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Lisa
@techi

Posts: 303
Joined: Jun 18, 2017

Brain injury white matter, encephalopathy, and encephalitis

Posted by @techi, Jun 18, 2017

I was told i had white matter in my brain. My previous neurologist was saying i had conversion disorder, depression, anxiety and the list goes on. I just went tl the mayo clinic and the doctors was suprised at what ive been through and how i still handling it. I told them it was just the grace of God. They are still trying to find out things because now my ana is high and they are trying to find out why. The cardiologist l went through in the past told me l had an enlarged heart and angina. The cardiologist at the mayo clinic said you don’t have heart disease only uncontrolled high blood pressure and its controlled now. Praise God. But I’m still falling and sometimes when l try to go to the bathroom or kitchen maybe enven feed the dog l cant. This Saturday l was talking to my daughter and we were laughing over the phone. I tried to get up and send the dog out and l couldnt. My husband put the wheelchair and my walker in the room. My lifeline was charging so l didnt have that on. I tried to get to the walker and i did but l couldnt get the wheelchair so l had to get down and slide to the wheelchair. I didn’t know how l would get up because both brakes weren’t on. I did get the other one on. I was trained in my clinical as a occupational therapy asst. about safety. I got in the wheelchair and i was able to get the dog out. Now this was a little hard because my hands was shaking. I know God was with me. I then had to get back in the room to sleep some of this off. I could only get the wheelchair up to a certain point in my beadroom and i knew i had to get in bed so l tried to pick myself up on the edge but l couldn”t so l knew if l went to the side maybe this will work. At first l tried the first time and l slide back and hit my head and my back was hurting. Now l can take anything for pain because l’m allergic to so many medicines. And it could be cause of my liver. So l tried a second time and it worked. I just had to praise God. I went to sleep for a few hours and then l was able to get up and walk. They said l have white matter in my brain and ceberal ischemia. I was also diagnosed with MS and Parkinson disease. I shouldn’t be able to write, read, and even think but it onlybthe Lord l’m still alive. And now he’s goven me titles to 2 books and l’m getting ready to go back to school to become a speech therapist assistant. When one door is shut God will open another if you just trust him. And through these trials l have so many learning about different types of illness and how you just have to hold you head up high because you can get through your difficulties no matter what they are. And l wouldn’t trade anything l been through because it gives me so much trust in God because he will only see me through.

REPLY

Hello Lisa! Welcome to Mayo Clinic Connect. We are glad you are here. You have found a good place to connect with other people and share medical experiences, thoughts and support others. I’m sorry to hear about the difficulties you have been having.

I would like to connect you with some of our members on connect discussing MS-@anisha1232 @ricksraleigh @chefbrown @tlgreg60 @rockypoint67 @sebley12 @manysilver @jessejames4534 @carolyns and @lal2. Also, please click this link http://mayocl.in/2rLGEjZ and make sure to introduce your self to the group.

I would also like to connect you with the Parkinsons group. Please follow this link to the Parkinsons group http://mayocl.in/2sIDHpA.

Lisa, it sounds like you have a pretty good support system in place, that’s great! I look forward to hearing more about you.

@techi Hello Lisa – let me add my welcome to Mayo Connect! I read your post 2 times because I wanted to be sure I didn’t miss anything. You are certainly taking charge of your life – I really admire that. As the mentor of the Parkinson’s group I would certainly like to invite you to join our discussions. If you go to the link that Jamie provided above you will meet some really great people. I look forward to having you in our group! I’m particularly interested in your dual diagnoses of MS and PD. If you are comfortable sharing with us more, please let us know how both diagnoses came about. What type of tests led to those diagnoses and do you take medications for both problems? Teresa

@hopeful33250

@techi Hello Lisa – let me add my welcome to Mayo Connect! I read your post 2 times because I wanted to be sure I didn’t miss anything. You are certainly taking charge of your life – I really admire that. As the mentor of the Parkinson’s group I would certainly like to invite you to join our discussions. If you go to the link that Jamie provided above you will meet some really great people. I look forward to having you in our group! I’m particularly interested in your dual diagnoses of MS and PD. If you are comfortable sharing with us more, please let us know how both diagnoses came about. What type of tests led to those diagnoses and do you take medications for both problems? Teresa

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Theresa i was doing some resaerch because i have had some many diagnoses i sometimes dont know what i have. The doctors told me l have autoimmune encephalities or encephophaly but they really not sure. I had extra veins in my liver, which i never had anything wrong with my liver before in my life. My ana is very high and some test are high and some are low. When l was reading about autoimmune encephalopathy and liver disease and the tips l had. They talk about the symptoms l am having right now. I have been asked if l wanted a blood transfusion and if l have a living will. I was given a muscle relaxer and l read l had.cardiac arrest. So l am blessed to still be alive. I am allergic to so many meds and have so many allergies. When l have pain my husband trys to tell me to take pain meds but l wont because l am afraid that something will happen.So when you are told by a neurologist that you have conversion disorder or you go to the hospital because you fell and they said you were halluciating and the psychiatrs comes and want to know if you want to kill yourself and you are thinking why is she saying that, well l would say they are trying to keep something from you. I believe you should know whats going on and also what the doctor is looking for so you can know how you can help yourself. When l asked my pervious gastro doctor he retired. How long will l be taking my meds he said the rest of my life. Will l couldnt believe that but as l was reading some people can stop using the meds after 3yrs of surgery or some for life. And if you have to have a transplant your life expencenty is not long but l just trust the Lord that he will bring me out. And maybe it nothing to worry about. I will find out more when l go back to the mayo clinic in july. So l was asking others what they were going through and what they had to do to improve their health.

Hi Lisa,
Yes I believe (as anyone of us might be a patient for any reason) that you should know what is going on and what the doctor is looking for!
From my point of view the patient first priority is to know why the doctor asks the patient that or this, and how much the situation is sever in order to become the over- whelmed case which make the patient handle all the questions in short time, which makes the patient feels more pain and might lead to commit a suicide or a homicide if not getting aid on the serious time.
When patient having pain, first choice is to keep a friend beside her/him in order to keep self- neutral and that friend could be your primary doctor. Doctors’ first step is to build trust and good relationship with their patients and to make them feel comfortable and interacting positively which make it easy for them following their treatments. I read your words, and it encourage me to say that many negative issues can be immerged from our Hallucination and are not real especially when we feel pain. So I believe the main step when building good relationship and trust with our doctors is to ask our doctors about the reality of what we have heard and what we have seen, and that the beginning of a successful treatment results. Dear Lisa wish you a wonderful, stable, and successful life with your family!

@1000016352

Hi Lisa,
Yes I believe (as anyone of us might be a patient for any reason) that you should know what is going on and what the doctor is looking for!
From my point of view the patient first priority is to know why the doctor asks the patient that or this, and how much the situation is sever in order to become the over- whelmed case which make the patient handle all the questions in short time, which makes the patient feels more pain and might lead to commit a suicide or a homicide if not getting aid on the serious time.
When patient having pain, first choice is to keep a friend beside her/him in order to keep self- neutral and that friend could be your primary doctor. Doctors’ first step is to build trust and good relationship with their patients and to make them feel comfortable and interacting positively which make it easy for them following their treatments. I read your words, and it encourage me to say that many negative issues can be immerged from our Hallucination and are not real especially when we feel pain. So I believe the main step when building good relationship and trust with our doctors is to ask our doctors about the reality of what we have heard and what we have seen, and that the beginning of a successful treatment results. Dear Lisa wish you a wonderful, stable, and successful life with your family!

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I really dont know what test they were. I just was diagnosed by one neurologist who said parkinson disease and carpal tunnel and then when i was admitted to the hospital.and when i was unconscious they said ms, encephalpathy and so on
I like the mayo clinic and Rochester, MN we are going to look for houses there. Im also trying to get back in school online. My goal is to help otbers. I read online about a doctor at john hopkins who went to the hospital with head pain. They sent him back home and he died of a stroke. I was surprised a dr would misdiagnosis another doctors family member like that but i will finely know the trueth when k go back. My general practice doctor said he doesnt run ammonia test. He must think im stupid. I worked in a hospital for 7yrs and your intial test will tell you if their is any other test to run. He was covering up. Then he says i have cirrhous and when i told my gastroentrologist said no he chaged to portal.vein. i was just reading my chart and my ammonia level has been high since 2016 and i was told twice it was normal. So praise God im getting professional health. This State is the worst health care we range #2 in the country. Im blessed and highly favored because i have people, family , childtren grand and the best husband who cares. My thigh are swelling i was eearing a size 14 now 18. I have been throwing up once and i have no energy. Today i went to lunch with a friend and learned about tiling walls
I like diy projects. And i try to keep busy and talk to my neighbors and the kids around
I read because before i couldnt read, write, or even drive but now God has blessed me and i will start writing my books not one but two. God has given me insight on what to write. I going to be remodeling my house and find a couple people with disabilites learn to get ready for working especially to own their own business. Because usually people who are disabled get ingnored about how to become successful. I went to school and graduated as an occupational therapy assistant and never got to practice and now im going back to school hopefully for speech therapy because ive been don that path. So i call myself an advocate for those tbat dont have a voice or dont know how to get support or resources to help them get around or do excerise when they are home bound so i will be talking to goverments, states, owners of business, health medical services and anyone else i can think of because know so many people are in some kind of crisies and we have to learn how to give and you will teceive.

Has anybody have swollen glands with immune enephalopathy. Last night i couldnt swollow so l had to use an epipen. The doctor checked my thyroid and said everything is ok but i have to get a spinal tap so i dlont know what it is but l’m so thankful until God that the mayo clinic is doing something. My case is something unusal.

Hi @techi,

I moved your message to this discussion in the Brain & Nervous System group so that you can connect with others talking about autoimmune encephalitis. Although, they may not have the same condition, @akhippiechic @kdubois @bettyann @travelgirl have posted about swollen lymph nodes, and they may be able to offer some insight.

I just read some more on my mayo clinic messages and now they said it could be autoimmune dementia. I looked up the symptoms but its hard to figure out. Thekr are so many autoimmune symptoms thats are so simular but at least the mayo clinic is trying to figure out whats going on. They were saying that sometimes neurologist will say assume its something else. Like so many things that was said to me. So l truly that God for leading me to the mayo clinic because l did some research with John Hopkins about encephalitis and the doctor and professor was talking about misdiagnosis because his father came to the er with a headache. He was sent home and his father died of a stroke. So this doctor opened up the first encephalitis clinic in the country. So l thought that was something, that a doctor also see’s about misdiagnosis and carelessness. He also stated that the medical care has been the highest since patients are misdiagnosed and disability has risen. So l can’t wait to find out what happens and with the spinal tap and cognitive written test they should be able to tell me something. This can put a toll on someones life but l just have to remember the Lord said fear not l am with you.

Liked by nancywootten

Hi @techi, are you on a lot of medications? I used to experience a lot of submental gland swelling (the gland under the chin), back-of-the-tongue swelling, constant swollen glands, and I also had swollen lymph nodes in my armpits for years. Mayo discovered that the cause was that, for years, I had been taking a lot of medications that I don’t properly metabolize due to genetic issues. Once I ceased these meds, these all disappeared.

With that said, during all of this time of of being incredibly sick from meds (12 years), I was also taking a medication that caused me to have symptoms of two autoimmune conditions: drug-induced lupus and Sjogrens syndrome. The symptoms disappeared 100 percent once I ceased the drug.

Thank you for that answer. I always knew it was all the meds i was given that was and still is causing my problems. And l am having so many allergic reaction to the medicine. I have on that they are suing the manufacture. I was also told by my health plan pharmacy i shouldn’t take, they sent letters to me and both of my doctors and my cardiologist said that’s was old news it alright. I asked my local pharmacist and they said no you shouldn’t take them together. So l will definitely see how l can get off the meds. I know l will be 100%better. All these meds effect your memory and the state l live the doctors are being charged and license suspended because of inappropiately prescribing meds to patients.

@techi

Thank you for that answer. I always knew it was all the meds i was given that was and still is causing my problems. And l am having so many allergic reaction to the medicine. I have on that they are suing the manufacture. I was also told by my health plan pharmacy i shouldn’t take, they sent letters to me and both of my doctors and my cardiologist said that’s was old news it alright. I asked my local pharmacist and they said no you shouldn’t take them together. So l will definitely see how l can get off the meds. I know l will be 100%better. All these meds effect your memory and the state l live the doctors are being charged and license suspended because of inappropiately prescribing meds to patients.

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Yeah, looking back, I innately knew I had medication problems. Things like not getting any relief or loopy symptoms from prescription pain meds, gaining weight very quickly when starting PPIs, etc. On multiple occasions, I remember telling multiple doctors that I felt like I was “full of medication.” And we came to learn that I was correct.

Meds very much affected my brain and caused significant brain fog. I started detoxing from these meds in January 2016, and today I am still detoxing, and every few months I still realize that some of my memory abilities come back (despite some brain damage).

If you have always had a hard time with meds, including not bed but atypical reactions, you may want to consider the testing I had. Its called pharmacogemic testing. I’ve had two sets of tests done. The first was onsite at Mayo Clinic, and the second set was done via mail order by a Mayo company named OneOme. They have a kit that’s very reasonably priced ($249 including shipping for 22 gene tests). You have to live in a state that has certified OneOme or have a doctor in a state that has certified them order the test for you. There are other companies that do them too, but I stuck with OneOme to ensure that I still had Mayo quality.

Many doctors, I’d even say most, are have such rudimentary knowledge of the liver enzyme system that metabolizes most of the body’s meds (called cytochrome P450), that they don’t realize that even people who are polymorphism-free can experience significant drug-drug interactions because so many drugs inhibit and induce these enzymes to work more slowly or quickly than intended. When I first started coming to Mayo, my home medical center had me on 12 medications. Once I learned about the P450 system and how all of these enzymes and meds work, I was stunned that none of my doctors knew what was going on because when you are taking that many meds, you are basically always having drug-drug interactions. Last May, I met with my Mayo Allergy/Immunology doctor as he’s the doctor I work with most on this stuff, and I told him that now that I’m educated about this stuff, I am stunned that none of my 20 doctors at home had a clue what was going on with me because they should all have know what was going long with me. He told me that I was absolutely correct and that he had no clue how that with taking 12 meds how that many doctors didn’t suspect this either. (This is actually what medication TV ads are talking about when they reference grapefruit juice, but there are actually more foods that cause these interactions and a TON of meds.) It all just stuns me.

@techi

Thank you for that answer. I always knew it was all the meds i was given that was and still is causing my problems. And l am having so many allergic reaction to the medicine. I have on that they are suing the manufacture. I was also told by my health plan pharmacy i shouldn’t take, they sent letters to me and both of my doctors and my cardiologist said that’s was old news it alright. I asked my local pharmacist and they said no you shouldn’t take them together. So l will definitely see how l can get off the meds. I know l will be 100%better. All these meds effect your memory and the state l live the doctors are being charged and license suspended because of inappropiately prescribing meds to patients.

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Thank you. Since being on these meds they are now talking about how it effects your liver. After my brain injury i was sent to a psychiatrist. She had me on antidepressants for years and the only reason l was depressed is because l was let go because of my disability. Which is against ada laws and l just moved in a house we were buying and we had 5 small children. But praise God we didn’t lose our house and all the children are grown and have children of their own. So she kept giving me drugs and then she kept increasing the dose. I ended up with taking about 10 medications a day. Now l was in the hospital again because of constant falling. I had to have 4 surgeries and now l have so many different diagnoses that they can’t even explain. I been told for years l had heart disease and when l went to the mayo clinic Dr Miller said you only have uncontrolled high blood pressure. Praise God for him. Then its always your depressed and you have anxiety instead its the meds you were prescribed. Now our state is retraining doctors about pain meds. After so many people are messed up. I had to have 5 shunts on my extra veins in my liver. When l asked my cardiologist about my liver he said it was the meds. I was in rehab and they gave me a muscle relaxer and l was allergic to it and l went into cardiac arrest. But God kept me. So l turned all over to him. And l so blessed to be able to help others. I am getting ready to write my book and my church asked me to do it too. Also they want me to give my testimony because it seems like everyone knows what l’ve been through so if l can be a blessing to someone elss then it was all worth the journey.

@techi

Thank you for that answer. I always knew it was all the meds i was given that was and still is causing my problems. And l am having so many allergic reaction to the medicine. I have on that they are suing the manufacture. I was also told by my health plan pharmacy i shouldn’t take, they sent letters to me and both of my doctors and my cardiologist said that’s was old news it alright. I asked my local pharmacist and they said no you shouldn’t take them together. So l will definitely see how l can get off the meds. I know l will be 100%better. All these meds effect your memory and the state l live the doctors are being charged and license suspended because of inappropiately prescribing meds to patients.

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Yes, @techi, my liver was significantly, negatively-affected by P450 drugs and especially PPIs. To prep for my Nissen last October, I had to go back on a PPI for six weeks to heal my esophagus. I hated it, but I knew it was necessary even though I got sicker and sicker and sicker all over again, and my liver enlarged and caused a ton of pain all over again. Interestingly, my Nissen only required my surgeon to work with my esophagus, diaphragm, and stomach, but the first thing he had to do when he got in there was to cauterize my bleeding liver. He also said it was enlarged, “floppy”, and in the wrong location. All of this didn’t surprise me at all; I had been complaining to my my home doctors for years that my liver hurt and was enlarged. I also believe that PPIs are the cause of my liver’s hemangiomas.

My anxiety is much better now that I am not taking these meds. And I kept telling them that I was a little sad because I was sick all of the time, but that I wasn’t depressed. I just wanted to feel better.

I am also planning to author a book about this experience… misdiagnosis, a brain surgery that was never needed, brain damage from the surgery I never needed, and five undiagnosed conditions by my home doctors. Thank god for Mayo Clinic.

I agree… helping others give purpose and meaning to what we have been through. And I don’t want to see anyone else go through what I went through. This was entirely preventable.

When you talked about a book on misdiagnosed it reminded me of the John Hopkins encephalitis clinic. A professor and also medical doctor his father was complaining about his head hurting. So he took is father to the hospital and they ran all these test and they told him everything was normal. So the son (per doctor) took his father home and the father went to bed. The son came back to check on him and found him dead. So the son opened an encephalitis clinic the first in the US at John Hopkins for patients and also they are training doctors about misdiagnosising. The professor/ doctor said that healthcare is spending billions of dollars because of misdiagnoses which has cost patients and their families unnessauary hardship, grief and even death. When l was having my issues in the hospital because they didn’t know how to treat me they wanted to put me in a nursing home. They told my daughter if l didn’t get better the next morning they would have me transferred. I just thank God for grace. My daughter said mom you got better that morning. And l started to think you know how many people are in nursing homes, mental hospital, prision and etc. Just because of misdiagnoses. My mother is in a nursing home and she has dementia and for 4months they didn’t give her dementia medicine and she can’t talk to you and make some sense in the conversation. I had a neighbor next door to me who was on antidepressants and they had just changed his meds. My husband and l just came home from vacation. He was smoking in his garage as always, he asked us how was our vacation. We talked to him about it. Then the next day he was tazzed by the police because he had a reaction to the meds and was beating his wife. Now this a man that wasn’t abussive to his wife. It was the medication and he had to lose his life. And instead of monitoring the drugs he was given and it probably had an ingrediant he had on his allergy list. I have given my general practice doctor of all the meds l am allergic to in writing and i also go on the website. One day when l went to the office with my list because they kept prescribing meds with acedeminophine with it and l am allergic too. His nurse assist said l don’t have all these allergies on my list. I told her l bring them to the office and also update my allergy list online with notes. She told me well l will update that now. So if something would have happened anywhere it could have been unfortuant for me and my family. And no one would have admitted they were at fault. I found out about my liver in 2014. I had my procedure done in 2015. My doctor was told and he never had anything about me having liver disease on my chart. When he was told about my liver disease by my gastroenterologist he put on his records i was diagnosed in 2011. Seems kind of suspicious you say you knew something but you never told the patient or proceed further to not entail any other danger to the patient. Then my gasterentologist said you don’t have cirrhosis of the liver but symptoms. When you look on your records on your general practice records it says cirrhosis. So you have to call there office and tell them and they change it but you have anxiety. And this is happening everyday. We need to clean house and get rid of healthcare workers who just want a paycheck so l am so glad they are doing something in oklahoma finally. So l don’t want to dwell on my fustration l just want to help others to understand its not in your mind. If you feel its not right move on because it is your life and it will affect you and your family. I am so glad we can share our experiences, concerns and questions with one another. I listen to Joel Osteen and Joseph Prince and they talk about faith, grace and destiny. And l know l going to get a good report when l finish with all these test. Because my destiny is to be a help to others with disabilities that’s why l went to school and l even had doctors wanting me to work for them when l had my brain injury, l couldn’t understand why? But that was God showing me l can put the knowledge, memory, love, joy and anything you can imagine if you just ask and trust me. So l know we are both going to have bestsellers and our books will help others.

Has anyone been diagnosed with having white matter in the brain after a brain injury? And do you have sometimes have symptoms of a stroke? I was told l have white matter in the brain and sometimes have symptoms of a stroke. And then it could be my ammonia levels. And one time l was diagnosed as having ms which wss ruled out.

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