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Posts (344)

Wed, Jul 22 10:57am · Digestive Issue: Gut dysfunction following traumatic brain injury in Digestive Health

@iamcherylb Cheryl l highly recommend the Mayo clinic for a second opinion. i had a TBI in 1997 and had memory issues and also was put on a lot of harmful medications because where l live they didn't know to much about viral encephalitis. Then in 2017 the Lord Gave me my memory back but than l had liver problems. So l came to the Mayo clinic in 2017-2019. And l tell everyone if you want a second opinion that's the place to go. And no l not getting paid by them to say that. And now after not working for 23yrs l am now working at a hospital and also taking care of my grandson. So don't ever give up.

Thu, Feb 20 8:09pm · Undiagnosed, numbness, tingling, Muscle weakness and more in Brain & Nervous System

I don’t know if some of you watch Brain on fire last night abot a news reporter suzaahn Calah. I know l probably spelling her name wrong. But it was such a familiar incounter. It was like l was looking in a mirror seeing myself an how her jounary and mines was just alike. How she talked about fear, and knowing something is wrong but no one can see at first but only her family knew she wasn’t making it up. I brought the book and as l was reading about the numbness on her left side and how they thought it was a stroke. I said wow that was the same thing and l still feel that numbness. And how she would cry. That also was the same. I would cry in church, l would cry at night and still do. I was never one to cry. I thought l was very weird not to have emotions even when my father died. And when she talked about being unsteady and falling. Same here. And then she spoke about feeling like she was out of her body. Nailed it. Now l go sometimes in the grocery store and l just can’t understand where l am. People look so far away from me. It like out of body out of mine. Well that sounds psychotiac and l thought that too. When she went to the psychiatrist and the neurologist and all the test and the notes were all the same. And l know they do that because they have to find out how to diagnosis you and what test to run. But even down to the medicines she was taking, l am taking the same except the antidepressant which l am no longer on. And she spoke about when she was being tested she saw three psychiatrist. Well join the club l will see my third one when l go back to the Mayo clinic. And l will also be seeing my third psychiatrist. Before l watched the program l faxed my general practice doctor because he never believed me. I was told by everyone to fire him but l don’t know why God is saying to do that. Maybe its to educate him and also all the doctors that didn’t believe me. She said sometimes everything was fine and the next time it started all over again. I told all my dearest friends at church to watch it because l know they saw the difference in me when wasn’t aware of it myself. So when l go back to the Mayo clinic l am waiting to see what’s next because the neurologist already said if everything comes back normal you would have to deal with it. I thought that was strange l never heard anyone say that. And if your not a neurologist who specializes in that area of medicine you will never pickup the signs or know what to do. Very interesting that God pit the answer right there that l knew all the time l was misdiagnosed and not being heard. So awesome!!!

Tue, Feb 11 11:00am · SLEEP STUDY-SLEEP APNEA in Digestive Health

@johnbishop Hey John no l haven't got my results back. It was a full body study because they still having problems with autoimmune diseases and liver disease out here. But she very thoro. I also had a cpac last year and yes they are very difficult so they are going to change my machine. So since she didn't do the first study she wants to see if l really need it. I mean if my sleep issues is my liver, medication that the doctors are prescribing that l shouldn't take with an Autoimmune encephalitis or sometimes hepatic encephalopathy. So l seen a neurologist, and rheumatologist and both say it's my liver. And so l had to fire my last hepatologist l was so happy about before because when my levels went up he said there was nothing wrong with me. Then later wrote on my chart about cirrhosis and hepatitis c which were both ruled out by 2 doctors. One my mayo doctor. And l can't take bystolic and high blood pressure meds. So after the psychiatrist put me on lamictal for mood swings and depression. The FDA put out warning about taking that in April of 2018. So l going to show my doctor tomorrow. And my insurance put out warning of meds l shouldn't be taking so l.have to bring it to there attention. You get so tired so l told my husband l ready to move. I just tired of doctors who only think about prescribing medication for profit and not listening. I have been dealing with this crap for 21yrs and l know better than that and more than that. But l hope you are doing well. I spiritually and l know God has blessed me and l just go around helping people eat better and educate themselves. And l also was watching a doctor on TBN Dr. Leis and she talks about the immune system and the mind, body and soul. And she said you have to retrain your mind and your body and lots of people have been healed of there sickness. And l am eating differently and l am sleeping better and walking. So it might take a little moment and then again it might not but l have to ask God to completely heal me and help others see he can do it for them too. I am going to call the mayo clinic because l don't know if the doctors ever go to John Hopkins because l got a text from John Hopkins and they are teaming together for AE diseases. If not then l will be making an appointment to go before summer because l need to see my doctor. God bless you John and take care. I will let you know the result still waiting for my brain eeg but he's filling out my dps papers so l can still drive. Hallelujah

Tue, Feb 11 11:00am · SLEEP STUDY-SLEEP APNEA in Digestive Health

Last night l had to go for a sleep study. I had just had an eeg a week ago. And l told the tech l hope they see l just need a new cpac machine. Well my doctor comes from Turkey very sweet doctor. I trusted her and we bonded the first time l met her. I know she felt a little intimidated coming to a new country leaving her family behind because l moved from another state. So we got along very well. She’s very thorough and she concerned about her patients. Her reviews are between 4.5 -5 . Now l know everyone one has different reviews positive and negative. But when l go to the doctors l pray first and ask God to show me about them. And when l talk them l can see or feel something. That the Holy Spirit and God shows me if they are right for me or not. Now sometimes it might take a second visit because doctors have issues too but l will know. And that is also with medications and know when you are sick even though they may not God always has the answer. So l was hooked up and she order the test like an internal medicine doctor. The tech said she well let you know about your entire body how it’s running. I never had a sleep study like this before and l had lots of test. And at many hospitals, l really feel like l am the states Ginny pig. But like l say if l can help somebody as l travel along then my living will not be in vain. We should all have that kind of attitude even when we are wrong. Wouldn’t that make a difference that’s why l enjoyed the Mayo clinic because you see a difference. Not all doctors has the same desire for the patient but as a team you can always weed out some and still get a fantastic results. Now my family wants me to go to John Hopkins but l tell them l have a doctor at the mayo clinic. I wonder if he ever goes there since they are now working together with Autoimmune diseases? And now the support group are getting together. Well l am believing a good report because I already been through the battle and now the battle is won. When we were driving home l was listening to Fred Hammond Lovely Day and that ot certainly was. Have a Blessed Sunday and enjoy the Superbowl!!!

Dec 3, 2019 · Autoimmune Hepatitis & CBD in Autoimmune Diseases

@jromanmi l have the same AE an HE l had people tell me about cbd matter of fact my accountant at the time was selling it. But l wasn't going to try anything l wasn't informed about. Then twice l was watching Dr. Oz and they went out to cbd shops and found out 75% don't even have the ingredients listed and also THRis in some on them. And of course non is FDA approved. And l not sure of FDA approval either because of all the opiods and recall meds. Just last week l got a letter about recalled zantac and we heard that in the news months ago. And l just getting the letter last week. Have you tried any probiotics? And also have your vitamin D levels checked for some reason lots of people are low in vitamin D. GOD BLESS.

Dec 1, 2019 · Autoimmune rash in Autoimmune Diseases

@killme1980 Yes last month l had a rash and itching l went to my internist and she didn't know what it was. l was concerned because l thought it was shingles. Since l had it when l first got married in 1978 but it was under my eyes. So my doctor wanted to send me to the dermatologist. And the rash was all around my neck, arms, back, legs. I had my own dermatologist so when l went to her by than it was healing so it could have been a medication or something going on in the hospital because l was a patient in the ER for a couple a day until a bed came open. But she recommended an over the counter lotion because with autoimmune disease you seem to be highly allergic to things. Good Luck and God bless

Nov 13, 2019 · Autoimmune encephalopathy anyone? in Autoimmune Diseases

@tanpa1 l was also diagnosed with HE and AE. And where l live they don't know the symptoms. Since 1997 when l was diagnosed with viral encephalitis l have been put in a psych ward 5 times because of confusion. The first time l was put in l did want to commit suicide because l had 5 children my oldest just graduated from H.S. And we had just moved to a new house, l had a new job and l just purchased a new car. The first new car l had ever brought myself. And now l was faced with a brain injury. And so l than l began praying and l feared God more than man. And l knew if l wanted to go to heaven l better get it together..So l prayed the Lord would take that thinking away from me. And l never thought about suicide again. But the doctors don't understand that you will get confused, and your ammonia levels fluctuate. And it also could be dehydration, your diet and yes it can sometimes be stress. And l have had alot of stress that my family was putting on me because my sister has dementia. And her family isn't taking care of her. And her children wants my family to do the work while they spend her money. Then l had two deaths last year. My mother passed and my nephew. But l wasn't stressed about that because my mother out lived all our family members prior. She was 95yrs old. I miss her but l know if l live right l will see her again. And everything was taken away l.lost my job because of my disability which l now know thatcshiuld have happened. But l went back to school and got my associate's degree. And this year l am starting my business and l will be returning back to school. So living with a major illness is hard but it can also be a blessing. Because you see things differently. And you Thank God for every obstacle you go through and l pray that l can help someone else and have compassion for others. Because some people may have a different turnout. So l just pray for others. And l pray that all doctors will be able to learn the symptoms of this illness so everyone gets a chance to have a full recovery. And last Saturday l was just released again from the physic ward. And they doctor has mistaken my identity with another patient with the same name. And while l was in the physic ward l saw the other patient with my name. And she was angry, throwing things , cursing and l was singing Father Abraham and Joyful, Joyful and quoting scripture. So l would say l was healed and the hospital, doctors made a mistake. So l have to get this straighten out with my insurance, medical records and so forth. Now that's what l call stressful. I worked in a hospital for 9yrs so l know protocol. And l take lactulose and rifaximin. And l will be going to the mayo clinic in December because my rheumatologist told me that the doctors here are not trained to help me here. I have to go back to the mayo clinic for my AE. So l Thank God we still have doctors who care. And l had emergency heart ablation surgery. And l haven't had any falls for 6months. And l am walking faster than before. My husband tells me to slow down. Praying for you.

Nov 12, 2019 · Autoimmune encephalopathy anyone? in Autoimmune Diseases

This past week l was admitted to the psych ward and l know it was because of my confusions. But the doctors here are missing everything. They said l have dementia but they didn't do a PET test and l had that done at the mayo clinic in 2017 and it was normal. And my memory has only gotten better. I remember going through a test and the doctor was so surprised of my memory he through the test paper in the air. In the room l was being tested in. I know my state is trying to say they found the treatment to AE and HE but they didn't only God has and he has guided me where to seek help at the Mayo clinic. And l could have went to another place but he guided me to Rochester Minnesota. And yes l have a good team here but that was only for my heart. But as far as AE and HE, Oklahoma is at the bottom for knowing how to treat this illness. I just so blessed l will be returning to the mayo clinic next month. But to be diagnosed with dementia and not having a PET is really just a guess and not for the guessing business. If you don't know it don't say it. And also put negative diagnoses on clients charts because it confuses everybody. But l was in the psych ward for 8 days giving God all the Praise. Singing and quoating scriptures and that use to be a problem but when Jesus is in your heart fear goes away. And everyone see what God is doing in your life. I am praying for everyone who is going through this because it not a party it's a struggle but Thank God he frees us of all FEAR. And we are more than a Conqueror.