbromuscular , false. Seizures? No dementia, no me, no Parkinson disease, COPD. So the other 3 appointments she cancelled. She told d me you were misdiagnosed. Praise God. She said you had encephalitis and in 2014 they said it was autoimmune encephalitis, encephalopathy?. Yes l do have elevated ammonia, asthma instead of COPD and when l asked how l got the elevated ammonia. My previous gasterentogist said it was from medicine l was taking for all these years. Now that just me not everyone else so definitely don't think that for you. So the vascular doctor said one of the shunt are open and they did the procedure wrong. Isn't that something so when l was falling and losing consciousness, hallucinating, and not acting like myself. And they said the problem was the elevated ammonia because that can happen and it can sometimes your levels can fluctuate so now that one shunt that open we have to fix it. Now that was definitely and answer to prayer and l was at the right place at the right time the Mayo clinic and there doctors really care.

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 2, 2017

Hello Lisa (@techi), You really have been through a lot. Thank you for sharing your struggle getting through all of the different health problems and finally getting to the bottom of it with an accurate diagnosis. Your story shows how important it is to be persistent and advocate for yourself.

Are there any tips you can share that helped you get to the bottom of what was causing your health problem?

John

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sjudy | @sjudy | Oct 2, 2017

too have had multiple diagnosis. Newest is some kind of small vessel disease that blocks arterioles and small vesicles. I have been put on every medication there is since 2001 and just finally I found an Internal Med doctor who also specializes in multiple diagnosis and auto immune diseases. God sent him to me I'm sure. When the neurologist said Dr. Chivirani I thought I heard Dr. Kahn and so I googled Abed Kahn as the first name popped into my head. Turns our he had seen me in the hospital when I overdosed on medication by taking my night meds instead of morning meds. My blood pressure dropped and being a nurse I knew the symptoms. I don't know what I had have done if I didn't know.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 2, 2017
In reply to @sjudy "too have had multiple diagnosis. Newest is some kind of small vessel disease that blocks arterioles..." + (show)
@sjudy

too have had multiple diagnosis. Newest is some kind of small vessel disease that blocks arterioles and small vesicles. I have been put on every medication there is since 2001 and just finally I found an Internal Med doctor who also specializes in multiple diagnosis and auto immune diseases. God sent him to me I'm sure. When the neurologist said Dr. Chivirani I thought I heard Dr. Kahn and so I googled Abed Kahn as the first name popped into my head. Turns our he had seen me in the hospital when I overdosed on medication by taking my night meds instead of morning meds. My blood pressure dropped and being a nurse I knew the symptoms. I don't know what I had have done if I didn't know.

Jump to this post

Hello @sjudy, Welcome to Mayo Connect. Thank you for sharing your story. Connect is a great place to ask questions and learn what others are doing for treatments. One thing we all have in common is our struggle to get to the bottom of what is causing our health condition.

If you feel comfortable sharing, were the doctors able to give you a specific diagnosis or treatment this time?

John

REPLY
Lisa | @techi | Oct 3, 2017

Yes John all the diagnoses but 2 which are still being tested and consulting with the team of doctors which l think should be at all medical facilities. The medical employees who are caring for patients should be a team. I worked in a hospital where doctors aren't listening to nurses and other staff. Health problems are changing constantly and one of the doctors told me some of the meds l was taking was old meds and l guess they are not effective for illnesses today. And l also know everyone's body reacts differently but l have been on a couple of diuretics for years and when l tell the hospital here my general practice doctors and the specialized doctor for heart disease that my legs are swelling l just get another diuretic. Instead of finding why it's here take more drugs. So l was so blessed to get answers. I really don't know if the doctors changes your meds if you have your own doctor in another state. I hope when l give all the reports to my doctors they will take the advice and medical outcome from the Mayo clinic. One of the doctors at the Mayo Clinic said l don't know how you will get the previous diagnoses changed when you have a different outcome. So it's seems like a second opinion is only for your concerns and satisfaction because doctors or other medical employees don't want to admit they made a mistake. I see now when l was talking to people who come to the Mayo Clinic that they are getting the best care. So coming up soon this will be the 4th time coming to the Mayo Clinic but it's all worth it. And l am truly thankful to my internal medicine doctor who ordered all the doctors, test, and the team consulting with each other to give me the good news. The team at the Mayo Clinic reminds me of my retired gerentologist who told me about my liver. He told me l never seen and extra vein in, I've seen it in medical school but not in a human. Well that's not what you want to here from your doctor. But he also said I m not sure what's the best way to handle this but l will talk to my colleagues. Well he was definitely being honest . And it wasn't money it was wanting the best for his patients and trying to get the best outcome. That's how l feel about the doctors at the Mayo clinic doctors. Thank you John for all the support.

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 3, 2017
In reply to @techi "Yes John all the diagnoses but 2 which are still being tested and consulting with the..." + (show)
@techi

Yes John all the diagnoses but 2 which are still being tested and consulting with the team of doctors which l think should be at all medical facilities. The medical employees who are caring for patients should be a team. I worked in a hospital where doctors aren't listening to nurses and other staff. Health problems are changing constantly and one of the doctors told me some of the meds l was taking was old meds and l guess they are not effective for illnesses today. And l also know everyone's body reacts differently but l have been on a couple of diuretics for years and when l tell the hospital here my general practice doctors and the specialized doctor for heart disease that my legs are swelling l just get another diuretic. Instead of finding why it's here take more drugs. So l was so blessed to get answers. I really don't know if the doctors changes your meds if you have your own doctor in another state. I hope when l give all the reports to my doctors they will take the advice and medical outcome from the Mayo clinic. One of the doctors at the Mayo Clinic said l don't know how you will get the previous diagnoses changed when you have a different outcome. So it's seems like a second opinion is only for your concerns and satisfaction because doctors or other medical employees don't want to admit they made a mistake. I see now when l was talking to people who come to the Mayo Clinic that they are getting the best care. So coming up soon this will be the 4th time coming to the Mayo Clinic but it's all worth it. And l am truly thankful to my internal medicine doctor who ordered all the doctors, test, and the team consulting with each other to give me the good news. The team at the Mayo Clinic reminds me of my retired gerentologist who told me about my liver. He told me l never seen and extra vein in, I've seen it in medical school but not in a human. Well that's not what you want to here from your doctor. But he also said I m not sure what's the best way to handle this but l will talk to my colleagues. Well he was definitely being honest . And it wasn't money it was wanting the best for his patients and trying to get the best outcome. That's how l feel about the doctors at the Mayo clinic doctors. Thank you John for all the support.

Jump to this post

Thank you Lisa. I appreciate your valuable insight. I have the same feeling towards Mayo Clinic doctors, nurses and staff. My personal experience is that they really use a team approach. For me it means I generally get a new family doctor every few years but I'm good with that because I know there is continuity in the medical records and they all use a patient's records for treatment. I have had to bring a few new doctors up to speed with my health issues but that is on me to make sure they know my symptoms and what I'm taking. The only frustration for me is filling out all the pre-appointment forms online and then getting another copy in the mail to fill out a week before the appointment.

Hoping you have a great day. John

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 3, 2017

Hi @sjudy,

I'd like to add my welcome, and thank you for sharing your story. I noticed that you've also posted in the Chronic Pain group about fibromyalgia, and since you mentioned some kind of small vessel disease (SVD) that blocks arterioles, may I ask whether it's a type of cerebral SVD?

REPLY
oldkarl | @oldkarl | Oct 3, 2017
In reply to @techi "Yes John all the diagnoses but 2 which are still being tested and consulting with the..." + (show)
@techi

Yes John all the diagnoses but 2 which are still being tested and consulting with the team of doctors which l think should be at all medical facilities. The medical employees who are caring for patients should be a team. I worked in a hospital where doctors aren't listening to nurses and other staff. Health problems are changing constantly and one of the doctors told me some of the meds l was taking was old meds and l guess they are not effective for illnesses today. And l also know everyone's body reacts differently but l have been on a couple of diuretics for years and when l tell the hospital here my general practice doctors and the specialized doctor for heart disease that my legs are swelling l just get another diuretic. Instead of finding why it's here take more drugs. So l was so blessed to get answers. I really don't know if the doctors changes your meds if you have your own doctor in another state. I hope when l give all the reports to my doctors they will take the advice and medical outcome from the Mayo clinic. One of the doctors at the Mayo Clinic said l don't know how you will get the previous diagnoses changed when you have a different outcome. So it's seems like a second opinion is only for your concerns and satisfaction because doctors or other medical employees don't want to admit they made a mistake. I see now when l was talking to people who come to the Mayo Clinic that they are getting the best care. So coming up soon this will be the 4th time coming to the Mayo Clinic but it's all worth it. And l am truly thankful to my internal medicine doctor who ordered all the doctors, test, and the team consulting with each other to give me the good news. The team at the Mayo Clinic reminds me of my retired gerentologist who told me about my liver. He told me l never seen and extra vein in, I've seen it in medical school but not in a human. Well that's not what you want to here from your doctor. But he also said I m not sure what's the best way to handle this but l will talk to my colleagues. Well he was definitely being honest . And it wasn't money it was wanting the best for his patients and trying to get the best outcome. That's how l feel about the doctors at the Mayo clinic doctors. Thank you John for all the support.

Jump to this post

@techi You said it, Lisa. One thing you must keep in mind. Many doctors spend their careers protecting the disease from the strongest efforts of the patient. I have been diagnosed, formally, with about 40 different diseases, and about 20 of these diseases failed the tests of time and lab. Of course, this fact alone is good evidence for one diagnosis, some form of Amyloidosis. And, of course, it also makes for a great source of career security for many doctors, etc. Even at Mayo,. although I had strong evidence of Amy, the protocols there demanded that I subject myself to 4 months of testing and poking and prodding before I could be diagnosed. They did find a few small things here and there, but in the end, they missed the diagnosis entirely, although they had "discovered" all the evidence they needed for the diagnosis. But, of course, that would have negated the job security things.

REPLY
peach414144 | @peach414144 | Oct 3, 2017
In reply to @techi "Yes John all the diagnoses but 2 which are still being tested and consulting with the..." + (show)
@techi

Yes John all the diagnoses but 2 which are still being tested and consulting with the team of doctors which l think should be at all medical facilities. The medical employees who are caring for patients should be a team. I worked in a hospital where doctors aren't listening to nurses and other staff. Health problems are changing constantly and one of the doctors told me some of the meds l was taking was old meds and l guess they are not effective for illnesses today. And l also know everyone's body reacts differently but l have been on a couple of diuretics for years and when l tell the hospital here my general practice doctors and the specialized doctor for heart disease that my legs are swelling l just get another diuretic. Instead of finding why it's here take more drugs. So l was so blessed to get answers. I really don't know if the doctors changes your meds if you have your own doctor in another state. I hope when l give all the reports to my doctors they will take the advice and medical outcome from the Mayo clinic. One of the doctors at the Mayo Clinic said l don't know how you will get the previous diagnoses changed when you have a different outcome. So it's seems like a second opinion is only for your concerns and satisfaction because doctors or other medical employees don't want to admit they made a mistake. I see now when l was talking to people who come to the Mayo Clinic that they are getting the best care. So coming up soon this will be the 4th time coming to the Mayo Clinic but it's all worth it. And l am truly thankful to my internal medicine doctor who ordered all the doctors, test, and the team consulting with each other to give me the good news. The team at the Mayo Clinic reminds me of my retired gerentologist who told me about my liver. He told me l never seen and extra vein in, I've seen it in medical school but not in a human. Well that's not what you want to here from your doctor. But he also said I m not sure what's the best way to handle this but l will talk to my colleagues. Well he was definitely being honest . And it wasn't money it was wanting the best for his patients and trying to get the best outcome. That's how l feel about the doctors at the Mayo clinic doctors. Thank you John for all the support.

Jump to this post

@dear oldkarl, peach here. just read this post of yours re: diagnosing. why, why with all our progress it seems as if the medical field is going backwards. perhaps it is a form of protection for the doctors as not to be sued in case of a wrong diagnosis? in any case, where is the progress? if so, why don;t they reveal such to the public or do i not read the proper paperwork? i am sorry for all of us suffering peoples hanging in there waiting for a revelation. a hug to all.

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