5 ms·

I don't have MS (no brain lesions and no o-bands over a 3 year period), but I have an "idiopathic" (unknown) neurological disease with very similar symptoms tha

I don't have MS (no brain lesions and no o-bands over a 3 year period), but I have an "idiopathic" (unknown) neurological disease with very similar symptoms that flare up a few times a year. My cognitive decline has been abysmal the last 5 years and while I'm nearly 40 years old, I'm still not quite there yet so the decline isn't necessarily explainable by aging alone and I first noticed it during the onset of my neurological problems. I used to have a very sharp memory and attention to detail. Today I can't even remember the last conversation I had with my wife and I constantly skip words and letters. I also have significant word-finding difficulty (mostly in speech). There are two things I've done to help remedy this which may be of use to you: 1) learn something new and challenging on a quarterly basis like an instrument or wood-working and 2) Adderall. Go get evaluated for ADHD, because it can easily co-exist with the MS undetected. It's worth looking into I think.

mush_room 4y ago
Yeah, I can relate to your symptoms as well... I really hope you can find a way a diagnosis and a way to recover. I don't know much about the criteria, I suppose you also don't have sensory/motor symptoms. I think amphetamines are a bad gamble with neurological disease, as the extra strain on the brain is worsening the inflammation...
bitL 4y ago
Try megadosing B1 HCL for a month, you might be just super low on it in brain tissues and therefore get mild symptoms that are gradually worsening. You might have slow demyelination - "Thiamine is a cofactor of the very important enzyme Transchetolase of the pentose phosphate shunt that in the brain and in particular in myelin is particularly active." Long-term lack of B1 seems to be pretty common with processed foods diet. B1 is not known to be toxic in any dosage (excess excreted in urine) so it's a safe thing to try.
- cromd 4y ago
  Could this deficiency be caught by some kind of blood test, though? Do regular checkups screen for this? Is there some reason you'd be "super low on it in brain tissues" and not in other parts of the body?
  - bitL 4y ago
    No, unfortunately, the serum level of B1 is not a good indicator of deficiency in tissues. There are some proxy tests like measuring transketolase or pyruvate but only a few labs in the world do them and one typically needs high-performance liquid chromatography etc. See e.g. here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6392124/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6392124/ That's why I think people should just try megadosing B1 for a while as it is not toxic and to get a datapoint if their troubles can be related to a deficiency somewhere. Many people get instant relief of their problems just after a single dose but the effect might get weaker as the supplementation continues. However, it's a good hint for their physician where to look at.
- mush_room 4y ago
  I just remembered that I've also seen B1 megadosing used for MS, with good research. Didn't know about the link with myelin. I took it regularly for certain periods but can't say it made a huge difference, altough research says it does, but it's hard to say and I don't think I was doing it correctly, it looks like it has to be spread out throughout the day.
- y-c-o-m-b 4y ago
  Thanks, just saw this. I appreciate your comment. I'm already on Vitamin B complex, Vitamin D, Vitamin K, Omega 3, magnesium, CDP Choline, and L-Citrulline. I'm sure there's something missing in there. It hasn't noticeably improved things that I know of, but perhaps it's slowing down the decline. Been on this combo for I think 3 years now.
  - bitL 4y ago
    Normally you'd take 2mg B-complex, but here you would take 2,000mg B1 HCL (that's where megadosing comes from). The effects are vastly different to the regular dose, improving enzymatic affinity in mitochondrial processes, breaking down lactic acid and lowering intracranial pressure. Also, megadosing with the whole B-complex is dangerous as some B vitamins are toxic in large quantities. B1 is considered safe.

mush_room 4y ago

Yeah, I can relate to your symptoms as well... I really hope you can find a way a diagnosis and a way to recover. I don't know much about the criteria, I suppose you also don't have sensory/motor symptoms. I think amphetamines are a bad gamble with neurological disease, as the extra strain on the brain is worsening the inflammation...

bitL 4y ago

Try megadosing B1 HCL for a month, you might be just super low on it in brain tissues and therefore get mild symptoms that are gradually worsening. You might have slow demyelination - "Thiamine is a cofactor of the very important enzyme Transchetolase of the pentose phosphate shunt that in the brain and in particular in myelin is particularly active." Long-term lack of B1 seems to be pretty common with processed foods diet. B1 is not known to be toxic in any dosage (excess excreted in urine) so it's a safe thing to try.

cromd 4y ago
Could this deficiency be caught by some kind of blood test, though? Do regular checkups screen for this? Is there some reason you'd be "super low on it in brain tissues" and not in other parts of the body?
- bitL 4y ago
  No, unfortunately, the serum level of B1 is not a good indicator of deficiency in tissues. There are some proxy tests like measuring transketolase or pyruvate but only a few labs in the world do them and one typically needs high-performance liquid chromatography etc. See e.g. here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6392124/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6392124/ That's why I think people should just try megadosing B1 for a while as it is not toxic and to get a datapoint if their troubles can be related to a deficiency somewhere. Many people get instant relief of their problems just after a single dose but the effect might get weaker as the supplementation continues. However, it's a good hint for their physician where to look at.
mush_room 4y ago
I just remembered that I've also seen B1 megadosing used for MS, with good research. Didn't know about the link with myelin. I took it regularly for certain periods but can't say it made a huge difference, altough research says it does, but it's hard to say and I don't think I was doing it correctly, it looks like it has to be spread out throughout the day.
y-c-o-m-b 4y ago
Thanks, just saw this. I appreciate your comment. I'm already on Vitamin B complex, Vitamin D, Vitamin K, Omega 3, magnesium, CDP Choline, and L-Citrulline. I'm sure there's something missing in there. It hasn't noticeably improved things that I know of, but perhaps it's slowing down the decline. Been on this combo for I think 3 years now.
- bitL 4y ago
  Normally you'd take 2mg B-complex, but here you would take 2,000mg B1 HCL (that's where megadosing comes from). The effects are vastly different to the regular dose, improving enzymatic affinity in mitochondrial processes, breaking down lactic acid and lowering intracranial pressure. Also, megadosing with the whole B-complex is dangerous as some B vitamins are toxic in large quantities. B1 is considered safe.