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Old 02-19-2022, 09:32 AM #1
Wayne M Wayne M is offline
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Default White Matter Disease micro blood vessel. - Support groups & Treatment Australia?

Hi. I've been diagnosed with white matter on the MRI. The specialist said it was white matter disease from micro blood vessel constriction, but did not give a name (as with others here). He had it himself. So, I was very fortunate, because in Australia, they tend not to diagnose stuff like this and instead think the worse. The hospital neurologist was neurotically quickly looking for other unrelated things silently, and having not found anything he wanted to find, totally missed it and didn't want to do any more. I had to go to another city to find another neurologist, and he missed it (hardly anybody in that city either). After a lot of cognitive loss, I went to a doctor in the capital, who referred me to the specialist. But many years of decline.

I'm looking for support groups in Australia and North Queensland, treatment and support?

I've had some other stuff interfere with treating the white matter to hold it back, over the last couple of years. I am waiting for a very long time to get to see the hospital neurologist again, who is just leaving me despite the decline. I was warned not to let it get any worse by the specialist, as I was on the border of it becoming bad. I can only type clearly, because I was fortunate to be very cognitive before, and typing now, just doing it on reflex, not thinking very much, to avoid the damaged areas. But, I am having some regression and it's hard to read at the moment, so I am finding it hard to read through things.

It's a nightmare, as it's coming on top of other things. Something had to be done to support people properly.

I'm going to outline my experience. In my medical history. ASD, Tourette's, B12 issues, and other nutrients deficiencies. I then caught something which produced ME. However, mid last decade, I got a tick bite with bright red circle around it. I then got a lot sicker. However, I found taking vitamin C affected it, and salt, and high doses the better. I've always had skin issues since young, where no wheat products and vitamin C helped it (what else I don't know). However, a few years ago, there was a parasite infestation here, and I developed ghastly lesions over my skin, and internal infestation, and a lot of decline again. These all have their own comorbid conditions, which are now largely completely subdued when using matching nutrients. The tick bite looks like the start of the major cognitive damage, but also the B12, zinc and B6 etc, and demyelination issues (ASD and ME). People with these tick issues (and some other insects) are associated with white matter. It's become a real struggle.

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Old 02-19-2022, 12:17 PM #2
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Welcome, WayneM!


I hope you'll find some answers here and some people to share your experience with. You must have had a rough time with your health, and I'm sorry I can't be more helpful. I've had MS since about 1980.

Encountering unhelpful doctors can be very discouraging and frustrating. I hope you now have a doctor who cares and who knows a thing or two.
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Old 02-19-2022, 09:35 PM #3
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Thank you Agate,

Unfortunately, where I live, the competent doctors tend to stay near the capital, a very long way away. The more bullishly conservative, or diverting, a doctor is the more they are over compensating. We often struggle to get competent specialists here, and have a number that travel from the capital or are attached to the hospital, with a private practice, resulting in long wait lists going into years, unless you pay private to see the same doctor, taking time off from them servicing the public wait list, and helping to keep out competing private specialists. A lot of the incentives to get better specialist from decades ago, were removed. Unfortunately, I now can't travel.

I have a close relative with MS, which I did a lot of research helping, which is how I realised I had been having similar symptoms. Micro blood vessel based white matter disease is mistaken for MS and Parkinson's. I had another close relative that had Parkinson's. Which makes me wonder (though ASD and ME cause this too).

Anyway, I see there is no subsection for other white matter diseases here?
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Old 02-20-2022, 09:56 AM #4
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Default Keep in mind also--

--that many of the tick-borne diseases, as well as B12 deficiency, can affect white matter and result in quite similar neurological symptoms and even similar MRI findings.

You may have a number of interactive things going on, and it might be hard to pull apart what is contributing to what.
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Old 02-20-2022, 11:52 AM #5
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Quote:
Originally Posted by Wayne M View Post
Thank you Agate,

Unfortunately, where I live, the competent doctors tend to stay near the capital, a very long way away. The more bullishly conservative, or diverting, a doctor is the more they are over compensating. We often struggle to get competent specialists here, and have a number that travel from the capital or are attached to the hospital, with a private practice, resulting in long wait lists going into years, unless you pay private to see the same doctor, taking time off from them servicing the public wait list, and helping to keep out competing private specialists. A lot of the incentives to get better specialist from decades ago, were removed. Unfortunately, I now can't travel.

I have a close relative with MS, which I did a lot of research helping, which is how I realised I had been having similar symptoms. Micro blood vessel based white matter disease is mistaken for MS and Parkinson's. I had another close relative that had Parkinson's. Which makes me wonder (though ASD and ME cause this too).

Anyway, I see there is no subsection for other white matter diseases here?
I don't see any subsection for white matter diseases here but then "white matter diseases" includes quite a number of more specific diseases (including MS traditionally). MS is by far the most common but the others might be regarded as more rare--and so you'd be most likely to find discussions of them here in General Health Conditions & Rare Disorders.

Have you tried doing a search here at NeuroTalk for "white matter disease"?

As glenntaj indicated in the previous post in this thread, when you have several things going on, separating out each one can be tricky. You might have some luck if you could figure out which white-matter disease you have when you have latched onto a doctor who can guide you.
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Old 02-20-2022, 01:34 PM #6
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Quote:
Originally Posted by glenntaj View Post
--that many of the tick-borne diseases, as well as B12 deficiency, can affect white matter and result in quite similar neurological symptoms and even similar MRI findings.

You may have a number of interactive things going on, and it might be hard to pull apart what is contributing to what.
I see. So B12 issues give the dead spots on the MRI as well? That's interesting.

Thanks Glenn.

I had an inkling that the some skin disease that passes through the organs of the body might be a cause, until I heard about the tick stuff. I've actually put together a contraption that kills some pathogens, and things are clearing up. For the first time in a long time in a long time, I feel I can do my own research more easily. I found out about the stuff at an defunct site called Morgellons cure, I think. But, the science behind it is old. Some pathogens are susceptible to magnetic field fluctuations. I expect the guy came a gutsa when he was dressing up in a lab/doctor's coat and offering treatment by putting people in a giant electrical coil, like you slide into a MRI. I imagine the FDA would not be happy with that.
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Old 02-20-2022, 01:38 PM #7
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Originally Posted by agate View Post
I don't see any subsection for white matter diseases here but then "white matter diseases" includes quite a number of more specific diseases (including MS traditionally). MS is by far the most common but the others might be regarded as more rare--and so you'd be most likely to find discussions of them here in General Health Conditions & Rare Disorders.

Have you tried doing a search here at NeuroTalk for "white matter disease"?

As glenntaj indicated in the previous post in this thread, when you have several things going on, separating out each one can be tricky. You might have some luck if you could figure out which white-matter disease you have when you have latched onto a doctor who can guide you.
The micro blood vessel type, that cuts off blood to parts of the brain.

I think it was a suggestion that a 'Other white matter brain diseases' sub-ection might be good to have. That could cover a the rare ones.


Thanks.
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Old 02-20-2022, 04:08 PM #8
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regarding the tick - The best place for doctors knowledgeable in Tick-borne disease in Australia would have to be in Northern New South Wales. I have some old info here somewhere but it might take time to find it and it might not be up to date. It's only been in recent times that our government has even acknowledged that such a thing exists so you're not going to find too many main stream physicians who have treated any of the unfortunate and forgotten patients who are dealing with symptoms similar to Lyme after being exposed to a tick bite.

The Doctor I was thinking about is from Bellingen NSW which is mid north coast I guess. He is Intergrative Medical Practitioner. There is more information available on The Karl McManus Foundation website.
Who We Are - Karl McManus Foundation

There is also a very well known doctor on the Sunshine Coast who treated people by using hyperthermia and very huge doses of vitamin C.. He treated patients with what was termed Chronic Infectious and Inflammatory Disease and Environmentally Acquired Illness but I notice he had been reprimanded by the Health Ombudsman of Qld.. I wasn't aware of that until yesterday. It seems that because "Lyme Disease" isn't recognised in Australia, then practitioners can't say they can treat it whether that is as Lyme, or as CIID or EAI because they are not recognized medical conditions here. At least, that's what I understood from reading the information about the reprimand.

I'm a little confused about the actual name "White matter disease". Is that an umbrella term for many different conditions or is it a symptom of many different conditions?

btw, if you have available $ means to consult alternative doctors, there are a large number of Functional Medicine and Integrative Medicine doctors in places like Cairns. Probably Townsville as well I don't know. Sometimes if you're getting no help from your Neuro or Hospital doctors, then it can be worth having an appointment with someone like that. Just my opinion.

Last edited by Lara; 02-20-2022 at 06:14 PM.
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Old 02-20-2022, 09:08 PM #9
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regarding the tick - The best place for doctors knowledgeable in Tick-borne disease in Australia would have to be in Northern New South Wales. I have some old info here somewhere but it might take time to find it and it might not be up to date. It's only been in recent times that our government has even acknowledged that such a thing exists so you're not going to find too many main stream physicians who have treated any of the unfortunate and forgotten patients who are dealing with symptoms similar to Lyme after being exposed to a tick bite.

The Doctor I was thinking about is from Bellingen NSW which is mid north coast I guess. He is Intergrative Medical Practitioner. There is more information available on The Karl McManus Foundation website.
..

There is also a very well known doctor on the Sunshine Coast who treated people by using hyperthermia and very huge doses of vitamin C.. He treated patients with what was termed Chronic Infectious and Inflammatory Disease and Environmentally Acquired Illness but I notice he had been reprimanded by the Health Ombudsman of Qld.. I wasn't aware of that until yesterday. It seems that because "Lyme Disease" isn't recognised in Australia, then practitioners can't say they can treat it whether that is as Lyme, or as CIID or EAI because they are not recognized medical conditions here. At least, that's what I understood from reading the information about the reprimand.

I'm a little confused about the actual name "White matter disease". Is that an umbrella term for many different conditions or is it a symptom of many different conditions?

btw, if you have available $ means to consult alternative doctors, there are a large number of Functional Medicine and Integrative Medicine doctors in places like Cairns. Probably Townsville as well I don't know. Sometimes if you're getting no help from your Neuro or Hospital doctors, then it can be worth having an appointment with someone like that. Just my opinion.

They have been removing doctors who treat Lyme's like illness, de-registering them. The doctors professional medical assesment is worth nothing, instead beuracracy us deciding arbitrarily inappropriate harm. This has been going on for decades here, clamping down in doctors doing much past what they dictate with disasteros results. It will be driven by a small group who thinks things fit into a narrow range that their desired professional segment thinks. This is group think, and is a psych delusion.. So, everybody is pretty scarred to step out of line and act independently.

I think you will find a number of Lyme's like doctors have disappeared, despite it being completely untrue to say that Lyme's can't be brought into the country. One has to ask about the motivations to think such things. There are news reports of someone who caught Lyme's bear New York, was officially diagnosed there, come back to Australia, and can not get treatment for their system health services, as they don't accept it can be in Australia, but that it can be acquired from overseas, even though, this is exactly what had happened to the person refused subsequent treatment against the rules. The added complication, is that the treatment protocol is very naive, different biochemistry of people react differently, so it may not clear, it may stay withing biofilm etc etc, and I think the immune system eventually reduced or stops anti-body production, not to mention the many types of the bacterium that can evade tests, or which the standard test is not so broad or high enough efficacy. Since the whole handling of Lyme's is inappropriate in this country, it can s hard to get suitable treatment.

I remember maybe 25 years ago, heari.g on radio news, how some doctor had been pulled up for using vitamin b or something. The thing is, that as they try to micromanage (please note the psych) the professional structures to more and more minor segments, to funnel patients and money to segments that doctors could previously address, the doctor has no right left to address that in surgery. Hence, we have "nutritionists" which took away a lot of doctors nutrition related rights to treat. A lot of these professions, have diseases they can not treat, but if you spend a long time, you find there are people who know how to treat, and alternative treatments which are very effective compared to the conventional. The doctors are cut off from the real base evidence, and not allowed to use it, while the treatment options are deliberately funneled into pharmaceuticals protected by requirements for big, and ever increasing, trials. Hence, no non payment treatment has a hope to reach such trials, and the trial standards are aggregate and also unsuitable for treatment in complex multi-functional systems,, however would give perfect statistical significance for magic wands. Which is not that good of science as to only look for one type of result that has to be so clear as to rise out of the statistical noise of all the people it didn't work on (which hides subgroups it did work on).

Another complications for people with Lyme's, is that the pathology often attracts multiple parasite vectors, and maybe specific unusual ones. Which of course, for these unfortunate people, can't exist and evidence can't exist, and so in-depth examination can't exist.

Cairns and Townsville, I think most of those doctors are long gone, or books are full.
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Old 02-21-2022, 02:21 AM #10
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...
I'm a little confused about the actual name "White matter disease". Is that an umbrella term for many different conditions or is it a symptom of many different conditions?...
It's an umbrella term for several different conditions. They're listed in this article (Medical News Today):

White matter disease: Prognosis, symptoms, and treatment
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