General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 06-17-2017, 10:31 AM #11
PAYNE1 PAYNE1 is offline
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No, I don't have the spine report. Thanks for reminding me to get it.
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Old 10-14-2017, 12:00 AM #12
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Default I've been diagosed with this, too

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Originally Posted by PAYNE1 View Post
I've just been diagnosed with white matter disease. Anybody else have it?

I understand it's related to MS.
Yes, I've been diagnosed with this, too, in Feb 2017. I was complaing to GP about progressive symptoms of what I've read about MS. My GP said because I am male and 77 years old I cannot have MS. Was sent to MRI of my brain.
Results showed I've had 3 mini-strokes in the micro blood vessels in the White Matter, 2 in the right side and 1 in the left side. My GP dismissed it as normal even with my progressively debilitating leg muscle pain and weakness. I managed to see a neurologist. He said is was White Matter Disease but did not indicate there was more then 1 kind of White Matter disease. It wasn't until I read in this forum that White Matter disease is more of a overall term covering several different brain problems including MS. No wonder what I am feeling matches the list of symptoms for MS I find online.

Since the brain MRI in Feb 2017, I have experience more come and go symptoms such as shaky handwriting, left eye peripheral blindness, much more balance inabilities and extreme fatigue and extreme inability to focus and concentrate.

This time I am waiting to be scheduled for a Cat Scan (not another MRI because the doc didn't know if medicare would pay for another MRI withibng a year time period). I don't know of a Cat Scan will be able to see anything. And nothing was ordered for my scan. I've had diabetes for over 25 years and high BP varies between 120 and 150. So the docs are using a Diabetic Nephropathy diagnosis because, I believe, it is an easy cop-out.

But I do feel vindicated to learn that MS is related to White Matter disease and my symptoms are't just made up.

Larry Kramm
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Old 06-29-2018, 11:37 PM #13
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Default Needing some support

My husband was diagnose with white matter disease about 6 years ago. It wasn't too bad until this year, his forgetfulness is so frustrating for me along with other things. I've been falling apart all year cause I don't know how to deal with what's happening to him. How does one deal with the frustration?
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Old 06-30-2018, 07:05 AM #14
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Welcome to NeuroTalk though I am sorry that it is in such hard circumstances.

Are there any support groups for the partners of people with white matter disease that you can look to for support?

With care.
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Old 06-30-2018, 09:12 PM #15
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Default Too much crying

That's what I'm trying to find is a support group but so far all I've found are websites that help those with a disease. Lately he's been losing things and we end up searching high and low for them cause he can't remember what he did with them. Later on I end up crying. He has some stuff going on that I'm not sure if it's related to his disease or not. Would be nice to find other people going through this so I can ask them and get the support I need. I'm tired of all the crying I've been doing lately.
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Old 06-30-2018, 10:19 PM #16
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We have a Caregiver forum - A place for people who are a caregiver to another to find help and support.-
https://www.neurotalk.org/forum56/

Some senior centers or home care services ( Home Instead, has group meetings..), maybe your local hospital may have a resources list or know of places for support groups.
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Old 06-30-2018, 11:58 PM #17
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Thanks for the help
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Old 02-19-2022, 10:40 PM #18
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Quote:
Originally Posted by a1sweetd View Post
That's what I'm trying to find is a support group but so far all I've found are websites that help those with a disease. Lately he's been losing things and we end up searching high and low for them cause he can't remember what he did with them. Later on I end up crying. He has some stuff going on that I'm not sure if it's related to his disease or not. Would be nice to find other people going through this so I can ask them and get the support I need. I'm tired of all the crying I've been doing lately.
It's rather complex. With the exact diagnosis and term, ask those website owners of they know of any support organisations. However, a number of things can also contribute to things, which might increase dysfunction. I'm not saying he will have any of these, but, of he does it could help. A lot of dysfunction comes along before it's permanent. The "broken glass" look in the MRI causes dysfunction before it gets more permanent. Stopping that just might help a lot. With me it restored significant dysfunction but I had additional issues, that treated, helped me from forgetting everything all the time, and brought up my cognitive function again.

Here are some other things that affect white matter or memory

- Genetic and age related problems dealing with, or recycling (genetic, active form of the vitamin), the vitamin b12. The genetic problem is unlikely, but older people have an issue absorbing B12. But, if the problem is recycling B12 to its activd methylated form, taking B12 won't get checked converted to the active form.

- pyrolia. This is a condition where a component of the blood binds to zinc and takes it out the body. There are three of do different nutrients involved. Zinc at the wriong dosage is neurotic, so find a health practitioner competent in this is important.

- ME/Chronic Fatigue is associated with demyelination. A health care provider that specislises in treatment. Research indicates part viral cells in cells affecting cellular waste clearing and mitochondrial ATP energy production. There are a series of nutrients that help too. ME is associated with nutrient malabsorption and gut issues. Store bought probiotic tablets tend not to be very week compared to natural fermented foods.

- Autism Spectrum Disorder is associated with demyelination. A health care provider that specislises in treatment. There are a series of nutrients that help too. It is associated with nutrient malabsorption too, and gut issues. Store bought probiotic tablets tend not to be very week compared to natural fermented foods. Digestive enzymes is something else a health professional may cover.

- Lyme's/tick born disease (associated with white matter disease from pathogen from ticks or other insects. If so, see a descent Lyme's specialist. Who might put one onto one of the two salt and vitamin C protocols).

-parasites. Some people affected more, and older people. Harbour pathogens, changing the biochemistry of the body, and modern research indicates strong links with various diseases, and some mental illnesses. This is only a very early feild, that practitioners haven't been educated in (it can take a decade or more for practitioners to catch up with research in general practice).

Not many are competent with the last two above, lack insight into the deep complexities, and imagine things instead.

A these things require health care practitioners competent in them. A lot of misconceptions and outdated understandings, exists with them. So, a good practitioner, who has taken time to investigate these things, in order to properly treat them to the utmost efficacy, is desirable. There are a number out there, who just want to push an opinion.
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