1. < Neuropathy

White Brain Matter Disease - Treatment Options and Clinical Trials

Posted by zoetise @zoetise, Aug 10, 2021

Are there any treatments available other than keeping BP and Cholesterol under control? Are there any trials underway

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Aug 11, 2021

Hello @zoetise, Welcome to Connect. You will notice that we changed the title of your discussion a little to better describe your question and hopefully bring in other members who can share their experience or information on white matter brain disease. In your member profile you mentioned you were diagnosed with leukoaraiosis four months ago after having a transient ischemic attack (TIA). You are looking for any treatments that might be available to help with your symptoms -- constant low grade headache, dizziness, balance and neuropathy.

I found the following information that may help answer some of your questions while we wait for other members to respond.

-- What to know about white matter disease: https://www.medicalnewstoday.com/articles/white-matter-disease
-- New Treatment Approaches to Modify the Course of Cerebral Small Vessel Diseases: https://www.ahajournals.org/doi/10.1161/STROKEAHA.119.024150
-- Mayo Clinic Clinical Trials - Small Vessel White Matter Disease: https://www.mayo.edu/research/clinical-trials/diseases-conditions/small-vessel-white-matter-disease

@techi, @cjhmayo3, and @ghh have talked about white matter disease in other discussions and may have some thoughts or suggestions to share with you. I have neuropathy and balance problems also. Has your doctor shared any thoughts or suggestions on any treatments or therapies that might help?

REPLY
3 replies
zoetise | @zoetise | Aug 15, 2021
In reply to @johnbishop "Hello @zoetise, Welcome to Connect. You will notice that we changed the title of your discussion..." + (show)
@johnbishop

Hello @zoetise, Welcome to Connect. You will notice that we changed the title of your discussion a little to better describe your question and hopefully bring in other members who can share their experience or information on white matter brain disease. In your member profile you mentioned you were diagnosed with leukoaraiosis four months ago after having a transient ischemic attack (TIA). You are looking for any treatments that might be available to help with your symptoms -- constant low grade headache, dizziness, balance and neuropathy.

I found the following information that may help answer some of your questions while we wait for other members to respond.

-- What to know about white matter disease: https://www.medicalnewstoday.com/articles/white-matter-disease
-- New Treatment Approaches to Modify the Course of Cerebral Small Vessel Diseases: https://www.ahajournals.org/doi/10.1161/STROKEAHA.119.024150
-- Mayo Clinic Clinical Trials - Small Vessel White Matter Disease: https://www.mayo.edu/research/clinical-trials/diseases-conditions/small-vessel-white-matter-disease

@techi, @cjhmayo3, and @ghh have talked about white matter disease in other discussions and may have some thoughts or suggestions to share with you. I have neuropathy and balance problems also. Has your doctor shared any thoughts or suggestions on any treatments or therapies that might help?

Jump to this post

No. I find everyone I have seen just says there’s no treatment and live with it. I exercise, keep BP and cholesterol under control, take vit Bs etc.

REPLY
1 reply
zoetise | @zoetise | Aug 15, 2021
In reply to @johnbishop "Hello @zoetise, Welcome to Connect. You will notice that we changed the title of your discussion..." + (show)
@johnbishop

Hello @zoetise, Welcome to Connect. You will notice that we changed the title of your discussion a little to better describe your question and hopefully bring in other members who can share their experience or information on white matter brain disease. In your member profile you mentioned you were diagnosed with leukoaraiosis four months ago after having a transient ischemic attack (TIA). You are looking for any treatments that might be available to help with your symptoms -- constant low grade headache, dizziness, balance and neuropathy.

I found the following information that may help answer some of your questions while we wait for other members to respond.

-- What to know about white matter disease: https://www.medicalnewstoday.com/articles/white-matter-disease
-- New Treatment Approaches to Modify the Course of Cerebral Small Vessel Diseases: https://www.ahajournals.org/doi/10.1161/STROKEAHA.119.024150
-- Mayo Clinic Clinical Trials - Small Vessel White Matter Disease: https://www.mayo.edu/research/clinical-trials/diseases-conditions/small-vessel-white-matter-disease

@techi, @cjhmayo3, and @ghh have talked about white matter disease in other discussions and may have some thoughts or suggestions to share with you. I have neuropathy and balance problems also. Has your doctor shared any thoughts or suggestions on any treatments or therapies that might help?

Jump to this post

I didn’t think there were any treatments available for my disease. I know there are stem cell treatments being done in Holland and I will go there if it is confirmed.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 15, 2021
In reply to @zoetise "I didn’t think there were any treatments available for my disease. I know there are stem..." + (show)
@zoetise

I didn’t think there were any treatments available for my disease. I know there are stem cell treatments being done in Holland and I will go there if it is confirmed.

Jump to this post

@zoetise, Here's some more information on the topic that may be helpful.

New Stem Cell Therapy Opens Doors for Treating Stroke and Dementia: https://www.genengnews.com/news/new-stem-cell-therapy-opens-doors-for-treating-stroke-and-dementia/

REPLY
1 reply
zoetise | @zoetise | Aug 15, 2021
In reply to @johnbishop "@zoetise, Here's some more information on the topic that may be helpful. New Stem Cell Therapy..." + (show)
@johnbishop

@zoetise, Here's some more information on the topic that may be helpful.

New Stem Cell Therapy Opens Doors for Treating Stroke and Dementia: https://www.genengnews.com/news/new-stem-cell-therapy-opens-doors-for-treating-stroke-and-dementia/

Jump to this post

How does one become part of a study? I believe in the stem cell approach and would to become a participant.

REPLY
2 replies
zoetise | @zoetise | Aug 15, 2021
In reply to @zoetise "How does one become part of a study? I believe in the stem cell approach and..." + (show)
@zoetise

How does one become part of a study? I believe in the stem cell approach and would to become a participant.

Jump to this post

Would like to become a participant.

REPLY
2 replies
zoetise | @zoetise | Aug 15, 2021
In reply to @zoetise "Would like to become a participant." + (show)
@zoetise

Would like to become a participant.

Jump to this post

Thank you so much, John

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 16, 2021
In reply to @zoetise "How does one become part of a study? I believe in the stem cell approach and..." + (show)
@zoetise

How does one become part of a study? I believe in the stem cell approach and would to become a participant.

Jump to this post

@zoetise, I think the first step to become part of a clinical trial is to find a study that you are interested in and learning if you meet the eligibility criteria for the study. Here are some studies listed on Mayo Clinic's website.

-- Small Vessel White Matter Disease Clinical Trials: https://www.mayo.edu/research/clinical-trials/diseases-conditions/small-vessel-white-matter-disease

You can also search for clinical trials on the ClinicalTrials.gov website here: https://clinicaltrials.gov/ct2/home

REPLY
gchanscomcast | @gchanscomcast | Dec 13, 2021
In reply to @johnbishop "Hello @zoetise, Welcome to Connect. You will notice that we changed the title of your discussion..." + (show)
@johnbishop

Hello @zoetise, Welcome to Connect. You will notice that we changed the title of your discussion a little to better describe your question and hopefully bring in other members who can share their experience or information on white matter brain disease. In your member profile you mentioned you were diagnosed with leukoaraiosis four months ago after having a transient ischemic attack (TIA). You are looking for any treatments that might be available to help with your symptoms -- constant low grade headache, dizziness, balance and neuropathy.

I found the following information that may help answer some of your questions while we wait for other members to respond.

-- What to know about white matter disease: https://www.medicalnewstoday.com/articles/white-matter-disease
-- New Treatment Approaches to Modify the Course of Cerebral Small Vessel Diseases: https://www.ahajournals.org/doi/10.1161/STROKEAHA.119.024150
-- Mayo Clinic Clinical Trials - Small Vessel White Matter Disease: https://www.mayo.edu/research/clinical-trials/diseases-conditions/small-vessel-white-matter-disease

@techi, @cjhmayo3, and @ghh have talked about white matter disease in other discussions and may have some thoughts or suggestions to share with you. I have neuropathy and balance problems also. Has your doctor shared any thoughts or suggestions on any treatments or therapies that might help?

Jump to this post

No, she says there are none

REPLY
2 replies
twobrooklyn | @twobrooklyn | Dec 13, 2021
In reply to @zoetise "I didn’t think there were any treatments available for my disease. I know there are stem..." + (show)
@zoetise

I didn’t think there were any treatments available for my disease. I know there are stem cell treatments being done in Holland and I will go there if it is confirmed.

Jump to this post

Be careful with the stem cell treatment. Expensive and not FDA approved!

REPLY
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