New member with rapidly worsening peripheral neuropathy
 

Hello everyone. I'm new here, but have been lurking for a week or two and have learned a lot. Really appreciate the information and supportive environment.

I'm a 62 yr old lady, who began noticing a small area of numbness on the back of both heels about 7 weeks ago (early August). About a week later I began experiencing a strange numbness/ tingling body wide, along with lightheadedness. This frightened me so I went to ER. They did a CT of head, EMG, and blood tests (CBC, basic metabolic panel, hepatic function panel) all of which came back normal. The referred me to my primary care physician and advised me to see a neurologist. By the time I saw the pcp a week later, the numbness that started in the back of the heels was progressing towards the toes, particularly in the right foot. The pcp didn't do much, other than write up the referral. She did suggest b12, which I started taking.

I was able to see a neurologist a week later. He ordered the following blood tests: ESR, FTA/ABS, TSH, serum B12, folate) Blood tests came back normal. He also ordered an MRI w/o contrast, and performed NCS plus EMG of lower ext. left only. MRI results didn't show anything of significance. NSC/EMG indicated barely noticeable CV loss. Ordered glucose tolerance test, which came back normal.

Meanwhile, the foot numbness has progressed from a small area on the back of the heels to the top of the toes and towards the ankles, all in a matter of a few weeks. Also, my hands are more affected, as I am having increasing difficulty typing this. I wake up noticing changes, which has made sleeping very difficult.

Regrettably, I am a long time drinker, and fear that I probably brought this on myself. I have been drinking fairly regularly for about three decades, about 1-3 beers nearly every night. After noticing the numbness, I cut back and eventually quit over the month of August. Been alcohol free since Sept. 1. In spite of this, these numbness/tingling symptoms are getting worse and I've become an insomniac.

Appreciate any advice. Thank you all!

Welcome oldbat :yahoo: Someone may be able to help.

Kitt

Thank you Kitt. This condition really has me stressed out. It's been hard to sleep when you wake up feeling more numb each morning. I'm thankful for the support and knowledge base here.

It's more than likely the alcohol...there is a LOT of good support supplements in the PN section and I have found Inosine to help me a lot, my damage is from hip replacement surgery. Best to Stop the alcohol, you can do it... get to some AA groups if you can.

Hi oldbat,
Welcome! You're by no means an old bat.:D

Congratulations on cutting out the alcohol! That's surely going to help in the long run even if you haven't noticed any benefits yet. For one thing, beer has quite a few calories.

Since you've had quite a few tests without turning up any clues, have you looked closely at your activities lately?

What kinds of things are you doing for any length of time each day? What positions are you in? Do your shoes fit well? Might you be standing too much? Sitting too much? Sitting with your legs crossed too much? (That can cause problems.) Would you say you get enough exercise?

You mention that the problems came on in early August. Did something about your activities change at around that time?

I've had quite a few numbness and pain problems that cleared up like magic when I changed something about my daily activities. It's the things we do repeatedly and often that can bring on problems.

Thank you Caroline2 for the encouragement and advice. I'll have to check out Inosine and grape seed extract. Where do you purchase these and how much do you take?

I did quit alcohol and threw the leftovers away. Some of my drinking friends would have cried to see what ended up in the garbage! Today makes 20 days of no alcohol.

You have a new life giving up alcohol free, too sad so many don't. My father never experienced a clear mind....sad for sure.

I take 500mg Inosine daily, it's on the bottle how much to take. I usually buy it from PureFormulas on line as everyone does not sell....I believe Amazon does.

On Grape Seed Ex, people starting out probably best to buy 100mg capsules and take 1-2 daily and go from there. I've been taking it so long, my normal dose is 200mg....and lately buying a 250mg capsule from Now Foods.... One has to take enough for their bodyweight....

Also, hope you do not take a pharma blood thinner, can't take both....as they thin the blood.

Don't call yourself an "oldbat"... you are not that...

Regrettably, I am a long time drinker, and fear that I probably brought this on myself. I have been drinking fairly regularly for about three decades, about 1-3 beers nearly every night. After noticing the numbness, I cut back and eventually quit over the month of August. Been alcohol free since Sept. 1. In spite of this, these numbness/tingling symptoms are getting worse and I've become an insomniac.

Appreciate any advice. Thank you all![/QUOTE]


Good morning Bat,

I too have alcohol induced peripheral neuropathy and I am here to tell you one thing that happens with this condition. Against all expectations, after ceasing alcohol, Peripheral Neuropathy symptoms get worse. That's right, it gets worse before it gets better. But it will get better. Stick with it. I don't understand the mechanism. Perhaps alcohol has an anaesthetic effect? Things improve, slowly. The symptoms reduce. For me, my symptoms peaked at about 7-8 weeks after ceasing alcohol.

Pain, tingling and numbness are disconcerting, anxiety producing symptoms however they are great motivators when the inevitable wish of a beer comes to mind.

After a while I realised that my symptoms were not actually the end of the world I thought they were. They were actually trivial and instead of looking for them, I became bored by them. I naturally shut them off. Its easy to do this engrossed in a book or a film or a conversation.

Of course your sleeping patterns are disrupted, but that will soon right itself. Don't despair. I think you're able to buy melatonin over the counter in the USA. Consider that as a short term solution.

Anyway, I wish you well. Let us know of your progress.

Atty

Thank you agate for your suggestions and encouragement. When the numbness first began in the heels, I thought it might be due to the way I was sleeping with too much pressure against the heels from the mattress, so I added a cushion to elevate the heels. I read something about hereditary pressure palsies which can be short term or last for months, although no one in my family seems to have this. My dad did have "regular" peripheral neuropathy, which started in his 70s and gradually got worse. He didn't give up the beer and sweets, thinking it wouldn't make any difference anyway. I wish he had because his quality of life suffered, especially when the ulcers began on his legs and feet.

Thank you Caroline 2 for the encouragements and sources. I will check them out.

Thanks you Atticus. Your words are very reassuring. Day 21 and I have noticed that the dizzy spells, which seem to coincide with low blood pressure, are improving. My most concerning symptom right now is muscle wasting in the legs and arms, in spite the new exercise program I started back in August when this whole ordeal started. Did you experience any muscle wasting?

Hi Bat,

I switched to a whole food plant based diet that is very nutrient dense but not calorie dense so lost a lot of fat rather than experience muscle wastage. I take Creatine and lift weights regularly. Creatine helps boost muscle growth and has been shown to help regenerate peripheral nerves too. Weight training and stretching are for me keys to recovery.

Effect of Creatine on Rat Sciatic Nerve Injury: A Comparative Ultrastructural Study - PubMed

Hope this helps

Atty.

Sjogren's syndrome
 

Just received results back from a blood test for ssa, ssb. Sjogrens antibodies. Tests came back positive. Can neurological damage from this disease be stopped?

False alarm. The results were negative according to my rheumatologist. Still no diagnosis, although I didn't want this one (as if we can pick and choose!)

Hi, old bat! Like you I have just started feeling the symptoms of neuropathy, numbness, pain in feet, weakness, all, I believe the result of too much alcohol; since you haven't posted for a while I am wondering if you have noticed much improvement, especially since you have stopped drinking?

Welcome Mary Fitzpatrick. :Wave-Hello:

Hi Mary,
Unfortunately my symptoms have been steadily worsening, although I can still get around OK. It's been about 3 1/2 months without alcohol and I have no desire for it anymore, particularly considering the damage. I had one horrid doctor recently who berated me for drinking and told me that its only going to get worse. Some people have been lucky and able to reverse their neuropathy, but perhaps my alcohol consumption went on too long. Still hoping and praying for a miracle.

Oldbat: Beside all the other THINGS that can cause Neuropathy, just hearing Dr. Wallach on the radio the other night, he says, foot neuropathy especially can be caused by degenerative discs in the back... I have lost about 3 inches from my 5' 5" body. With aging, we all lose disc space and this he says causes nerve damage down the legs into the feet. Stretch the body, I do every morning before I start my day, and waiting for my new order of Inosine which I've posted about that helps my issues... which came on from hip replacement in 2010......

Hey Bat,

The first 3 months are the hardest in respect of coming to terms with chronic pain and a life without alcohol. You have endured those days, you have got through them and they will never be as bad again. I remember sitting at home trying to watch TV at the beginning of UK lockdown at the end of March ( my fist symptoms were mid January) and I had hurt my back at the same time and everything hurt, I couldn't even find a comfortable place to sit. I remember thinking that if this gets worse I won't be able to continue.

Luckily for me, Lockdown gave me 3 months of rest and recuperation. And I slowly recovered. That is the point, recovery and nerve regeneration are slow. It requires patience. You are doing the right thing, things will get better. I spoke to some guys on the thread Alcohol Neuropathy Part 2 and they said it took about a year to fully feel better, but their symptoms were much worse than ours. One guy was in a wheelchair for several months. It took me maybe 5 months to recover. I actually became over confident and thought I was cured and drank, experienced symptoms and had to start again. Over the months I changed my whole diet (Vegan) and lifestyle and focused on getting well. I think it's very important to try and do everything you can to allow your body to heal itself. Develop a wellness plan. I'm at the position now where I am pretty much symptom free apart from say awareness of my toes from time to time.

You don't need a miracle. You just need time and a bit of effort.
Here are some supplements you may want to consider ...

NERVE HEALING SUPPLEMENTS:

Vitamin B1; thiamine but best to take Benfotiamine the fat soluble form as you can store it in your liver. B vitamins are water soluble so pass out of our bodies .This together with
Vitamin B12 are the most important supplements. I take 1000ug of methylcobalamin a day.

A quality broad spectrum multi B Vitamin. Don't overdo B6
B Complex 50 ~ 100 mg
Vitamin D3 1000 ~ 5000 IU
Magnesium 400 ~ 600 mg
Omega - 3 (EPA DHA) from Algae Oil or Fish Oil 1000 ~ 2000 mg a day
Eat milled flax seed and chia seed for additional omega 3.
Turmeric 500 mg
Alpha lipoic acid 600 ~ 1200 mg
CoQ-10 100mg

I wish you well,

Atty

It isn't mentioned often, but MSM might be worth considering also..
I discovered it when I had severe RSI, and have used it for 30 yrs on & off..
NERVE HEALING SUPPLEMENTS MSM - Google Search

Top 8 Health Benefits of MSM Supplements
MSM Herbal Supplements Side Effects, Benefits, Uses & Dosage

I have been taking MSM in water for years...it does calm the pain I live with...I take 1 healing tsp in water, two times daily.... This is about 12 grams give or take.... I learned about the higher dosing years ago from another health group member...some members take 3 tps daily in 8 oz water each time...

Hi Caroline,
Thanks for your suggestion. I am scheduled for a lumbar MRI Monday, so any spinal problems affecting the legs will hopefully be found. Cervical spine MRI showed some severe foraminial stenosis c5-c6 that I thought might be affecting the arms, but a spinal doctor I saw said no and that my symptoms point to peripherial neuropathy. So far I've had 2 EMGs of the legs, most recently 6 wks ago. Both showing nothing wrong. I've heard of small fiber neuropathy which isn't usually detectable by EMG. Will discuss with neurologist next time.
I've been taking MSM in a Glucosamine complex. That along with 100 mg Hyaluronic acid keeps joint pain down.

Hi Atty,
Thank you for your words of encouragement. Much appreciated after hearing that spine doctor say that my neuropathy will keep getting worse. Maybe he thought I was still drinking. He didn't seem to be listening well. The neurologist was more hopeful, at least as of mid October when I last saw him. He thought the symptoms would eventually start to improve, but it would take several months of proper diet, supplements, exercise, and zero alcohol.

Thanks for the advice for a wellness plan. I have been changing my diet and trying finding foods that I'll stick with that will hopefully help reduce these awful symptoms. Used to love coffee on cold mornings, but dropped it recently because it's probably flushing out valuable nutrients. Used to love eating pizza (& beer) on Friday nights, hot dogs & beans (& beer) on Saturday nights, but dropped all them all with the exception of a small piece of veggie pizza Friday nights. I try to add salads to lunch and dinner, using raw spinach leaves, carrots, broccoli, nuts. Bread, particularly white bread is mostly gone from my diet. Still eat small portions of lean meat, particularly chicken. Eating more tree nuts. Cutting back on cheese. Substituted almond milk for regular milk. Trying to eat more kale and collards. It's a process I suppose. As a vegan, what do you eat for protein?

For exercise, I've been doing about an hour of full body workouts daily (aerobics, strength training, balance, stretching), following a program called "Faithful Workouts" on youtube. I also do targeted exercises to target weakness in my hands and feet. I take the creatine you recommended, 5 grams mixed with orange juice and beet juice about an hour before exercising and drink whey protein after exercising.

Thanks the list of supplements. Some of these I was missing or not taking enough of, such as magnesium, alpha lipoic acid, co-q-10, omega 3. I have not tried Turmeric yet and will add it to the shopping list.

I am very thankful for the support network here.

Hey Bat,

It sounds to me that you're doing very well indeed. Sending you a socially distanced, virtual, pat on the back!

Some thoughts

First of all what do you have against coffee? For me the benefits ( especially for the liver and the brain) of coffee totally outweigh any harms. I drink 3 cups of black coffee pretty much every morning, but then I don't drink any for the rest of the day as it will affect my sleep. Just take your supplements at a different time of day if you are worried by nutrient depletion.
I then switch to Tetley decaff green tea for the rest of the day.

For an oldbat you appear to be ultra fit! An hour a day mixed exercise sounds a great achievement. However I am just wondering if your body wouldn't benefit from days off to allow repair and recovery. I happen to know that in both strength and endurance training, rest and recovery days are seen as important as training days.

Protein. As a new vegan I get this all the time. Protein requirements are grossly exaggerated in most people's minds. Protein is associated with meat and fish but there is more than enough protein in plants to sustain bodybuilders ( see numerous examples on YouTube )
A great source is beans. I note you used to love hot dogs and beans. Whilst highly processed meat products like hot dogs are pretty much the most unhealthy foods you can eat, beans are the opposite.
They are packed with nutrients and fibre (and Protein!) Fibre is a key to a healthy diet. Try a tin of Five Beans (in a hot and spicy tomato sauce), 45p! at Sainsbury or Taco Beans from Tesco!

Anyways I wish you well,

Nadolig Llawen

Atty

Small fiber
 

Old Bat, I see you mentioned SFN, SFN is what I have and it’s taking its toll on me! Have issues walking, restless and burning legs and tremors in arms and chest and this goes on 24/7.
So far I have just started gabapentine for a month now but not really working! Wish you the best!

Hey skbing,

Welcome to the forum. SFN can be a debilitating disease and difficult to cope with. In a couple of understated sentences you capture the daily horror of life with SFN. The early weeks and months are the worst. But you will get through this. Things will improve.

Would love to hear more of your story.

I can relate to your situation but I'm pretty sure my neuropathy is caused by nerve damage in several locations from my neck to lower back. My toes on both feet are numb most of the time and if not I get a tingling response and the Dr's just say it's nerve damage but don't offer any treatment. I've had 3 neck surgeries and 2 back surgeries over the last 20 or so years so arthritis has set in just to add more pain. Now I have severe pain going down both legs and the diagnosis is severe spinal stenosis. I had an outpatient procedure done that actually gave me relief for almost 6 months but the pain is now back and worse than it ever has been. I'm so discouraged and depressed because it is affecting every single aspect of my life. I'm 64 and can barely walk so I know what you're going through. I'm searching for answers every where I can because I cannot live like this. I also enjoy my cocktails in the evening and I know that does not help inflammation but it relaxes me and takes my mind off my issues if only for a brief time. I hope you find something that helps you...I will keep you in my thoughts and send positive healing vibes your way!

Hi Mary Fitzpatrick

Welcome to the community :).

I hope that you will get at lot of support here.

You can use the Search option here (https://www.neurotalk.org/search.php). That will let you find topics and threads which may help you.

Best wishes.

Welcome, Mary Fitzpatrick--and SailinJane too.

Good news, bad news
 

Well its been 6 months since I discontinued alcohol and the numbness in the feet and hands has improved. Hooray! However a few symptoms did not improve, such as the slower movement of the fingers in my right hand. Went back to the neurologist last week and he had me walk down the hall and observed that my right arm wasn't swinging the same amount as the left. He also noted that my handwriting was small and the letters were cramped. He diagnosed me with probable Parkinsons and put me on carbidopa/levodopa (25/100 twice daily).

The good news is that the alcohol induced PN did improve and is now much less noticeable. Wish there was something I could do about the Parkinsons.

Thank you Sailin Jane. Positive healing vibes back at you! Have you talked to your doctor about physical therapy? If your up to it, maybe some gentle stretching exercises may help.

Hey Bat,

Great to hear that your PN symptoms have decreased.

In terms of your (tentative?) Parkinson's diagnosis, have a look at the threads written by Parkinson's here-now for simple self help measures. I'm sure he would answer any of your questions too.

Take care

Atty.

https://www.neurotalk.org/parkinson-s-disease/
Here is our PD forum link .

Hey thanks Atty and Jomar. Yeah that diagnosis was a real kick in the teeth. I was hoping that the issues with my arm and fingers were somehow related to the alcohol PN and would eventually clear. The good news is that the symptoms are mild at this time. In fact, the side effects from the medication seem to be worse than the symptoms. Tempted to wean myself off of it.

Talk to your PD dr about meds & sid effects... maybe adjust, put the meds on hold for awhile or look into alternatives..
You can search the PD forum for side effects, or the med name and it should bring up past posts with info..
Posting a new thread there might bring some members back to talk with..

Hang in there to Oldbat. I am 38 and is is bad shape because of my alcohol abuse. i drank on the heavy side for 5 years and now have muscle wasting and weakness all over my body and is very fatigued and weak now so bummer. Does anyone have something simiar to me or know someone with advanced nerve damage from drinking? it would be nice to form a support group. But anyways Oldbat just keep away from the drinking and maybe take some b vitamins and try to stay positive.

Welcome Tony3838. :welcome_sign:

Welcome, Tony3838!:):Wave-Hello:

Hey Tony,

I have alcohol induced PN and if I can help at all please let me know.

Best wishes,

Atty

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