Need some advice with neuromuscular problems

[Wishful]

An immunologist/neurologist told me these symptoms are due to misfiring nerve signals due to immune system dysfunction affecting the CNS.

I have no trouble accepting that theory. I've believed that most of my symptoms are due to brain cell dysfunction due to brain immune (glial) cell dysfunction. Glial cells have important roles in nerve functioning, so even subtle changes could have wide-ranging effects.

 

[JS834]

Thanks everyone for the help. Since my last posting I've gained some additional clarity on my condition. I have continued to experience some tentative improvements since taking the supplement formula even at half of the recommended daily dosage, but what has really helped the situation is a new medication intended mostly for fibromyalgia. It's called savella. Apparently it works by affecting the reuptake of certain neurotransmitters, but it's not clear at all to me how my neurotransmitters could have been a problem, unless it is a synaptic issue. @Violeta Did you have any more information about what you mentioned in your post? It may take another few weeks or even months to fully confirm how well it works though. I did have reasons to believe that immune dysfunction may have played a role, because my immune system appeared to overreact badly to the COVID vaccine (terrible chills, cramps, fatigue, hot flashes, paresthesia, deep sleep), but it's hard to tell which way causality goes.

try google translate it works great
https://translate.google.com/

if things go weird with nerves, it could be a cholin or a methylation thing. it could also still be a b1 deficiency.
remember that b1 needs potassium.
i would check out the refeeding and methylation threads in this forum.

Sorry, I didn't mean it was a language barrier, I just mean that the neurological problems are very difficult to describe. Sometimes it feels a little like neuropathy, with burning, tingling, and a weird combination of numbness and over-sensitivity, but other times I have strange sensations that I can’t quite describe. It feels like some kind of pressure on my nerves. Sometimes it even feels like parts of my body are caught in a vice, like something is tightening around my nerves. My muscles also feel really wonky, like they've been stretched out way too far. But when it's improving, I also feel this "soothing" sensation in my nerves and all my symptoms start to get better. I haven't found a very good explanation for any of this.

If they tested you for those 11 autoantibodies, it makes me think that your ANA Titer came back positive which automatically triggered the next step of testing for those autoantibodies (vs. if your ANA Titer had been negative, they would have stopped at that point w/that blood sample). I don't know that for sure but that is often how labs process ANA titers (in the US).

Do you know if your ANA Titer was positive and if so at what level and pattern? It could still be worth testing for other autoantibodies that can affect neuromuscular issues such as paraneoplastic autoantibodies (just to rule this in or out).

I can't find any evidence one was performed, but I could ask about it in the future.

 

[npeden]

Thanks everyone for the help. Since my last posting I've gained some additional clarity on my condition. I have continued to experience some tentative improvements since taking the supplement formula even at half of the recommended daily dosage, but what has really helped the situation is a new medication intended mostly for fibromyalgia. It's called savella. Apparently it works by affecting the reuptake of certain neurotransmitters, but it's not clear at all to me how my neurotransmitters could have been a problem, unless it is a synaptic issue. @Violeta Did you have any more information about what you mentioned in your post? It may take another few weeks or even months to fully confirm how well it works though. I did have reasons to believe that immune dysfunction may have played a role, because my immune system appeared to overreact badly to the COVID vaccine (terrible chills, cramps, fatigue, hot flashes, paresthesia, deep sleep), but it's hard to tell which way causality goes.

Sorry, I didn't mean it was a language barrier, I just mean that the neurological problems are very difficult to describe. Sometimes it feels a little like neuropathy, with burning, tingling, and a weird combination of numbness and over-sensitivity, but other times I have strange sensations that I can’t quite describe. It feels like some kind of pressure on my nerves. Sometimes it even feels like parts of my body are caught in a vice, like something is tightening around my nerves. My muscles also feel really wonky, like they've been stretched out way too far. But when it's improving, I also feel this "soothing" sensation in my nerves and all my symptoms start to get better. I haven't found a very good explanation for any of this.

I can't find any evidence one was performed, but I could ask about it in the future.

I have at 73 developed what may be fibro. As I am MTHFR c667t I take very few pharmaceuticals. This has helped greatly: Source Naturals Magnesium Malate, recommended by a geneticist AND I added as I believe I am low in sulfur, MSM. I was taking the combo several times a day.

I have a friend in biochem who pushes melatonin. I cannot take it and it is in my genetic charts. Makes me VERY depressed. Recently I found some NIH and a product I am trying that is a precursor to melatanonin and I believe tryptophan: 5 htp. I tried this brand last night and did not wake in pain especially in my knees. Like I say there are NIH papers on 5-htp and fibro. I KNOW thru testing serotonin which is what 5-htp makes is my lowest neurotransmitter. I am not 100% but for a first night I was impressed. The company I use does not mention fibro but I trust my research: https://www.seekinghealth.com/products/5-htp-extended-release-30-tablets?variant=19211360796790

 

[Wishful]

that is a precursor to melatanonin and I believe tryptophan: 5 htp.

TRP is the precursor to 5-HTP.

For me, TRP made my ME symptosm worse, but 5-HTP didn't. Most (95% IIRC) TRP in the brain goes down the kynurenine pathway rather than the 5-HTP->serotonin->melatonin pathway.

 

[cheeseater]

The most abundant free form amino acid found in muscles of the body is Glutamine. In the brain, glutamine is converted into glutamic acid--which is essential for cerebral function--and vice versa.

Glutamine can be purchased as a supplement in pure (powder) form. I used it for decades in a battle with GI problems. Worked wonders.. Lots of uses. It is used by body builders as well as people sick with wasting diseases.

 

[npeden]

TRP is the precursor to 5-HTP.

For me, TRP made my ME symptosm worse, but 5-HTP didn't. Most (95% IIRC) TRP in the brain goes down the kynurenine pathway rather than the 5-HTP->serotonin->melatonin pathway.

Trp if you mean tryptophan is NOT an 5 htp precursor. I was wrong. Check me. 5 htp is I believe precursor for serotonin which is my lowest. It is also connected to melatonin. I can't take pharmaceuticals. Seeking Health has a new extended release 5 htp. I'm trying that. Not perfect but helps a lot. There seems to be little research on how 5 htp helps fibro. The sevalla sounds good.

 

[BrightCandle]

Trp if you mean tryptophan is NOT an 5 htp precursor. I was wrong. Check me. 5 htp is I believe precursor for serotonin which is my lowest. It is also connected to melatonin. I can't take pharmaceuticals. Seeking Health has a new extended release 5 htp. I'm trying that. Not perfect but helps a lot. There seems to be little research on how 5 htp helps fibro. The sevalla sounds good.

Tryptophan is a precursor to 5-HTP, but for quite a while the research has shown a problem in this area where most of the Tryptophan is being processed into Kynurenic Acid or getting stuck as Quinolinic Acid. We aren't getting as much NAD+ from Kynurenine as we should or 5-HTP either. The itoconate shunt videos and I thin Ron Davis' Tryptophan trap videos go into great detail about what can be seen in this process and theories as to why its misdirected.

What it means is taking Tryptophan is unlikely to help you with Sertonin and Melatonin and I have found I need to supplement the later. I did for a time use 5-HTP and I found that quite useful especially for sleep but I don't seem to benefit as much anymore from it.

https://i1.wp.com/www.geneticlifeha...s/2019/08/Tryptophan.png?resize=662,542&ssl=1