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Old 01-17-2021, 04:06 PM #571
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Quote:
Originally Posted by Jane85 View Post
Thanks for that post On a freeway and thanks to all who have created and keep this page going for so long. It is so helpful. I know itís a long road to recovery but I am curious with your personal experiences, did the progression of the disease stop once you stopped drinking? And if so, about how long did it take for that to happen? Thanks for any feedback.

Hi Jane,

Hope you are well. Have often thought about your progression from diet thread.
I asked the same question further back in this thread and was told in takes about a year. For me it was quicker but I had to start again because I mistakenly thought an odd drink wouldn't hurt me. My symptoms started in January 2020 with numb toes and thats pretty much all that remains for me.
How are your symptoms? Are you making progress? Have you plateaued? Any top tips from your Facebook group? I'll text in diet thread soon.

Atty
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Old 01-18-2021, 10:56 AM #572
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Hi Atty,
I am so happy for you and your success. Iím sure you know just how fortunate your are. Itís been over a year and a 1/2 since my last glass of wine. I am not 100% sure my pn is due to alcohol but I would definitely bet the ranch on it. I seemed to have plateaued 6 months ago or so but recently it changed (progressed). The whole food diet is great for overall health but not sure if it has helped with pn. I am thinking I will start a keto vegetarian type diet. It seems like a lot of folks with pn are having success with that. I wonder if the cause is alcohol, does that change the response to diet as opposed to the cause being diabetes or something else. Anyways, the Facebook group is great, you should join. Lots of great information with a positive attitude. They have guest speakers via zoom that can be very interesting. Recently one from a company with a product in the process of testing and approval for nerve regeneration (will find the info and send you the link). Also (because your toes are numb) a toe separator can help increase circulation (will send that link too). Take care
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Old 01-18-2021, 12:13 PM #573
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Facebook Here is the address for the zoom meeting (not sure you will able to access). The company is WinSanTor, CEO Stanley Kim. I canít find the link that was posted for the toe separator but the company is natural footwear.com. There are before and after infrared pics of feet using the product. The product is stupid expensive but you can get something very similar on Amazon for cheap. Take care Atty
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Old 02-02-2021, 08:48 AM #574
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3472 days sober...

We have snow, sun, rain, sun , snow....all in one day. Welcome to the weather in the South!

Hope all is well and everyone is staying sober!

Ice
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Old 03-02-2021, 08:34 AM #575
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3500 days sober

What a nice round number!
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Old 03-02-2021, 09:00 PM #576
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Well done Icehouse.
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Old 03-18-2021, 09:06 AM #577
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3200 days. Smaller number, but just as round.
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Old 03-29-2021, 05:23 AM #578
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Default Wow...

I should relay Icehouse's story to my mom. Maybe she could find the strength to keep fighting for her life back, if she saw how Icehouse recovered.

I've already posted about her predicament in the PN thread, but I'll just throw a (not-so) quick summary here: She used to smoke (but quit when she found out she was pregnant w/ me and hasn't smoked since, Idk how long she smoked for either), got gastric bypass way back in 2006, then drank for about 15 years, around the time I was 7. It wasn't much early on but it ramped up over time and then the last few months she drank she started drinking hard liquor, bourbon and what have you. Now she's got the accursed peripheral neuropathy. It developed incredibly quickly, too. First she went into the hospital for critical sodium levels (they say it's due to medications she was taking, which could be true but she's been on that for 20 years and never had that issue-- I suspect it's maybe due to that AND the alcohol abuse), came home w/ corrected sodium after ~5 days and was given new blood pressure meds. Still forgetful, needed a walker to move around, absolutely 0 numbness or tingling, but had to be on a 2L fluid restriction.

Went back to the hospital for rly high blood pressure, stayed again for a couple days cuz her sodium dipped back down, not nearly as bad as before tho. Got put on a 1L restriction after, and when she got home she was actually HAPPY. Sat on the edge of her bed, crossed her legs, ate Taco Bell. Still needed the walker, though. I'd even say her memory was better then. Then by the night, everything crashed down on her. The pain, the numbness, she said her legs were tight (sometimes she called it pain, but when I asked to rate 1-10 how bad it was she would sometimes be unable to say it was really pain and so couldn't rate it), sometimes they burned, but were constantly numb or tingly. Nothing helped. Ibuprofen, prescribed hydroxyzine, tylenol, muscle relaxers, absolutely nothing she took helped. Then her doctor prescribed her Thiamine (B1) finally, and then we ordered B12 too and got her back on some D3 she had stopped taking. Before her EMG, she also got to take a bit of gabapentin every 8h. By now she's taking 300mg every 8h, and sometimes she's okay. Sometimes the tingling/numbness is low, sometimes her legs aren't tight/burning, but now sometimes her feet and hands are tingly, numb or burning. She hasn't drank a drop of alcohol for...maybe 43 days total so far. She won't ever drink again, she's promised to me. Even put all her bottles by the door for me to take out. She wants to keep her wine glasses (about 80% of them were gifts anyways, wouldn't be right to toss 'em out), and I'm 100% okay with that since I like to use them to pour myself some water or SunnyD to feel extra fancy Her EMG results came back about 11 days ago, peripheral neuropathy caused by alcoholism. Mom asked the person relaying the news to her on the phone if it could be reversed. Broke into tears (more than usual) when she was told no and that it would simply be managing symptoms. Eventually we had a video call w/ the neurologist on the 25th and got a lil more info. Her glucose levels were 116, and her b12 levels were 387 (but they called it low end of normal). I don't know anything else about her vitamins or anything, and I tell her we should probably get tested to find out to see what else we need, but she says that costs money (which we're already low on), so we can't. The tests she took were before I got her on the B12 (that's only been going on since about 9 days ago, 5mg of methyl B12 twice a day). So now I gotta help her eat a better diet too, all while wondering how rent's gonna be paid since she can only make 60% of what she did while at work due to her disability leave or w/e it's called. She can put it all on credit cards and tell me it's fine, but we don't know when she'll be able to return to work-- she can hardly make herself breakfast, getting up the stairs is out of the question right now (though she DID manage to get up 2 steps a few days ago with help of PT).

So now here we are. Mom's having a hard time coping with the pain/immobility very frequently. She's still in tears over it almost every day, but sometimes it doesn't get so bad where she's crying. And she's up and moving around in the mornings more often. Her memory is still an issue, but technically 'treatment' has only really begun about 9 days ago anyway, at least in regards to refilling her emptied reserves of vitamins due to her alcohol abuse. Now we just have to keep her sober (which shouldn't be an issue), and keep her active. She tends to just lay in bed and watch TV from about maybe 3PM to...well, the next morning. She'll walk 1 or 2 laps around the house maybe 1-2 times a day (sometimes she doesn't at all outside of making herself breakfast), but other than that she doesn't really exercise much unless PT or OT are here...I try to help her, but maybe I push her too hard. We tend to argue frequently when I try to help her exercise. I don't know. I want her to be healthy again, even though I know it's a veeery lengthy process. I just don't know where to begin outside of the vitamin supplements. We have slips with all the exercises she's able to do already. But it doesn't feel like we're getting anywhere, and it just makes her pain worse sometimes. I just hope this memory stuff doesn't last for too long-- she works as an accountant, so having cognition issues would make keeping her well-paying job really hard, whether or not her body manages to recover well.

Well, so much for a short summary, right? I practically posted close to the entire story here as well. Hope that's okay...I figured after spending so much time reading the recoveries of everyone else (particularly Icehouse's impressive one) maybe I should post here too, see if anyone has any advice or something. The biggest, biggest issue for me, personally, is the memory. I don't know about anyone else's issues with their cognition during their recoveries, but from what I've read they all seemed to either not even have memory problems or the memory problems maybe weren't significant enough to impede things much, but maybe that's because people's neuropathy in their cases weren't preceded with hyponatremia. I just really hope that her sodium levels going back down the 2nd time isn't leading into something much worse than just neuropathy, but things do seem to be going down that road. In my mom's case, she just seems to have trouble retaining information. She forgets the names of PT and OT sometimes, she has to write down any and all appointments she gets because she frequently forgets about them or who's coming or what they're doing, sometimes she'll even forget what the conversation she's currently in is about. She's been on gabapentin for maybe 3 weeks now, and still can't seem to remember what it's called or what it's supposed to do for her. I'll come in with the bottle and she'll say "what's this?", sometimes she remembers the name partially, but either way 7 times out of 10 she'll take it and then ask "and this is supposed to help with my tingling?", sometimes she'll ask me what she's supposed to take when the pain gets bad and I can only tell her that she takes the same medications at the same time every day, and that there's no specific time she can take anything when it gets bad, except maybe ibuprofen. Sometimes I don't think the gabapentin really helps her. But maybe this is all just part of the process. 2 steps forward, 1 step back, as I keep seeing people say. I'm not so sure right now, things are pretty rough. She's not making enough money, so she can't pay for people to help her enough where maybe she could get back to work in a suitable timeframe, and she IS on the disability paid leave thing, w/e it's called, but again, 60% of her original pay isn't enough to pay rent even.
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Old 04-02-2021, 09:49 AM #579
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Hey, thanks! For what it's worth, I do have memory issues. I keep a google calendar for everything and I have spreadsheets for the important stuff at work and home.

I struggle with the simple things, like names, birthdays, dates....but I can remember my phone number from 1985

Anyway...I hope Mom can see the importance of just walking around the house more, or down the block.
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Old 04-02-2021, 09:52 AM #580
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3531 days sober!

Rented a 27" gas powered aerator my 1.5 acres and after 3 hours of maneuvering a 200lb beast in the mud I was pretty sure I would never walk again...

Seriously though, I was sore for two days and I could not walk properly for four!

But, I am so grateful I have the strength and motivation for physical labour!

Until next month!

Ice in the mountains
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