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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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@johnbishop Happy New Year John. I haven't written in awhile. I had just got out the hospital on the 27th. I was admitted in the hospital and my diagnosis was Acute depression and manic psychosis but l had seen a new neurologist and he didn't say anything was wrong. He didn't even order a eeg or MRI. I was having problems because I was out of xifaxan and l had already seen the doctor at the mayo clinic. He told me to try the xifaxan one more time. I did and everything was fine so l asked him for a refill. I went to my previous doctor that does my colonoscopy and his nurse practitioner ordered an acute hepatitis panel because they had on my chart l had hepatitis c, cirrhosis of the liver and then Autoimmune disease. The panel came back and l dont have hep c and cirrhosis. So as the doctor said l have hepatic encephalopathy. So instead of them just seeing it was my liver and l needed my xifaxan they admitted me to the psych ward. I was just looking on autoimmune encephalitis alliance and they were talking about new research John Hopkins was doing and it has to do with PET test and AE. It was a 10yr study. And l had my PET test done at the mayo clinic but l don't know if they are in the study also. But l will call this week coming up. So now l wasn't going to do nothing but now l must because there are too many people in my state who are in the mental hospital for no reason at all but more testing and doctors who want to help there patients. But otherwise everything is great. God is with me all the time so as it says in psalms 23. Thou l walk in the shadow of death thou art with me. And yes he is all the time.
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1 ReactionHi Lisa @techi, Happy New Year to you also. It's good to hear from you and I'm really glad things are going better for you. It would be interesting to find out if Mayo Clinic is also participating in the new research study you mentioned.
Have you seen a motion disorder neurologist? I have white matter diease, but also Dystonia, the genetic version so it's a neurodegenerative brain disease. I get quarterly Botox and take NSAIDS and strong muscle relaxers.
Hello @cjhmayo3, Welcome to Mayo Clinic Connect. Thank you posting and sharing your diagnosis and treatment. There is also another discussion on Connect that you may be interested in reading through and learning what others have shared about their experience with Dystonia.
Anyone dealing with Dystonia?: https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/
May I ask which symptom causes you the most problems?
Please include me on any information for Leukeoncephalopathy or encephalopathy, and white matter disease. Many thanks. GHH
Thank you for sharing your physical difficulties. Reading them made me feel humble to my own illnesses. But I could relate to some of your symptoms. I actually have quite a few but B/P is one of them. I am not your typical B/P patient. 2 heart issues, 1 adenoma on my Pituitary, 2 in my liver, but everything is moving at a snail pace for medical help. What I was really wanted to say is, You are absolutely right about the power of living with an all loving God 🙂
@darkarta, Thank you for the private message. You asked to be connected with other members with arteriolosclerosis in the brain also know as white matter disease, so I thought it would be best to respond to your private message in this discussion Brain injury white matter, encephalopathy, and encephalitis so that you could connect with @ghh, @cjhmayo3, @techi and other members who have posted about white matter disease.
You may also find the following information helpful:
-- What to know about white matter disease: https://www.medicalnewstoday.com/articles/white-matter-disease
Well this arteriosclerosis of the brain and not the other conditions you are mentionning
@darkarta - Sorry, I did a search of Connect and there was no one else discussing arteriosclerosis of the brain. You mentioned in your post that it is also known as white matter disease which is why I responded in this discussion where other members have mentioned white matter disease.
I don't know if this is helpful or not but here is some information I found on arteriosclerosis of the brain:
-- Cardiovascular disease and brain health: Focus on white matter hyperintensities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6016077/
-- Cerebral Arteriosclerosis Information Page: https://www.ninds.nih.gov/Disorders/All-Disorders/Cerebral-Arteriosclerosis-Information-Page
-- Cerebral white matter lesions and atherosclerosis in the Rotterdam Study: https://pubmed.ncbi.nlm.nih.gov/8098390/
Not sure if this older discussion may be relevant but thought it may be an option since it has recent posts.
-- Cerebral Small Vessel Disease: https://connect.mayoclinic.org/discussion/i-have-vascular-small-vessel-disease-that-so-far-just-has-caused/
Ok thanks John I'll check it all out
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