NeuroTalk Support Groups - New member with rapidly worsening peripheral neuropathy

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- - New member with rapidly worsening peripheral neuropathy (https://www.neurotalk.org/new-member-introductions/255955-rapidly-worsening-peripheral-neuropathy.html)

Welcome scared 49. :welcome_sign:

thank you!
i wonder if atticus will read my post? i didn’t know how to reply to one of his posts so he would see. i was only able to reply to the thread.

Quote:

Originally Posted by scared49 (Post 1298551)

hi atticus,

i have been reading and reading on this forum about alcohol neuropathy and keep coming back to your comments and your knowledge about it. i’ve been scared to write anything, but today, the tingling and pins and needles are so distracting, i decided to reach out.
my symptoms started about a month ago. tingling in both feet and hands, occasional numbness on bottom of feet, toes, and fingers, sharp electrical like stabbing sometimes when i walk on bottom of foot, only lasts a quick second, feels like my toes are crammed in shoes like there’s something there, feels like i’m stepping on a rock or pebble when nothing is there. i can walk no problem, my hands and fingers are mobile, i have strength in legs, feet, hands and arms. but the pins and needles feeling throughout my body and the constant tingling in feet, legs, arms and hands is scaring me. i went to the doctor 3 months ago for a routine blood work, my triglycerides were pretty high at close to 400 ( i am small and weigh about 42kg) so the doctor advised me to cut bad carbs. which meant no white bread, pasta, sugar, alcohol, etc. my last drink was 11/25/21 (thanksgiving day). i thought i was a social drinker but i have read otherwise. i have had at least 2 glasses of wine every night for the last decade. on weekends and parties, i would have more… maybe 3 glasses and sometimes a shot of something.
i think it was way over the daily or weekly limit especially for my small build. my symptoms of neuropathy did not start till about a month ago. never had any symptoms except for my 2 small toes going numb maybe once a month or so. did not think anything about it since feeling would come back after half hour or so. my full on neuropathy symptoms started roughly 2 months after ceasing alcohol. and it’s rapidly getting worse. it’s like i’m having a new symptom that appear daily. sometimes i feel great, and have no symptoms for several hours, then it comes back and it reminds me. i am not debilitated, i can walk and do daily things, but the feelings of pins and needles, numbness, and sharp stabbing like pain is not normal.

i have taken your and mrs d’s advice and started the following with some extras i have already been taking for years…

womens multi vitamin
stress b complex
methylb12 1000mcg (started yesterday)
benfotiamine 150mg with 300mg ala (started yesterday)
vitamin c 1000mg
fish oil 1000mg
probiotic
turmeric 1000mg
milk thistle 500mg
digestive enzymes
vitamin e 400iu
vitamin d3 2000iu,

my question is, do the symptoms really get worse before it gets better? why didn’t i have any of these symptoms post ceasing alcohol?
i am scared and really need to know it will get better. i have read you saying distract by reading and watching tv, i have been doing that and it really helps. but sometimes when the tingling is constant, i can’t help worrying and my anxiety kicks in. thank you very much for reading. you and mrs d have been tremendous help.

sacred49

Scared49: You seem to be taking a lot of recommended supports but I don't see Inosine or Spingohlin in your list. I have talked about these 2 and how they both helped my issues and Inosine for sure.

And as I mentioned to another newbie who mentioned side effects from the "jabs" for covid, I seconded those thoughts. I'd wager most here have done the jabs, and I have not.

Quote:

Originally Posted by scared49 (Post 1298551)

Hey Scared,

First of all I wanted to say that Mrs D was this website's greatest contributer, a genuine researcher who attended conferences and read widely. My knowledge is far narrower and based on personal experience mostly.

I hear your pain, I feel your anxiety. I understand what you are going through is horrible. It's awful. It seems to me that it's the anxiety that you need to deal with most.
Alcohol is a great relaxant. It acts as a sedative and can take your mind off life's problems. Alcohol increases the activity of the neurotransmitter/modulator dopamine in the brain that makes us feel good. It's those feelings of eurphoria that makes us want to reach for another drink. I dare say your brain/body are missing those feelings.

I would suggest that if you can learn to meditate and ideally join a meditation class you can generate relaxation and healthy feelgood dopamine. It will allow your body to heal that much quicker. Our nervous system comprises a sympathetic nervous system ( fight or flight) and a parasympathetic nervous system ( rest and digest). In times of stress the sympathetic nervous system dominates. The body is a great healer and will heal more rapidly in a relaxed state. Learn to relax. Join a meditation class. Discuss your anxiety and symptoms with friends/family. Don't keep your feelings secret. Let them help you. Walk everyday. Get outside and experience morning sunlight. Breathe.

It's important not to catastrophize.

My own symptoms peaked during lockdown. Although I went through the same terrors you describe, I also felt a sense of peace because I was able to give up my responsibilities and really rest. It was sunny and I used to fall asleep outside regularly listening to YouTube relaxatation videos. I slept a lot. I entered a short play competition and won. They finally performed it, after several cancellations, earlier this year. It was genuinely terrible! But the point is I was able to focus on something and that sense of achievement of task completion helped me. ( Again feel good Dopamine release)

Do you have a hobby you can really focus on?

In my experience and in others I have read of, the usual pattern of recovery is that the symptoms get worse before they get better. I believe the body starts regenerating demyelinated nerve fibres typically a month or so after cessation. B12 helps with this. It's a slow process so be patient. I would add Magnesium Threonate to your supplements. Take it in the evenings and it will help you sleep and ease anxiety.

You don't say if you have sought medical help. Are you self diagnosed?

Best wishes

Atty.

Quote:

Originally Posted by caroline2 (Post 1298574)

thank you so much caroline2,
i did not know about sphingolin or inosine. please tell me know how many mg to take daily. what do you mean by “jabs” for covid? thank you🙏🏻

Quote:

Originally Posted by Atticus (Post 1298580)

thank you very much for your reply atty,
i was not sure if my post would reach you and was so happy to see your reply.
i forgot to mention i am taking magnesium 200mg, but not magnesium threonate. is there a difference? i will get that today if there is a difference, and please let me know how many mg to get. also, do you know much about sphingolin and inosine as mentioned by caroline2 above? i am planning on getting those today.
i have been meditating and going for hikes for 3 months every other day since ceasing alcohol, but my neuropathy symptoms did not start till about a month ago (8 weeks after no alcohol). i will continue my daily hikes/walks and meditation as it does distract me. when i do walk/hike, my tingling in my feet and hands are quite noticeable and so it reminds me that something is not right.
i am seeing a neurologist and see her again next week to go over my labs.
i received my labs yesterday from labcorp and made the stupid mistake of researching my abnormal results.
my immunoglobulin A is high (she was testing me for celiac disease), which google says could be cirrhosis😢 so got scared. but all my labs pertaining to my liver is all within normal range. my ast, alt, alp, ggt, albumin, total protein, globulin, bilirubin, albumin/globulin ratio, bun/creatinine ratio all within normal range. my ct, ultrasound was all normal. my fibroscan was 9.8 cap 249. my gastroenterologist said it was mild scarring and no sign of fatty liver and is reversible given time. he wants to do another fibroscan in a year. i am eating quite healthy, exercising, cut all bad carbs/sugar due to my high triglycerides and of course, no alcohol for 3 months now.
my b6 was also elevated, but said could be the cause of taking vitamins 24 hours prior to testing. my b12 was within range at 880.
my thyroid came back abnormal. don’t know yet if it’s hypothyroid or hyperthyroid. did not know how to interpret the result.
all other tests were normal that she tested for.
i know i am doing all the right things by making healthy choices, but the tingling, pins and needles, and sharp stabbing pain reminds me daily.
i really appreciate your and everyone’s replies/suggestions and really glad to have found this forum.
by the way, congrats on winning the short play competition you entered! way to go!

Jabs as many call them are the shots for this covid.

The directions are on the bottles of Inosine and Sphingolin, and Pure Formulas carry them both. Do some research on them

And probably Amazon as well, but I try not to shop Amazon.

Quote:

Originally Posted by caroline2 (Post 1298586)

oh gotcha, ok, thought the “jabs” that you mentioned were symptoms of getting vaccinated. i got 2 pfizer vaccines and also boostered so thought maybe it was the side effects from that so got scared.
i will research how many mg of sphingolin and ionine to take and go from there.
really appreciate you taking the time to reply. thank you🙏🏻

Quote:

Originally Posted by scared49 (Post 1298590)

i will research how many mg of sphingolin and ionine to take and go from there.
really appreciate you taking the time to reply.

Hi scared.
Don't be scared.

I just wanted to extend a "welcome" and also a suggestion that you can use the forum search feature for all the past threads and posts regarding Sphingolin in particular, before you buy it. I wouldn't take it for my peripheral neuropathy, but I know a few here have tried it.

You have probably found it already, but here is the link below to the forum search feature...
https://www.neurotalk.org/search.php

Welcome, scared39!

You're taking quite a few supplements. I hope you've studied up on just what they do and don't do, and how they might interact with one another.

I am very hesitant to take any medicine or supplement, especially for any neurological problem. And the older I get, the more cautious I am. Sometimes doing nothing and even cutting out one or two drugs or supplements can solve a lot of problems.

Also, you might want to look into your diet. There might be a nutrient you need, or a nutrient you're getting too much of. A dietitian or nutritionist can be useful.

Congratulations on cutting out the alcohol. That's not an easy battle but it sounds as if you've been winning it.:)

Quote:

Originally Posted by caroline2 (Post 1298586)

thank you caroline,
will research to see if i should take them.
right, amazon is a bit scary to buy supplements. don’t know exactly where they are manufactured and coming from.

Quote:

Originally Posted by Lara (Post 1298592)

thank you lara,
will read up on sphingolin to see if i should start taking it.
appreciate your advice.

Quote:

Originally Posted by agate (Post 1298593)

thank you agate for your suggestions. you’re right, i will look into a nutritionist to see about continuing all i’ve been taking. never thought of that. it did scare me a bit when my b6 was quite high. appreciate it!

Great to see an active thread. So often I have taken the time to research and post answers to see no replies. It would be good to get feedback and updates from the people who start these threads.

Scared,

Great to see you have made positive changes in your life. You are well on the way to recovery.

I take Magnesium Threonate because it helps with sleep. It is also able to cross the blood brain barrier and is beneficial for brain health. See references below. I take 200 to 300mg a day. However in terms of PN probably has no advantage.

Magnesium L-threonate prevents and restores memory deficits associated with neuropathic pain by inhibition of TNF-α - PubMed

Magnesium threonate: Benefits, side effects, dosage, and more

Thinking of Agate's wise words, and as you probably know, excessive B6 is known as a cause of PN.

[How much vitamin B6 is toxic?] - PubMed

I heard David Sinclair on a podcast recently saying that pulsing supplements may be more effective means of taking them, that is taking supplements every other day. I certainly think a rest from them is a good idea from time to time.

You have to remember Scared that there will be people reading your posts that would dream of having your level of symptoms. As disconcerting as they are, here's a thought, what if you thought of them as trivial? In my experience I just became bored with noticing tingling and shooting pain. They are not life changing. As soon as you realise that, you are in control and you can get on with the rest of your life. A simple NLP technique is to replace what you have in your mind when you notice a shooting pain with an image of something funny. Confuse the pain.

If there is an upside to aclohol induced PN it is the joy of getting better. If you remove alcohol from your life, this will inevitably happen. You take away the cause of PN eventually your body will heal. You have to be patient. You're only 3 months or so in. You will be okay. You will get through this.

Best wishes,

Atty

thank you so much atty,
your posts of staying positive with distractions has helped me quite a bit. i need to be in control of my mind and must not allow the issues to control me. i panicked and went overboard taking new supplements trying to fix the discomfort, but in actuality may be an overload of vitamins and minerals i don’t need. what’s strange is all the b6 i’ve been taking combined does not exceed 50mg a day but was high in my labs. so maybe i am getting enough from what i’ve been eating? i have been eating very well. keeping things in moderation is my new goal and see where it takes me. onward and upward!
thank you so much.

I don't drink at all, but anyone can get peripheral neuropathy. It happened to me after a revision surgery on my right foot where the surgeon didn't use a nerve block. As a result, I have numbness and pain in toes and metatarsals which travels up leg (sural nerve). It's ruined any walking, and now is affecting the other foot. Waking up with burning pain in heel, and big toe infrequently.
I've been to a pain specialist who prescribed pregabalin, and morphine patches, but these only mask the symptoms - they don't CURE it. So WHAT does?

Welcome, Sooze56!

You don't mention how long ago you had the revision surgery. I understand that healing after such surgery can take up to a year.

Though I have no answer to your question, I hope that you have found a good doctor who can come up with some helpful suggestions. I myself would favor a doctor who takes a conservative approach--recommending solutions other than more surgery, for instance.

I have come across the term "Coasting" with respect to Neuropathy.

This describes the experience of symptom progression before gradual improvement after the cessation of alcohol. This is known as coasting and is encountered in other toxic neuropathies.

Alcoholic neuropathy: possible mechanisms and future treatment possibilities - PMC.

This paper uses the term in the opening paragraph and offers excellent insights in supplementation.

Welcome Sooze56. :Tip-Hat:

The numbness is making typing difficult as opposed to lack of coordination or something

If you haven't already checked into this, it would be a good idea to make sure no medicine you've been taking might be contributing to your problems. Often something we're taking, something that is helping some condition, turns out to create other problems in surprising ways.