I have been diagnosed with white matter disease. After installation of a shunt to control normal pressure hydrocephalus, I had a brain bleed which was described as something like a stroke. Subsequent evaluation showed no sign of the brain bleed. I have improved in general functionality since then. I still have the white matter disease but I am improving over time, so apparently improvement is possible.

How does ammonia fit in to the white matter disease?

Hi @jeancary, How are you doing?

Pretty well. The shunt was installed on 3/2/16 and I’ve been improving ever since. I did have a brain bleed subsequently but testing at the Lou Ruvo center showed it is now gone. I have no tangles, etc, but do have white matter disease. My balance is bad and I continue with therapy for that. I have proceeded with placement in less restrictive environments over time and am doing well. I was able to get someone to house sit in my home in nj which was a great relief and allows me to be comfortable here in a senior and assisted living facility near my family. I’ve found some really good medical services here and I’m resolved to use them until I feel ready to go back home and sell my house and follow through with my original plan to move to a continuing care facility with my friends, some of whom have already moved. I’m 74 now and it seems that the last 20 years just sped by. I’ll focus more now on myself and my physical health, as I feel I will profit more by pushing forward. It’s hard sometimes but worth it.

My diagnosis was normal pressure hydrocephalus and if I had not had a shunt installed, I would still be in memory care and getting worse instead of better. Another person who posted on this connection may have the same problem. It’s important to get a good diagnosis so that appropriate action can be taken.

@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.