mrsD-
thanks again for these links.
I will check in on the member's posts.

The link for myopathies is a great resource!

I have had extensive work-ups over the years, including nerve biopsies, etc. I have sensorimotor axonal PN and other conditions - autoimmune in nature - and have had these for many years.

In the past 3 years, I have started to show more clear signs/symptoms of an additional neuromuscular condition. Neurologists had witnessed it first-hand in the ER when I had been admitted to the ER one night. Lucky for me I could see a neurologist to the ER -- That came about by my telling the Attending P.A. I refused to leave the ER until I saw a neurologist, even though the PA had already written my discharge note. After a short, yet intense debate, I saw a neurologist. The Neurology resident recognized the neurological involvement and the need for assistance within 5 minutes of witnessing the signs, which were profound by the way. (No idea why the PA could not see anything wrong. Since electrolytes were fine, he wanted to discharge me. I could not walk, could not use my hands, etc.)

We've done more testing including repeated EMGs, NCVs, labwork (including repeated paraneoplastic panels). I have seen a specialist in Muscular Dystrophies. A few MD neurologists have consulted and they all suspect a "myotonic dystrophy." We will be doing DNA testing soon.

I am being treated for "myotonia" in addition to being treated for PN and other autoimmune conditions.

Thanks again, mrsD. I deeply appreciate your insights and your kind assistance.

To Our healing!
Deja Vu

So which taurine brand would be the best? I usually just drink a monster energy drink and that is fine, but sometimes I don't want the caffeine or sugar. I tried Now formula, but they have stearic acid and it doesn't go down right.

Jarrow has magnesium stearate and one formula is pretty expensive for 200 capsules it's $50 on amazon.

I've been taking Spring Valley brand taurine supplements (1000mg). I'm not sure how good they are, since my pain is still just as severe as always (newly diagnosed; my pain started during Nov '19). I also take 250mg magnesium and 200mg turmeric (because I misread the label and thought it was taurine, but I don't like to waste things...) to try to help manage the pain, with no benefit.

Hi archippos

Welcome to NeuroTalk .

I am sorry to read about your trigeminal neuralgia; I hope that other members will be able to offer you support and good ideas.

You can also use the Search option (https://www.neurotalk.org/search.php) to find threads here which could help you.

All the best.

You may NOT be taking enough Taurine. Most amino acids I've taken over my years says 1000mg 3 times daily.

Recommended Dosage of Taurine | Livestrong.com

Start taking more daily and see, start with 2 daily and then 3 and see, also amino acids need to be taken away from foods.

Also your other 2 supplements you take are low doses. Again we have to experiment with our bodies..I take far more magnesium daily and on the turmeric I take at least 500mg daily and some days I take 2. I've been taking supplements for a LONG time and learn to work with them for me.

I've been working on being my own doctor on my health for many yrs. And if one takes pharma drugs, good to check on interaction issues.

I'll certainly start increasing my dosage of taurine and magnesium, then. I'll probably start taking both of them morning and night and see how that treats me. Do you feel like the turmeric supplements actually help? I didn't buy a new bottle after finishing the one I'd accidentally purchased.

My neurologist didn't seem concerned about the supplements I was taking, but since I'll try increasing the dose, I'll ask her about any possible interactions between them and the Tegretol she prescribed me.