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MRI: White Matter Lesions?!

Methyl90

Senior Member
Messages
280
Wow. This is not very common.
I was concerned since my brother died in 2014 because of ALS. For this reason, I consulted with a different specialist in 2018. He concluded it was Myalgia, not ALS.
Would you please tell us the results?
I don't have the results of the MRI at hand, in my case the signals are much closer to ALS as there are evident bone asymmetries already observed in cases of affected motor neurons...
 

lenora

Senior Member
Messages
4,968
Hi @Methyl90..........One sure way of testing for say, autoimmune encephalitis, is via a spinal tap as per the Mayo Clinic guidelines. I had. two during this ordeal, and they've improved immensely since I had my first one some 35++ years ago. As long as your knees are fine, it will be over in minutes & a numbing agent is used to begin with.

If you have bad knees, I would notify them as I'm sure it could be done on your side with your back arched. Just be sure to lay flat for the required number of hours after the test.

A psychiatrist is used to assess your mental capacities (which are affected), mine were but not to a severe state, luckily. This test will help rule out most situations....talk to your doctor and see what he/she says. I do wish you better health. Yours, Lenora
 

hapl808

Senior Member
Messages
2,180
Hi @Methyl90..........One sure way of testing for say, autoimmune encephalitis, is via a spinal tap as per the Mayo Clinic guidelines. I had. two during this ordeal, and they've improved immensely since I had my first one some 35++ years ago. As long as your knees are fine, it will be over in minutes & a numbing agent is used to begin with.

Not an area I know a lot about, but I've seen a few anecdotal reports of people who reacted badly to spinal taps with CSF leaks, etc. I believe that happened to a member of our forum as well. So while it may be necessary for some, it seems like a serious procedure (apparently leaks can be very challenging to diagnose and fix in some).
 

lenora

Senior Member
Messages
4,968
Yes, leaks can occur.....but they can occur after many procedures. It's not something to be taken lightly for sure, but sometimes it's the only way to rule something out.

A muscle biopsy may lead to some info that you don't have now. Not too long ago, we didn't have these at hand. It's a very fine line to be sure. Yours, Lenora
 
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SWAlexander

Senior Member
Messages
1,962
A muscle biopsy may lead to some info that you don't have now.
You are right, but what comes after a diagnosis?
I have had CSF leeks since my Chiari surgery. It appears mostly as soon as I have brain inflammation. There is nothing they can do about it besides another surgery - if they find the leaky spot in the first place.

I forgot to post his:

Myalgic Encephalomyelitis: Symptoms and Biomarkers
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/

 
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SWAlexander

Senior Member
Messages
1,962
Posting:
Herpes Simplex White Brain matter

New white matter changes (blue arrow) after previous herpes simplex encephalitis should prompt screening for NMDA Encephalitis. Autoimmunity is triggered by viral infections commonly. Note the mature gliotic scarring from the initial viral assault (red arrow).

Q: How do we differentiate it neuroradiologically from chronic granulomatous herpetic encephalitis?

A: No enhancement, nothing granulomatous.

Q: Can this be seen on a non-contrast magnetic resonance imaging?

A: Absolutely and more relevantly

A: Also remember to screen both serum and CSF!
 

lenora

Senior Member
Messages
4,968
Thanks for the information @SWAlexander. The answers to Autoimmune Encephalitis are beginning to come in and that's very good.

I'll ask my new neurologist about the test (wish me luck....she's new and looks at me like I'm a Martian). My old neurologist of probably 35 years died a year ago. I feel like I'm wandering in the wilderness. It takes time to build a relationship with a good doctor. Personalities are important.

I have Herpes Simplex I (always a cold sore, but rarely) as also found in my shingles attacks (nightmare city) and now Autoimmune Encephalitis. I have never read of anyone having this a second time and it does affect the very young.

I would like to say that it's standard procedure for a spinal tap to be done and sent to the Mayo or Cleveland Clinic. I had two b/c it was in the early days of the illness. Nothing of great importance was known.

To make it easier for those who may be affected in the future, even though there are tests. it is of upmost important for a neuro-psychiatrist to make a diagnosis about how the brain has been affected. Many people have ended up in mental hospitals b/c of the symptoms of this illness.

Being in my 70's it was all a bit of a surprise. It's serious and can, of course, cause death. I'm trying to stay on top of this as well as my two types of epilepsy (caused by the encephalitis?), a heart attack at the same time and multiple stents. I will say that I feel my short-term memory was affected by all that occurred.

Thanks for the information you so readily share. Have you been affected yourself? Yours, Lenora
 

Violeta

Senior Member
Messages
3,009
What do you think of olive leaf extract being helpful.

I wonder if Nemechek's protocol for coat hanger pain is actually dealing with this problem.
https://www.nemechekconsultativemedicine.com/blog/coat-hanger-neck-pain-copy/


Olive Leaf Polyphenols Attenuate the Clinical Course of Experimental Autoimmune Encephalomyelitis and Provide Neuroprotection by Reducing Oxidative Stress, Regulating Microglia and SIRT1, and Preserving Myelin Integrity​


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7415106/
 
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Methyl90

Senior Member
Messages
280
What do you think of olive leaf extract being helpful.

I wonder if Nemechek's protocol for coat hanger pain is actually dealing with this problem.
https://www.nemechekconsultativemedicine.com/blog/coat-hanger-neck-pain-copy/


Olive Leaf Polyphenols Attenuate the Clinical Course of Experimental Autoimmune Encephalomyelitis and Provide Neuroprotection by Reducing Oxidative Stress, Regulating Microglia and SIRT1, and Preserving Myelin Integrity​


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7415106/


I personally now tolerate NAC spread throughout the day, it improves the responses of the HPTA axis.

In the case of diagnostic uncertainty (unfortunately you inevitably end up in a psychiatric clinic without any minimal success) it is best to explore all avenues even if not everyone has the economic possibilities (state salary, insurance, etc.) but above all when you end up in psychiatry you will have even less credibility even by family members. It's not easy. I had a muscle biopsy in which a non-specific "myopathy" and other general markers emerged... I believe that the lumbar sample is more useful together obviously with an MRI with contrast. I'll have to do it again in June, now 8 years after the last one. In the meantime I act mainly in slowing down the possible degeneration... if I improve the neuronal signals I realize that downstream the endocrine and immune signals are better... look for something that you can tolerate for neurotrophic purposes, lowering neuro inflammation, auto/myth phagy , choose whether to prefer fats or carbohydrates, digestive enzymes, purified water, keep liver detoxification active and constant. Monitor sleep and digestion as a tool...from there you understand how to change things. Use them in a cyclical and varied way.

I think taking copper helps increase estrogen which increases ceruloplasmin and perhaps myelin. If you are toxic to it in your liver and brain (like we all are) you need to pay attention 👍 (zinc / vit C balance).
 
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