Brain injury white matter, encephalopathy, and encephalitis

Posted by Lisa @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.

@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!

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How do I contact @techi, @jeancary, @nancywootten @kajunangel67 and @jc2buds? Thank you.

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@stephenluptak

Hello, @stephenluptak – my hope is that as @techi @jc2buds @jeancary @nancywootten and @kajunangel67 check their emails and see the mention of them in their notifications, they will return to the discussion in this thread with some input for you.

In the meantime, I'd also like you to meet Connect volunteer mentors @johnbishop and @hopeful33250, who have each experienced neurologic conditions (though distinct from those you mentioned) and may have some input for you on your diagnoses or neurologists.

If you ever wish to seek a second opinion at one of Mayo Clinic's locations in FL, AZ or MN in Neurology, you could request an appointment via this link: mayocl.in/1mtmR63

You mentioned various concessions over the years, but I'm guessing your autocorrect may have changed that and you intended it to be concussions. Is that correct? If so, will you share a bit about how those occurred?

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Hello, @stephenluptak – I have no medical training or background but I definitely agree with @lisalucier that if wanted to get a second opinion, Mayo Clinic would be a great choice. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. I was not familiar with NPH so I did a search and found some information that may be helpful to you.

Barrow Neuroradiologist Links Concussion Symptoms to White Matter Injuries
https://www.barrowneuro.org/researcher-profiles/barrow-neuroradiologist-links-concussion-symptoms-to-white-matter-injuries/

Normal Pressure Hydrocephalus: Vascular White Matter Changes on MR Images Must Not Exclude Patients from Shunt Surgery
http://www.ajnr.org/content/22/9/1665

Pattern of white matter regional cerebral blood flow and autoregulation in normal pressure hydrocephalus
https://academic.oup.com/brain/article/127/5/965/303085

John

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@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!

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Hello @stephenluptak

Many of us who post on Connect have had similar stories of being misdiagnosed or misunderstood by doctors and we can understand how frustrating it is. I know that you must feel frustrated because of all of the conflicting diagnoses you have received. I can only add to what has already been said that a second opinion would be your best option right now.

You definitely need to talk to a medical center (like Mayo) who can sort through all of your tests, medical records and talk with you to help you find an answer. Does this sound like a good idea to you as well?

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@johnbishop

Hello, @stephenluptak – I have no medical training or background but I definitely agree with @lisalucier that if wanted to get a second opinion, Mayo Clinic would be a great choice. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. I was not familiar with NPH so I did a search and found some information that may be helpful to you.

Barrow Neuroradiologist Links Concussion Symptoms to White Matter Injuries
https://www.barrowneuro.org/researcher-profiles/barrow-neuroradiologist-links-concussion-symptoms-to-white-matter-injuries/

Normal Pressure Hydrocephalus: Vascular White Matter Changes on MR Images Must Not Exclude Patients from Shunt Surgery
http://www.ajnr.org/content/22/9/1665

Pattern of white matter regional cerebral blood flow and autoregulation in normal pressure hydrocephalus
https://academic.oup.com/brain/article/127/5/965/303085

John

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Thank you for the links!

I have been in the business end of healthcare for most of my life. And I've had some of the worst care at the facilities where I worked, especially from physicians that I represented against health insurance companies.

I have not been able to work much in the 21st century. As such, I can't afford trips to any of the Mayo facilities. So I am pretty much on my own.

Please take care!

Steve

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@stephenluptak

Thank you for the links!

I have been in the business end of healthcare for most of my life. And I've had some of the worst care at the facilities where I worked, especially from physicians that I represented against health insurance companies.

I have not been able to work much in the 21st century. As such, I can't afford trips to any of the Mayo facilities. So I am pretty much on my own.

Please take care!

Steve

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Hi Steve @stephenluptak, Another tool I use for researching health issues, new treatments, and clinical trials is Google Scholar. It's useful because you can sort the links it finds by year and get the most current information at the top.

https://scholar.google.com/

Can you let us know if you are able to find something that helps you?

Hoping you find some answers soon.

John

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@stephenluptak

Thank you for the links!

I have been in the business end of healthcare for most of my life. And I've had some of the worst care at the facilities where I worked, especially from physicians that I represented against health insurance companies.

I have not been able to work much in the 21st century. As such, I can't afford trips to any of the Mayo facilities. So I am pretty much on my own.

Please take care!

Steve

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Good morning, @stephenluptak

I just read your latest post and I see that you don't feel you can afford a trip to Mayo right now, and that is understandable. (Please remember that they have 3 facilities in Minnesota, Arizona and Florida)

In lieu of making a Mayo trip, look for a teaching medical center in your area (I live near Univ. of Michigan) which qualifies as a teaching/research hospital.

Another option would be to connect with an organization that supports people with brain disorders, they will often have a list of specialists in a particular disorder and will list their names and addresses from all over the world. I have a rare type of cancer, Neuroendocrine Tumors, and the national NET organization has a list of all of the researchers/specialists throughout the world. Through Mayo Connect, I have been able to help people find specialists, even in Sweden.

If you need some more help finding the best doctor to treat you, will you let us know?

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Hello again @stephenluptak,

One more thought for you in seeking the best treatment available for you. Are you aware that Mayo Clinic has affiliated hospitals throughout the country?
Here is a link to an article about this, https://www.mayoclinic.org/documents/cautiously-mayo-builds-an-empire/doc-20139626.

As you can see, from this article, the affiliated hospitals have direct contact with Mayo doctors for consultations. It might be a good option for you to consider in order to get the Mayo expertise, but just closer to home.

If you are interested in finding out more about a Mayo affiliated hospital in your state, you might consider giving one of the Mayo facilities a call and finding out where the closest affiliated hospital is to you.

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@hopeful33250

Hello @stephenluptak

Many of us who post on Connect have had similar stories of being misdiagnosed or misunderstood by doctors and we can understand how frustrating it is. I know that you must feel frustrated because of all of the conflicting diagnoses you have received. I can only add to what has already been said that a second opinion would be your best option right now.

You definitely need to talk to a medical center (like Mayo) who can sort through all of your tests, medical records and talk with you to help you find an answer. Does this sound like a good idea to you as well?

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I would like to have access to Mayo, but I can't afford it. Is there a quality medical center in Memphis TN? So far, I have been less than impressed from the neurologists in Memphis.
PS: My dad recuperated from his WWII wounds at Mayo. He described it as a modern-day Lourdes! The Mayo staff performed miracles for my dad!

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@hopeful33250

Hello again @stephenluptak,

One more thought for you in seeking the best treatment available for you. Are you aware that Mayo Clinic has affiliated hospitals throughout the country?
Here is a link to an article about this, https://www.mayoclinic.org/documents/cautiously-mayo-builds-an-empire/doc-20139626.

As you can see, from this article, the affiliated hospitals have direct contact with Mayo doctors for consultations. It might be a good option for you to consider in order to get the Mayo expertise, but just closer to home.

If you are interested in finding out more about a Mayo affiliated hospital in your state, you might consider giving one of the Mayo facilities a call and finding out where the closest affiliated hospital is to you.

Jump to this post

@stephenluptak I didn't know about the other institutions with connections to Mayo doctors and I did a little searching and found this list on the Mayo Clinic website. https://www.mayoclinic.org/about-mayo-clinic/care-network/members

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Thank you!

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In reply to @stephenluptak "Thank you!" + (show)
@stephenluptak

Thank you!

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I am not allowed to drive; my wife is to ill to take me on a long trip. Are you aware of Mayo-quality care in Memphis TN?

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@hopeful33250

Good morning, @stephenluptak

I just read your latest post and I see that you don't feel you can afford a trip to Mayo right now, and that is understandable. (Please remember that they have 3 facilities in Minnesota, Arizona and Florida)

In lieu of making a Mayo trip, look for a teaching medical center in your area (I live near Univ. of Michigan) which qualifies as a teaching/research hospital.

Another option would be to connect with an organization that supports people with brain disorders, they will often have a list of specialists in a particular disorder and will list their names and addresses from all over the world. I have a rare type of cancer, Neuroendocrine Tumors, and the national NET organization has a list of all of the researchers/specialists throughout the world. Through Mayo Connect, I have been able to help people find specialists, even in Sweden.

If you need some more help finding the best doctor to treat you, will you let us know?

Jump to this post

Would UT-Memphis qualify as a quality, teaching, research hospital? How would I find out? Thanks!

REPLY
@johnbishop

Hi Steve @stephenluptak, Another tool I use for researching health issues, new treatments, and clinical trials is Google Scholar. It's useful because you can sort the links it finds by year and get the most current information at the top.

https://scholar.google.com/

Can you let us know if you are able to find something that helps you?

Hoping you find some answers soon.

John

Jump to this post

@johnbishop Thank you!

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@stephenluptak

Would UT-Memphis qualify as a quality, teaching, research hospital? How would I find out? Thanks!

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@stephenluptak

Do they have a medical school? If so, you might check out their neurologists online and see if any have specialities in the areas where you need help. Also, you could call the neurology/brain department and explain your problem and see what they say.

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