Can I ask what your age is? And your current diet?
Can I ask what your age is? And your current diet?I have some new information that may be helpful to some. My own condition has progressed to the point where I’m now in a wheelchair. My prior polyneuropathy has progressed beyond peripheral nerves.
Although generally speaking, mild in nature, I have the symptoms now of slurring speech, swallowing difficulties, pseudobulbar effects, and now reduced lung function. Perhaps a hint of what’s to come.
But the data I wanted to leave with all of you is a recent discovery that I made. Over the past decade I have added for supplements that I found seemed to help in reducing the intensity of the post carbohydrate consumption numbness. In preparation for a visit with my neurologist, almost on a lark, I used the AI function on Google search. I gave the name of the four supplements I was taking, methylcobalamin, alpha Lipo acid, berberine, and magnesium to the search engine, asking what these four substances had in common. It came back with a single word: glutamate.
Further research enlightened me about the glutamate – GABA neurotransmitter balance in the body. I learned about the phenomenon known as excitotoxicity. This occurs when excessive levels of the neurotransmitter glutamate bind to neurons. As I recall in reading it some months ago, this starts a calcium cascade into the neuron starting a numbness andeventually killing it.
I do recall reading that there is a blood test to determine the glutamate level. Being in the process of changing neurologists, I have not yet had this test myself. But given the symptoms that I have had for the past decade and more with the apparent metabolic pathology of dysfunctional carbohydrate pathway processing, I may have hit on the root cause of my numbness after consuming carbs and the slowly progressive disablingdisease that I have.
Hope this helps.
Surprised to hear your age. For me it started when I was about 48yo and now I am 54yo so I had this for 6 years. I got significantly better after going almost zero carb, combined with API (autoimmune Protocol diet - https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet), not eating supermarket meat (I order my meat from a small farm). When I had more money I would also order wild salmon as well, delivered but I can’t afford that at the moment. I eat the cheaper parts of the grassfed cow - top/bottom roast and chuck. I bought a meat grinder. ‘Beef it’s what’s for dinner’ - every night. I feel like a caveman but unfortunately this is the only solution. It’s VERY expensive. On the upside I continue to fine tune my diet and my condition seems to be better overall but I have bad discipline and almost every day I screw up. I am certain if I had perfect discipline like some other carnivores (or light keto) I’d feel fabulous. I have felt fabulous before when I had the discipline.Hi Nmori,
Thank you very much for your response. I was a bit pessimistic to receive a reply considering the thread hasn't been active for some time now. Yes, you are right, our conditions are same. To add more context to mine, after eating anything starch, anything sweet (whether table sugar or sweetener, fruits, honey etc.) or even sweet vegetables like carrots, instantly within a few seconds, I start to experience pain in my leg, thigh and arm muscles and almost every joint especially my toes, knees, elbows and sometimes fingers. I also experience tingling mostly under my feet, but sometimes on other parts of my body. I experience some kind of numbness on my face, uncomfortable feeling. I also suddenly get very fatigued, intensely helplessly drowsy and experience pain in my shoulder blades, backbone, lower neck etc. The intensity of these symptoms depends on the glycaemic index of the food I eat, with table sugar, bread, sweet fruits like banana and rice being the worst. Last year, suddenly, taking salty foods give me same reactions as well.
Exercising the affected areas gives me some relief. Say for example, when I experience the pain in shoulders and backbone and do some push ups, it gets better. Or when I get the pains in my calves and knees and do some squats, it gets better. However, when I get these symptoms, I am usually not in the mood to work out at all but sometimes force myself to. Sometimes even working out doesn't work and I have to take a painkiller.
I have tried taking some Vitamins as I strongly believed it was linked to a Vitamin B1 deficiency when I researched, especially after watching Dr. Bergs videos. So I tried Thiamine and realized it helped delay my reactions from a few seconds to about 10-15 minutes. However, I noticed it introduced new symptoms like heightened pulsating feeling like a heartbeat under my feet and also some kind of formication like insects crawling over my body and the numbness in my face which I used not to have. So I stopped it and the reactions returned to happening immediately after ingestion of these culprit foods. I think the Vitamins I had probably had some ingredients that caused the new symptoms. I notice similar symptoms when I take even Vitamin B which makes me believe some of these Vitamins have ingredients that are probably culprits as well (like polydextrose, bulking agents, etc). Do you know of any Vitamin brands you could recommend which don't have some of these additives?
My blood sugar levels have been erratic for about 5 years now since this problem started. Sometimes blood test show I am prediabetic and other times not, although still the levels show to be high. I would say I have a slim build and only 29 years. Even now on a low carb diet, my blood sugar still shows high. I recently have a mixed meal test for hypoglycemia and was told my blood sugars rose after eating and fell low afterwards but my body regulated it it eventually and didn't continue producing insulin which they would have been worried about. My endocrynologist seemed to be OL after eliminating the concern that my body didn't continue producing insulin when it needed to stop. I still don't fully understand it but the Doctor couldn't explain the instant symptopms/reactions I get after eating these culprit foods.
At this point, I am left all on my own and struggling to work or even just have a normal life.
Hi @ChetRoiFurther research enlightened me about the glutamate – GABA neurotransmitter balance in the body. I learned about the phenomenon known as excitotoxicity. This occurs when excessive levels of the neurotransmitter glutamate bind to neurons. As I recall in reading it some months ago, this starts a calcium cascade into the neuron starting a numbness andeventually killing it.
I do recall reading that there is a blood test to determine the glutamate level. Being in the process of changing neurologists, I have not yet had this test myself. But given the symptoms that I have had for the past decade and more with the apparent metabolic pathology of dysfunctional carbohydrate pathway processing, I may have hit on the root cause of my numbness after consuming carbs and the slowly progressive disablingdisease that I have.
Hope this helps.
I take B12 with Thiamine supplements amongst others, this is interesting, can you post a link to this information so other members can check it out for themselves, thanksJust a quick note to say that Thiamine (B1) levels may be worth checking. It is involved in many processes in the body and affects nerve transmission and myelin, muscle contraction including heart, bladder function and leg function and cause foggy thinking. It can be low in people who don't eat wheat (ie are eating gluten free) who have digestive issues, and as we age. There also appear to be variability in genetics regarding the ability to create the enzymes for absorbing it, processing it, and storing it. It also appears that there are medications that inhibit its related enzymes and can result in a deficiency.
There are some controversy in the appropriate levels regarding deficiency, however some doctors say if in doubt treat because the consequesces of the deficiency can be significant including brain damage. Standard thiamine is water soluble, and stores for some people may be harder to retain, however there is a fat soluble form called benfotamine. Because benfotamine is fat soluble it is possible to overdose so follow professionals advice regarding dosages.
I have some new information that may be helpful to some. My own condition has progressed to the point where I’m now in a wheelchair. My prior polyneuropathy has progressed beyond peripheral nerves.
Although generally speaking, mild in nature, I have the symptoms now of slurring speech, swallowing difficulties, pseudobulbar effects, and now reduced lung function. Perhaps a hint of what’s to come.
But the data I wanted to leave with all of you is a recent discovery that I made. Over the past decade I have added for supplements that I found seemed to help in reducing the intensity of the post carbohydrate consumption numbness. In preparation for a visit with my neurologist, almost on a lark, I used the AI function on Google search. I gave the name of the four supplements I was taking, methylcobalamin, alpha Lipo acid, berberine, and magnesium to the search engine, asking what these four substances had in common. It came back with a single word: glutamate.
Further research enlightened me about the glutamate – GABA neurotransmitter balance in the body. I learned about the phenomenon known as excitotoxicity. This occurs when excessive levels of the neurotransmitter glutamate bind to neurons. As I recall in reading it some months ago, this starts a calcium cascade into the neuron starting a numbness andeventually killing it.
I do recall reading that there is a blood test to determine the glutamate level. Being in the process of changing neurologists, I have not yet had this test myself. But given the symptoms that I have had for the past decade and more with the apparent metabolic pathology of dysfunctional carbohydrate pathway processing, I may have hit on the root cause of my numbness after consuming carbs and the slowly progressive disablingdisease that I have.
Hope this helps.
What brand of thiamine or benfotiamine do you use? I tried both in the past and noticed that the thiamine delayed my reactions from seconds to about 15 minutes. However, it also introduced new symptoms like a sensation of spiderwebs on my face and insects crawling on my body, heightened pulses, etc. So I stopped as I believed I was experiencing adverse reactions. Perhaps a better brand of B1 would help me. The one I used in the past was from Holland & Barrett in the UK. Your suggestions would be much appreciated. Thank you.Just a quick note to say that Thiamine (B1) levels may be worth checking. It is involved in many processes in the body and affects nerve transmission and myelin, muscle contraction including heart, bladder function and leg function and cause foggy thinking. It can be low in people who don't eat wheat (ie are eating gluten free) who have digestive issues, and as we age. There also appear to be variability in genetics regarding the ability to create the enzymes for absorbing it, processing it, and storing it. It also appears that there are medications that inhibit its related enzymes and can result in a deficiency.
There are some controversy in the appropriate levels regarding deficiency, however some doctors say if in doubt treat because the consequesces of the deficiency can be significant including brain damage. Standard thiamine is water soluble, and stores for some people may be harder to retain, however there is a fat soluble form called benfotamine. Because benfotamine is fat soluble it is possible to overdose so follow professionals advice regarding dosages.
SureI take B12 with Thiamine supplements amongst others, this is interesting, can you post a link to this information so other members can check it out for themselves, thanks
The thiamine is just a generic available from our health system in my country. nothing special.What brand of thiamine or benfotiamine do you use? I tried both in the past and noticed that the thiamine delayed my reactions from seconds to about 15 minutes. However, it also introduced new symptoms like a sensation of spiderwebs on my face and insects crawling on my body, heightened pulses, etc. So I stopped as I believed I was experiencing adverse reactions. Perhaps a better brand of B1 would help me. The one I used in the past was from Holland & Barrett in the UK. Your suggestions would be much appreciated. Thank you.
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