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Brain injury white matter, encephalopathy, and encephalitis
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.
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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.
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2 Reactions@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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2 ReactionsTheresa 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.
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2 ReactionsHi 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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3 ReactionsI 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.
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4 ReactionsHas 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.
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2 ReactionsHi @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.
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1 ReactionHi @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.
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