Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
Has any physician considered normal pressure hydrocephalus in your case? I have a sense that the condition is under diagnosed.
@jeancary l am sorry l didnt get back. My ammonia levels have been elevated and now my lactulose has been increased. But after had my second bout with encephalitis, my ammonia levs were high when l was in the hospital and my diagnosis with encephalopathy was due to medication l have been taken for years. I really don't know if it was the antidepressant or NSAIDs. When l saw my new gastroenterologist he said it was from my meds. So l was taken off a lot of meds. My neurologist at that time said l had white matter in my brain so l really don't know if it was from the shunts or not. But l can say after some serious praying my memory has truly came back. Now still have problems at times when lazy speech is slurred, dizziness and my h as nds tremor and l looked it up and its symptoms of both encephalitis and encephalopathy so l think when my ammonia levels go up that can be z cause of my problems. When l went to the mayo clinic and saw the hepatogist he said l will have those problems and it will come and go. So usually when l dont feel right l won't go out, drive or take care of my grandson. I have a daughter who want me to have me care for grandson. And l really want to because l haven't been able to do that with my other grandchildren. So its summer now and l have my oldest grandchild come over to help me. I am able to drive but again won't if l don't feel right. I don't take the highway anymore l take the streets and so far i am doing well. And my doctors ask me if l know when something is going on and I'll say yes. When my ammonia level went up l told my doctor if he could order my ammonia test. And l have my lifeline and now l am going to order a ID for my wrist for my medical history because it something bbn happens and l fo yo the hospital by EMSA they get a psych doctor come to see me and ask questions because they think l am going to commit suicide or hurt myself and that's because i have been on antidepressants and not the disease
So l have to protect myself. And one time l did go out in my addition and acted like l was crazy and it was because l had my procedure and had a reaction to the anesthesia. And l have had 2 other times and once they had to call my gastroenterologist to see what to do..So l have to make sure all the time they are up to date with my allergy list. My doctors have ruled out a lot of diagnoses l had for years which is definitely a blessing and l don't go th o a neurologist anymore. And I'll really dont have to a cardiologist anymore. And like 2days ago l didn't feel right so l just didn't go out I'll was in the bed and l had installers one in and do m th work. So just take care of yourself and when you don't feel good just rest. I will sometimes read or watch TV. And l like game shows to keep my brain active and help my memory which l fo very good at answering. So try some different things you like and it will help you. Oh and l forgot to answer one of your questions. Yes l had a MRI, EEG's and PET test. They had to see if the white matter effected my brain because l kept falling and sometimes l was conscious or unconscious.
@jeancary l am sorry l didnt get back had a crazy weeks since l last posted. My ammonia levels were first 63 then l had to increase my genalac l had to have it drawn again and it went down to 54. So l am very thankful it didn't go up again. I should have it drawn again to make sure it goes back down to 51 but my doctor is retiring so that's not his concern right now. After l had my last blood drawn they stuck me 3times and l always tell them will come back but this girl was determined to get my blood drawn. So again it wasn't successful so after 3 sticks she told me to come back. I going out the clinic and l was so dizzy l thought l was going to fall. I got to my car but l wasn't going to drive home because l couldn't see very well and was starting to tremble. I called my family but one was in a meeting my husband was watching my grandson and he's only 6months and my daughter couldn't get away from the hospital. Her house supervisor just died so my husband told me he called the doctors office to tell them l was in the parking lot and couldn't drive home but he couldn't get an answer. I couldn't get out to get help l was to dizzy, l couldn't see and my hands were trembling so l just sat and prayed while l waited for it to subside. Then l started to get better but was still scared to drive but l did to get home. I only live about 5min away and l know to drive on the outer lane s ok if something was to happen l wod hit th he sidewalk. So l got home safely and l didn't hurt anyone else. The next day told the girl what happened and that she will only stick me twice and then l am going home. No one ha add told me have hydrcephalus but my daughter said she thinks l could have it. She told me mom keep telling you to have something to drink and some candy or food on you. Because something like this has happened to me in church and th hey had to hurry and get me something to drink. Right now lm can't really go to a doctor. My back just gave out and lm am still dealing with a broken ankle. So right now am staying home until l can see my orthopedic for my back first because i had bac lm surgery so l don't know what has going to do
And next wee lm get my boot off from my ankle. But l am not going to let anything get me down it's been worst then this and l am just going to pray my bac lm will heal up so l won't have to hav ed surgery. Then l can go to m uh PCP. A temporary one just until September.
Sorry you had such a bad stick experience- I’ve had some also. I have learned that going to a phlebotomist is best, preferably someone in the lab reimbursed by your insurance. I go to Labcorp instead of letting a nurse or practitioner. I only had one practitioner ever able to perform a good stick. What is the issue with the ammonia?
PS, one particular symptom of normal pressure hydrocephalus is urinary incontinence.
@jeancary I am aware now when my ammonia levels go up, My hands will tremor, slurred speech and coordination problems and my pressure will go up high. So l will have to ask to get my ammonia levels checked. When lm went the first time it was 63 then 2wks later it was 54. I am so thankful everytime l can get a handle of it. And sometimes if l feel like l am not feeling well l won't drive. One time it happened to me and l was driving home l was very nervous so l hurried up and pulled over and called my family to come get me. It hasn't happened like that until recently when the phlebotomist tried to draw my blood 3times and l told her l didn't drink but one glass of water. I told her l would come back the next day. I told her l always tell anyone who draws my blood if they can't get it l will be glad to come back. But she wouldn't listen and l should have inforsed it. Then when l left l couldn't even drive home or go back into the clinic for help. So they had to increase my lactulose and l make sure l always have something to drink and a snack with me. It's like l am a diabetic . But l am always praying that l won't have to go through this much longer. Sometimes people can look in my eyes and see something is not right. So with HE you can have bleeds in your brain which is a ischemic stroke, heart issues, seizures, falling and so many other things because it's your liver not functioning properly so your ammonia levels must stay normal. And here where l live if it's over 51 it's high. Now l read the reading can be different depending on labs and even where you live but right now l am doing fine. And l have a lifeline sometime l wonder why because l fell yesterday and no response but if l move a certain way or put it down hard it will tell you a fall has been signaled. Silly isn't it. But l must say after crying and praying to God after 19yrs to get your memory back its definitely a miracle and all my doctors can't explain that one. And to take a test of you got a 70 that was something you were glad to have even though you felt that wasn't a good grade and then take a test after 19yrs and get a 90. I can definitely tell anyone it can be done.
Thanks for your information. It must be tough. I’m going to inquire about ammonia levels with my
GP.
I am sorry, I have no idea of anything on either.
I have been diagnosed with both NPH and white matter disease. Where may I find information of the affects of both? (My neurologist is not even familiar with ETV.)
Hi, @stephenluptak - I've merged your post with this one so you can meet members like @techi and @jeancary who have talked about either white matter disease or normal pressure hydrocephalus (NPH). I'd also like you to meet @nancywootten @kajunangel67 and
@jc2buds. Hoping they will have some insights for you on your diagnoses.
I'd also like to mention these resources:
- Mayo Clinic information on hydrocephalus, https://www.mayoclinic.org/diseases-conditions/hydrocephalus/symptoms-causes/syc-20373604
- NIH information on normal pressure hydrocephalus (NPH), https://www.ninds.nih.gov/Disorders/All-Disorders/Normal-Pressure-Hydrocephalus-Information-Page
Did your doctor have a theory on the cause of the NPH in your case, @stephenluptak?
Thank you for leads. I will follow-up.
My KC neurologist diagnosed me with Alzheimer's, but the neurosurgeon in Kansas City said that it was NPH after my laminectomy. He didn't know why I had NPH, but speculated that it was associated with the various concessions I've had over the years. I have no confidence at all with the various neurologists that I've met in Memphis, Are there any that you would suggest? Thank you!