Trying to help Mum deal with her PN
So let me start with a friendly hello-- this is my first post here! I have tried making an account a couple times some days earlier, but I always got an error when I did. Thank the heavens it finally worked tonight, though. Anyways, I've been reading through as many threads pertaining to my mother and her peripheral neuropathy as I could find. I've learned a lot in the time Mum and I been sitting here, waiting for answers from her doctor and the nurses and the neurologist, and I'm ever grateful for this place and the people in it. Allow me to get to the point, though:
Let's start with a brief (or my best attempt at a brief) history on my mom's life choices leading up to now. She had gastric bypass surgery sometime in 2006. She used to take B12 sublingually for this issue for maybe 5 years at best before eventually stopping-- and then she began drinking wine. It wasn't a lot very early on, but it sort of ramped up over the next 15 years she would do so. Eventually she was drinking around 5-7 glasses every night or so, sometimes more sometimes less. Then she started buying hard liquor, bourbon, what have you. That only lasted maybe 2 months. She went into the hospital about some 40 days ago for hyponatremia due to Lisinopril-HCTZ she was taking-- and she had it BAD. She told me she remembered the staff telling her that her sodium levels were in the double digits. But she came home alright from that after about 5-6 days in the hospital. Only problem was, she needed a walker to move around, and still exuded forgetfulness. No pain whatsoever, though. Nor tingling, either. She also had to have a 2L fluid restriction. The very first night she went in, she stopped having any alcohol though. And her abstinence continues to this night. She went back into the hospital however no longer than a week later for really high blood pressure. I don't remember the specifics, but it was definitely around the severe hypertension range, and then she stayed again because her sodium levels dipped back down some. That got fixed up in 3-4 days, and she was good to be sent back home. And for the latter half of the day she got back, she even looked like she was getting better. One time she sat on the edge of her bed and crossed her leg over the other to eat some Taco Bell her brother and sister got her (her sister had flown in from FL to help me take care of her for 12 days). She had even sat down on the couch with them to talk, but she did need a little help getting back up. But by night time, she exhibited tingling/numbness and pain. And then it got bad. Bad enough to put her to tears. She couldn't sleep over it. And it was just her legs at this point. The memory issues came back too, and then her doctor went and put her on a 1L fluid restriction for a couple days. She was just crying about the pain and being thirsty at this point when she was awake, and it tore me up. She couldn't live like this. Eventually it was reverted back to 2L a few days later, and then she was given hydroxyzine to help with the pain-- which it didn't, at all. And then there was the hot-and-cold issue she was having. Frequently me or her sister would come in and she'd ask us if we were hot or cold. We'd tell her no, and she'd mention how hot or cold she felt. Usually it was cold, but sometimes she was hot. We got her a heated mini-blanket and some ice packs. These past 18 days it's been entirely just cold/freezing or normal, though. Finally, on the day her sister had to go back home (9th of March), she was given 100mg of gabapentin to take every 8h, and 1 capsule of vitamin B1 to take once a day. It didn't seem to really help a lot, though. And then a few days later, she finally got an EMG. We got called for the results 2 days after, and they said the words: my mother has peripheral neuropathy, caused by alcoholism. It's been almost 10 days since we got that call, but I'm a little confused. I understand alcohol can cause it, but does it usually happen a few weeks after one already has stopped drinking? And so suddenly? Her symptoms seemed to develop overnight, really. She told me she experienced absolutely no pain or numbness until the night she got home. I figured, after doing as much looking up as I could (and after finding some stuff out via these forums), that it wouldn't hurt at all to put her on some B12 tablets. So we got Jarrows Methyl-B12, 5mg. She started taking it once a day on the 7 days ago, and only 2 days ago we upped it to 2 times a day. I try to give them to her on an empty stomach. Her gabapentin dosage was also slowly upped to 300mg twice a day and 100mg in the morning (it'll be 300mg 3x a day on the 29th), and my mom has finally noticed some relief from the pain both on and off the medication, but it does still flare up sometimes, usually at night. Oh and a couple more snippits of info: I asked the neurologist when they called us on the 25th what her B12 levels were. They didn't specify the ratio or anything, but they did say it was 387. This was before she started taking the B12-- I don't know how long ago it was, if it was the first time she went into the hospital or what. But I'm assuming that's going by the pg/mL ratio. At least, it'd make some sense if it did. Additionally, she has VitD3 pills she had stopped taking some time ago too, I don't know if it was recommended to her or what, but I figured maybe she was depleted of that somewhat too by her alcohol abuse, so we talked and now she's back on that once a day. And her glucose levels were 116 too, so now we have to watch for that. Mom does not like the aspect of having to cut back on popsicles and soda. Some days I let her have 1 or 2 because I feel so bad for her. So now at this point, I'm wondering what exactly else can we do to help her memory? She's been feeling a little better when the gabapentin has likely worn off, and somewhat better 2-3 hours after taking the 300mg pills. I know it's only been 7 days she's been on B12, and I would be lying if I said her memory hadn't improved at least a LITTLE since those 40 days ago. But I'm just worried-- I love my mom, to death and then some. I just want to make sure I'm doing everything I can to help her get better. Sometimes it still hurts bad, sometimes it spreads to her arms and hands, and sometimes she'll cry over the pain-- she doesn't want to be like this anymore. She's not a very rational person when it comes to coping with being in pain so often, she's admitted this and I know this through living with her all my life so far. And I do understand these things take time, I just want to know-- is there anything else she might need to be taking? Or is just down to patience and waiting, now? She hadn't been able to go up the stairs on her own before either since this happened, and the one person she was confident that could help her up them (and also drove her around) likely has COVID now. Yesterday, her PT had came by to help her do a little exercising. He even helped her take 2 steps up the stairs (mostly) on her own. And we have a little step that she practices stepping up and down on, one leg at a time. And it wouldn't really be right to ignore the good that taking the B12 (likely) has brought: After mom began the B12 every morning, when her OT and PT came some days later they both noted how much better she was moving and were impressed. And then a couple days later my grandma came by and also spoke how she was glad to see my mom moving around more. I just want to know when, or if, I can expect her memory to at least improve to the point where I can trust her to take her own medications without getting sidetracked and/or forgetting minutes later. This isn't to say it happens every time, she has already had a few days where she takes her daily medications without me even needing to bring it up. I'll ask her and some days she'll say "yup", but I just...I don't know. Maybe I'm overthinking this, and we just need time? Sorry for such an obnoxiously long post, I just wanted to get as much context in as I could in the hopes that maybe someone would be able to help me. I would really really appreciate any advice at all, even just confirmation that it'd just be time before maybe we saw more improvements in her memory and her PN. I want my mom to get better ASAP. She keeps talking about short-term care/assisted living or whatever it's called, and I'm really not against it even if I want to be the one watching over her and seeing her get better, but I'm just...I worry, you know? I worry maybe they won't give her the B12 she might need, that maybe they give her sugary stuff she should cut back on instead...even if their entire job is making sure she's getting better. Either way, thank you for reading this absurdly long post of mine. I appreciate it, even if you might not know how to help me... :) |
Welcome Soulfulyin. :welcome_sign:
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Alcoholics often develop peripheral neuropathy because of the nutritional deficiencies caused by not eating correctly while they are drinking. You are off to a good start with the vitamins. B1 , B12, and D3. Make sure the D you are using is D3 and the B12 you are using is methylcobalamin. These are the usable forms of the vitamins for your body. A good multl B vitamin and a good multi vitamin would be a good idea. It's important that she eats a balanced nutritious diet.
Since she may also have diabetes, she should be given an A1c Test which indicates the average blood sugar level over a 3 month period. This would help to diagnose whether she is a diabetic or not. Repeat the test 3 months later after she has been taking the vitamins and eating well for that period. I wouldnt jump to conclusions based on that first test since she has just started to take action to turn things around. Its possible that a combination of dietary deficiencies and diabetes has caused her peripheral neuropathy The good news is that peripheral neuropathy caused by alcoholism/ dietary deficiencies is one of the few causes of peripheral neuropathy that can get better long term. |
Hi SoulfulYin
Welcome to NeuroTalk :). I have relatively minor peripheral neuropathy in my hands arising from alcohol abuse (public knowledge on NeuroTalk). I quit years ago thanks to a combination of my hard work and skilled help from my mental health care team. Your mother might find this forum Alcoholism, Addiction and Recovery a source of both information and support. |
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I don't think she necessarily has diabetes yet, at least whoever had said her glucose was a little high hadn't said she had diabetes. I did a bit of looking stuff up and apparently she is in prediabetes range though. I'm not sure if prediabetes can cause neuropathy, but all things considered I'm not going to ignore it or anything. I'll try n help her get a healthier lifestyle going-- we'll order some multivitamins, maybe B complex too, but I'm a little worried about getting her too much of something, so if we get multi B vitamins and/or multi vitamins, should she be taking less of the B1, B12 or D3 she's taking right now too? We've already noted some improvements since she started taking the B12, B1 and D3. But my Mom's not exactly gonna be happy until the pain's all gone, and whenever she's presented with something she might have to stop doing (like eating fast food or sugary stuff) she ends up in tears because she feels overwhelmed, I'm assuming at least. She told me she feels like I'm the only one trying to help her get better, which is an awful feeling for me but especially her. It takes weeks to get to talk to someone qualified to actually help, and then they only tell us that increasing the gabapentin dosages can help. She knows she's doing the right thing, she knows it's going to help her, but I guess it's just hard for her to have to turn everything around while also dealing with long-lasting and sometimes intense pain. I really hope we can get to a point where she at least can be happier soon...it's killin' me to see her like this. :( |
Benfotiamine is a more readily absorbed form of B1.
Jarrow B Right is a very good multi B complex. B6 you have to be careful not to take too much of. The combo of B12, benfotiamine, D3 2,000 iu , and B Right would be fine to take |
It is true--
--that in some people even blood sugar readings in the prediabetic range can cause neuropathy.
But I think the much more obvious aspect here is vitamin deficiency. She had gastric bypass surgery in the past--that is absolutely associated with difficulties absorbing vitamins, especially the B-complex ones and especially B12. And B12 deficiency (that level of 387 you mentioned was much too low, despite typical American lab ranges; in Europe and Japan the lower range limits usually start around 500-550--we just seem to take a long time to catch up to more recent clinical thinking) is not only associated with peripheral neuropathy, but with multiple systems degeneration that can include cognitive/memory issues and motor problems. In fact, in gerentological circles it is established that among elderly people with cognitive/memory issues one really ought to check their vitamin levels first before assuming dementia or Alzheimer's; B12 and other B-vitamin deficiency is quite common as people get older as the intrinsic factor needed to break out cobalamin from foodstuffs in the stomach significantly declines with age (with or without alcohol consumption). I'd see if you can get your mother's doctors to monitor her vitamin levels regularly, and to continue her physical therapy. Hopefully she will improve over time, but neurological damage takes a long time to heal, if it can, and the recovery is often patchy and incomplete. |
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Another issue we're running into is that her insurance doesn't cover frequent PT or OT visits, nor does it cover short term care for them to help her get back on her feet, and we're already strapped for money as it is. And for some reason she becomes a lot more immature and unwilling to work out when it's a relative (like me) trying to help her as opposed to PT or OT. I've been there when they visit-- they ask her to do something, and she tries with a little comment of uncertainty as her only protest, if she does protest. When I want her to work out, she tells me to wait 5 minutes and then takes another 2 minutes when I get back to sit up and reach for her walker. And then it's a struggle to get her to do some workouts that she already has done before with PT or OT. It's just rough. And I guess it's gonna be like this until she's able to ditch the walker, which could be months. I'm not really looking forward to that... |
Another update to my increasingly worse situation
It's only been a few days since my last post regarding this, but I'm becoming more and more worried about my mom's memory rather than her neuropathy. I mean the neuropathy's bad to the point that she can hardly go up the stairs, sure, but even so it'd be easy for me to just help her up the stairs and then call someone to drive us around. Better yet, even if she COULDN'T leave, she could still WORK. She's an accountant (I think. It has something to do with managing money/bills. Whatever it is she does, it requires her memory be in tip-top shape), 90% of what she does, she can do at home on her laptop (and has been almost exclusively since the pandemic). But now that her memory's shot? No chance of making enough money to pay rent alone, let alone other bills like internet or insurance.
My mom's memory seems to have stagnated in it's recovery-- or it's improving so slowly that I can't even tell if it's getting better. It's worrying. She forgets things almost immediately sometimes still, she forgets to pay bills, she forgets so much she has to write down every single thing that's said to her during calls with people like her doctor or the neurologist or she won't remember any of it. We don't even know what could be causing it, and now we're at a point where we're drowning in so many bills that we're gonna have to put off even trying to go get blood tests, which also cost money we don't have. And then there's her glucose levels which are also elevated (116), and I've seen neuropathy doesn't really get better until that's accounted for, but dealing with that in and of itself right now just seems like such a large beast to handle, mainly because we have no money to just buy diet-related foods that would help lower/keep her blood sugar in check. It just feels like we're stuck in a shrinking cage and every time we try to reach out to grab the key to unlock it, the cage shrinks even faster. I'm sorry to have to sound like such a downer-- I just...I'm at a lost at what to do here. Every story that I've read regarding neuropathy didn't also have to deal with memory loss, so I guess our case is a terribly unique one. But it makes me wonder what we can even do to fix it? She's been on her current vitamins (B1, Methyl-B12 and D3) for only 10 days so far, in the case of the B12. D3 has been a couple days longer (maybe 3/14), B1 has been since 3/9. I've done some more looking things up since it feels like we're so inundated we can't just go and get tests or anything, I've seen some problems with the liver (such as cirrhosis) can also cause memory issues due to hyponatremia being a frequent complication of it (which she did have at the beginning of all this, and then it came back maybe a week or two later)...alcohol damages the liver, right? Maybe that's what we're dealing with. Then again, I'm no doctor, and the only thing I even know about is her B12 levels (which were taken weeks ago), so maybe not. Maybe it's her magnesium, or her B6 levels. But before we can even find out what it is via a test, we need both a ride there and the wealth stability to even afford it. When I read Icehouse's story, it seemed like such a miracle that gave me so much hope that my mom could recover just the same, except for one big problem: I don't think Icehouse had to deal with memory issues at all during his recovery journey, which makes me think that our journey is going to be even harder for it. Someone from Pathways is going to come and draw my mom's blood sometime this week I think, so at least we have that going for us. Don't need to have someone drive mom there, we can find out her sodium levels that way. And then maybe I can ask her doctor or whoever calls us back for her nutrition levels. Maybe her memory issue is really just low magnesium/vitamin B. It'd make life so much easier for us both if it were as simple as giving her supplements for a few weeks and then maybe 1-3 times a week after to get her memory back. I hope everyone's doing okay, either way. Advice would be appreciated though, because it feels like I'm running out of time to save my mom. |
Hi SoulfulYin,
Apart from you and your mother, do you have any other close relatives or support people who can help. I may have missed it if you wrote in a post already, but I'm not even sure if you're an adult and it worries me very much that you are maybe dealing with the responsibilty of helping your mother become well again all on your own. I'm asking this because of personal experience and I know how difficult it has been for my own daughter, who is actually a young adult, to suddenly become a carer of sorts for me while I was and am still going through some full-on health issues in the past few years. Do you have a good relationship with your mother's doctor? They should be helping you sort out her health care. |
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