DionneT

Member
Messages
11
Type of diabetes
Other
Treatment type
Diet only
Hi @J_Eicher,

Insulin increases immediately when carbs are consumed - in a non-diabetic person levels peak at around 45-60min after a meal and begins to go back to baseline after that (it pretty much mirrors the blood glucose peak). So if your symptoms start to tail off around the one hour mark that is when both glucose and insulin have peaked and are on their way down. My numbness/burning doesn't disappear so quickly, once it is triggered it hangs around and is often followed by muscle spasms that can last for days.

23andMe doesn't sequence your whole genome - only a select number of 'SNPs' ; regions where the code commonly varies between people. Many genes have multiple SNPs identified and most of these are not identified as disease-causing, they are just natural variation. So when looking at mutations in a gene it is important to research the actual SNP (the rsXXX) to see if it is associated with disease. Most of the major SNPs associated with periodic paralysis (and many other rare diseases) are not covered by 23andMe at all, so it wasn't much help in my case! The two possible SNPs that I did find of relevance are rs623011 and rs312691, I am homozygous for the risk alleles of these. They are near to the potassium channel gene KCNJ2, and these particular SNPs are linked to periodic paralysis in the literature but are not diagnostic as they are fairly common (~10% of people are homozygous for these mutations, so they might contribute some but there must be more to it). I just got a bargain on whole genome sequencing from Dante Labs so hopefully will have a lot more data to play with in a couple of months!

My potassium meter is a Horiba Laqua, not ideal as they need quite a lot of blood! Much more than a finger prick glucose meter. You also have to be really careful not to squeeze your finger to get more blood, as squeezing will break cells and you get a super-high potassium reading because you are seeing intracellular as well as serum K.

In terms of triggers for the onset of this, I had a run of viral infections winter 2016, a sinus infection and two different antibiotics Feb 2017 which is when I started going numb, lots of muscle spasms and weakness and I ended up in hospital for a week. I had MRI, lumbar puncture, so many blood tests, but nothing was found to be wrong with me apart from the common cold virus! They initially suspected MS, then Guillain-Barre syndrome, then it was just decided to be 'post-viral neuralgia'.
I have a history of epilepsy, and had been in hospital in 2004 with what the doctors considered to be a drug reaction when my medication was changed. But looking back, the symptoms were very much the same. Luckily I recovered just fine from that and had no major health issues until 2 years ago.

@ChetRoi that's fascinating about the Berberine! I have some arriving tomorrow, I'll report back...
 

J_Eicher

Newbie
Messages
4
Hi @DionneT

I checked with my husband, and he said he checked those SNPs - I also only have one heterozygous mutation there.

Ah, I thought insulin took a bit longer than that to kick in. Maybe I should consider redoing the OGTT again then, but demand insulin measurements at each interval - which they failed to do as I'd requested the first time, gah! I have my own BG monitor at home, so I knew my sugar was fine... it was the insulin sensitivity that concerned me (and still does). Also, re my symptoms, I'm never without the sensory issue, but it goes from a non-painful tingling/crawling, to feeling like I have a cheese grater running over my skin, and a million ants biting me (upper thighs are excruciating). The spasms/cramps and twitching are on and off for me (they seem unrelated to the other flare-up patterns), and come and go as they please, but they're not severe.

Hmmm, I've heard of a few people struggling with viral infections prior to onset. There are some suggestions in the literature that viruses like HSV/CMV/EBV can migrate to peripheral nerves and remain active there chronically, but it remains contentious. Have you had viral PCR done to check for active viruses?

You mentioned antibiotics... not fluoroquinolones like ciprofloxacin (Cipro), levofloxacin (Levaquin), moxifloxacin (Avelox) by any chance? Those are well-known nerve destroyers. @ChetRoi I noticed that you mentioned regular antibiotic use as well. Again, it might be worth doing a stool analysis to check for dysbiosis as well (both of you), as this is commonly triggered by antibiotics, which can lead to lipopolysaccharide toxemia and other gut-related pathologies. Just throwing some ideas out... you never know. :)
 

Cheryl11

Newbie
Messages
1
Hi @ChetRoi and @DionneT ! I came across both of your postings today, and was wondering whether you've made further progress in terms of your diagnoses.

I'm a 28-year-old woman with no other health problems (no diabetes or autoimmune disorders), and have struggled with small fibre neuropathy for a year now (still only sensory impairment at this stage, without motor involvement). About 75% of my body is affected. I also have awful fatigue, as well as recurring unexplained tendon/ligament issues despite being mostly inactive (I used to be a runner, but have been unable to exercise much over the last few months, due to these issues).

Like you, I seem to have some kind of difficulty in metabolising carbohydrates, or high GI meals. Ever since the neuropathy started, I would get severe postprandial flare-ups that perfectly correlate with my blood sugar levels. The burning (not numbness) will start increasing about 10 minutes after eating, peak at around an hour, then plateau, and drop off after 1.5 hours or so. Essentially, as soon as insulin kicks in, the symptoms get better. I've basically investigated everything under the sun, and no one can provide me with an explanation (I also had the OGTT done - all normal). Doctors think I'm mad, when I say that eating causes these symptoms.

Like others, I've recently adopted a keto diet, which is the only thing that alleviates my symptoms. I've also cut out all food allergens since Feb 2018 (all grains, dairy, gluten, sugar, soy, corn etc etc) without significant improvement. I feel my best on keto, or when I'm fasting entirely. At the same time, I'm trying to ascertain whether the actual damage is being caused by the carbs/blood sugar spikes, or whether that's simply the damaged nerves momentarily reacting to changes in environment (I.e. sensitivity to BG increases, and not to carbs per se). I've come across a few people who know the cause of their neuropathy (including Hashimoto's disease and chemotherapy), who also say that BG spikes of any sort will exacerbate their symptoms, even though BG isn't causing the damage. So that's worth considering.

What I do know for sure, is that my neuropathy was triggered by a fairly major dietary change. I was very restrictive with my diet for five years (to be fair, it was a moderate eating disorder) and I lost about 12kg. During that time, I was in peak health, and barely even got a cold. I never had any of the above symptoms, and had no nutritional deficiencies. Once I came to my senses and started trying to regain weight rapidly, all of this started, and nothing has been successful in stopping it. Alpha lipoic acid and B12 have a minimal effect.

Current theories are intestinal permeability (aka leaky gut), and I have just had a stool analysis identifying major gut dysbiosis (but not SIBO). The immunologist said that this might be causing lipopolysaccharide toxaemia (look it up). I'm having further tests to verify leaky gut (urine and serum), as well as to check for lipopolysaccharide antibodies, which would confirm this diagnosis. Most conventional practitioners aren't knowledgeable about things like leaky gut, but it's certainly a major cause of 'idiopathic' conditions like these. I'm truly hoping that this is the case with me... I worry that my years of caloric restriction and limited carb ingestion somehow permanently messed up something in my endocrine system.

Please let me know regarding your progress.

Regards,

Jana
Hi Janal,

Have you ever find out the diagnosis of your numbness to carbs and sugar? I have been having pins and needles in feet, bone pain, numbness, flushes across legs each time after I take carbs or sugar. Sometimes throughout the day, the tingling sensation comes and go.

I did a fasting blood glucose test and value is normal. I’m just wondering have you ever find out what is happening to you? Every doctor that I went to tell me they have not heard of such symptoms and I’m really worried.

Hope to hear from you soon.

Thank you.

Cheryl
 

Nmori

Newbie
Messages
4
Has anyone considered that the mechanism for the numbing response is due to inflammation?

I will post my details in the older thread which I can’t seem to link here. It’s titled - Numbness after carbs sugar
 

catinahat

Well-Known Member
Messages
3,386
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Reality tv
I will post my details in the older thread which I can’t seem to link here

Hello @Nmori welcome to the forum
You will need a few more posts under your belt before you can add any links, it's a rule they have in an attempt to discourage spamming