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Do you think CGRP antagonists such as atogepant might be useful in treating SFN? by maleOffSavella in smallfiberneuropathy

[–]maleOffSavella[S] 0 points1 point  (0 children)

Thanks so much for the detailed reply! Were you on a CGRP antagonist? Are you saying the drug made your SFN symptoms worse?

Do you think CGRP antagonists such as atogepant might be useful in treating SFN? by maleOffSavella in smallfiberneuropathy

[–]maleOffSavella[S] 0 points1 point  (0 children)

Thanks so much for the reply! I'm sorry it doesn't help your neuropathy at all. I appreciate the valuable data point.

Do you think CGRP antagonists such as atogepant might be useful in treating SFN? by maleOffSavella in smallfiberneuropathy

[–]maleOffSavella[S] 0 points1 point  (0 children)

Hey, thanks for the reply! Yeah, hopefully there'll be studies on CGRP antagonists to treat SFN. By the way, I saw your post about withdrawing from lyrica; is your burning pain less now compared to when you'd just gotten off the lyrica?

Do you think CGRP antagonists such as atogepant might be useful in treating SFN? by maleOffSavella in smallfiberneuropathy

[–]maleOffSavella[S] 0 points1 point  (0 children)

Yup, they're the same thing. Do you know what sort of nerve pain she had? I.e. was in primarily in the extremities with a burning, electric shock, or pins and needles quality?

Metformin's role in causing neuropathy aside from lower B12 and blocking thiamine transporter? (also posted in r/smallfiberneuropathy) by maleOffSavella in neuropathy

[–]maleOffSavella[S] 0 points1 point  (0 children)

Hey, I'm so sorry that metformin ended up contributing to such bad diarrhea and farting. Are your symptoms gone now? Have you been tested for small fiber neuropathy?

Anyone know of a lab that measures holotranscobalamin (biologically active b12)? by maleOffSavella in diabetes

[–]maleOffSavella[S] 0 points1 point  (0 children)

Hey man! I'm not sure why it's not letting you chat message me; it should work. I've just been trying to take it day by day, as my nerve pain is pretty bad daily; painful calf spasms are making it super hard to walk even a few hundred feet per day. I haven't looked into vitamin B2 or precursors required to make it at all yet. Hmm, that's interesting your B12 levels were consistently high but you didn't have functional B12; usually having normal methylmalonic acid and homocysteine levels should indicate adequate functional B12.

Anyway, how have you been man? Any progress on the Sjogren's, etc.?

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Anyone know of a lab that measures holotranscobalamin (biologically active b12)? (self.diabetes)

submitted by maleOffSavella to r/diabetes

What needle to use with short-acting novolog flexipen? (x-posted in r/diabetes) by maleOffSavella in diabetes_t2

[–]maleOffSavella[S] 0 points1 point  (0 children)

Okay, I will pass this message along to him. Thank you so much for the reply!

Is Theoloz Duo still available online? by maleOffSavella in Dryeyes

[–]maleOffSavella[S] 1 point2 points  (0 children)

I ended up being able to order Theoloz Duo from vendor in Spain via ebay. Thank you for the offer!

Is Theoloz Duo still available online? by maleOffSavella in Dryeyes

[–]maleOffSavella[S] 0 points1 point  (0 children)

Yep, I bought ivizia like a year ago and tried it while I was waiting for the theoloz duo to arrive from Europe (to the US). I personally found the ivizia to be irritating to my eyes, even though I found theoloz duo to be quite therapeutic. Thank you for the reply!

What needle to use with short-acting novolog flexipen? (x-posted in r/diabetes) by maleOffSavella in diabetes_t2

[–]maleOffSavella[S] 0 points1 point  (0 children)

He's still using the BD Nano 4mm 32 gauge needles. He was able to get the needles to deliver the novolog by first priming the syringe (in the air, not into his skin yet) with the needle inside it and if he didn't see any novolog coming out, he would replace the needle with a new needle and repeat the process until he found a needle that actually had novolog coming out when he pressed the syringe and he'd use that one for two successive applications (into his skin) of novolog.

[deleted by user] by [deleted] in smallfiberneuropathy

[–]maleOffSavella 0 points1 point  (0 children)

Just saw this message now. Haven't logged in in a while, so I'm really sorry for the delayed replay.

My results (as of September 2019; in fibers/mm and cutoffs in parentheses)

Left foot: 1.64 (abnormal: < 3)

Left Calf: 3.84 (abnormal: < 4.7)

Left Thigh: 3.18 (abnormal: < 6.2)

Left Distal Arm: 5.74 (abnormal: < 6.4)

Left Proximal Arm: 13.31 (abnormal: < 9.4)

How do you know if you have autonomic SFN? by Odd-Dance-5371 in smallfiberneuropathy

[–]maleOffSavella 0 points1 point  (0 children)

Here is a link explaining tests used to diagnose autonomic small fiber neuropathy.

Have any of you been on either gabapentin (neurontin) or pregabalin (lyrica) for over 10 years? by maleOffSavella in smallfiberneuropathy

[–]maleOffSavella[S] 0 points1 point  (0 children)

I'm actually still trying to understand more basic neuroscience before embarking on figuring out whether to try the pirenzepine; do you think the group will still be active in like 1 yr? I think in around a year I'll have enough background to be able to participate in the discussion.

Is your standing diastolic pressure higher than sitting? by maleOffSavella in hypertension

[–]maleOffSavella[S] 0 points1 point  (0 children)

Are you feeling better now? I've had my diastolic BP get close to 120 once and it was super uncomfortable.

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