[linda_sd02]

I don't know if I'm doing this correctly. Hope I can get some help with the site.
I have alcoholic neuropathy. (distal, symmetric axonal sensorimotor neuropathy?)

Shortly after I got sober, I found I had loss of balance, gait disorder, weakness of my extremeties, etc. When I was sent to a neurologist. She immediately dx me with alcoholic neuropathy. At that time, she said it could go away with cessation of etoh use, or not. It could stay the same, or progress. I have had a laminectomy since then, which relieved terrible foot pain when walking, but not much else (though I was so grateful for that!) My back pain and sciatica, though, have increased, I have had injuries, such as fractures and dislocations, from falls.

I have been treated by free clinics since then, with referrals to neurologists at times. I was having an amazingly good week, the last time I saw my current neuro, and told him I was all better. That was really dumb! I've been embarassed to ask for another ref. since then. My current meds are tramadol, naprosyn, Neurontin, Lexapro, cyclobenzaparine, buspirone, Protonix, trazadone and Lipitor. I think that's all.

I don't when the onset was. (I was drunk at the time.) In rehab, I just started noticing that my balance was still bad and I still couldn't walk a straight line. Of course, the usual extremety issues, with numbness and weakness.

I'm here to find answers and support, and to give support to other FOBs (you know who you are. Even though I have read that alcohol, along with diabetes, is the most common cause of pn, I have seen few posts about it. The only reason I can see for this is the typical alcoholic's shame and isolation. There may be others who aren't even aware of it, because the sx are so like being drunk, as was my case. I'm not being flip or disrespectful. I came to the rooms broken in mind and body, spiritually destitute, hating myself. I'm sober now, by the grace of God and the fellowship of AA, for eight years. What I have to deal with now, is what we call wreckage of the past.

Anyway, I don't really know what has happened and is happening to my body. I have started browsing the web again to try to find out. That's where I found the dx above. I recently realized I have forgotten what it feels like not to have pain every day, or to have a body that works normally. It's hard, because I look okay, and do what I have to do, hiding what it is costing me. I was a nurse, with lots of lifting and using strength that really wasn't there, if yoiu know what I mean. I say I'm retired, but really, I'm just physically broken. People sometimes question why I'm not working, because I try so hard to look well. My nero dr. wants me to use a cane, so I don't fall down, but I've tried and I'm not ready for that.

This seems like a very nice site-- supportive and empathetic. I can't believe how much I openly shared. I hope it will be a rewarding experience for me, along with the opportunity to help others.

Linda

[(Broken Wings)]

Hi, and welcome

You are very versed. Your insight is needed here to help others.

the "wreckage" is a good term. We all have more than our share to deal with.

Balance issues, research vestibular rehabilitation -- not scary at all. It helped my balance. Not hard. A lot of do-it-yourself home exercises.

The "SEARCH" button above can be very helpful.

Keep us posted.

Hang in there. You're a trooper.

Originally Posted by Linda A. Grim

I don't know if I'm doing this correctly. Hope I can get some help with the site.
I have alcoholic neuropathy. (distal, symmetric axonal sensorimotor neuropathy?)

Shortly after I got sober, I found I had loss of balance, gait disorder, weakness of my extremeties, etc. When I was sent to a neurologist. She immediately dx me with alcoholic neuropathy. At that time, she said it could go away with cessation of etoh use, or not. It could stay the same, or progress. I have had a laminectomy since then, which relieved terrible foot pain when walking, but not much else (though I was so grateful for that!) My back pain and sciatica, though, have increased, I have had injuries, such as fractures and dislocations, from falls.

I have been treated by free clinics since then, with referrals to neurologists at times. I was having an amazingly good week, the last time I saw my current neuro, and told him I was all better. That was really dumb! I've been embarassed to ask for another ref. since then. My current meds are tramadol, naprosyn, Neurontin, Lexapro, cyclobenzaparine, buspirone, Protonix, trazadone and Lipitor. I think that's all.

I don't when the onset was. (I was drunk at the time.) In rehab, I just started noticing that my balance was still bad and I still couldn't walk a straight line. Of course, the usual extremety issues, with numbness and weakness.

I'm here to find answers and support, and to give support to other FOBs (you know who you are. Even though I have read that alcohol, along with diabetes, is the most common cause of pn, I have seen few posts about it. The only reason I can see for this is the typical alcoholic's shame and isolation. There may be others who aren't even aware of it, because the sx are so like being drunk, as was my case. I'm not being flip or disrespectful. I came to the rooms broken in mind and body, spiritually destitute, hating myself. I'm sober now, by the grace of God and the fellowship of AA, for eight years. What I have to deal with now, is what we call wreckage of the past.

Anyway, I don't really know what has happened and is happening to my body. I have started browsing the web again to try to find out. That's where I found the dx above. I recently realized I have forgotten what it feels like not to have pain every day, or to have a body that works normally. It's hard, because I look okay, and do what I have to do, hiding what it is costing me. I was a nurse, with lots of lifting and using strength that really wasn't there, if yoiu know what I mean. I say I'm retired, but really, I'm just physically broken. People sometimes question why I'm not working, because I try so hard to look well. My nero dr. wants me to use a cane, so I don't fall down, but I've tried and I'm not ready for that.

This seems like a very nice site-- supportive and empathetic. I can't believe how much I openly shared. I hope it will be a rewarding experience for me, along with the opportunity to help others.

Linda

[glenntaj]

--though I'm sorry for the situations that have brought you here. You're right, though; we are a very caring and empathetic bunch.

Reading your post, I wonder if you have multiple, distinct issues, given you mention a spinal as well as alcohol history. One of the nasty things about diagnosing neural symptoms is that issues with the spine, from cord compression to nerve root compromise, can be exactly mimicked by those of more systemic problems such as alcohol-mediated neuropathy. And, as regards the latter, there's still some question as to whether the nerve damage is due to the alcohol outright or more due to the nutritional deficiencies inherent to alcohol abuse, especially depletions of B-vitamins.

Here are two forums it would be good to look around in for more info in these areas--

The peripheral neuropathy forum:

http://neurotalk.psychcentral.com/forum20.html

The Spinal Disorders forum:

http://neurotalk.psychcentral.com/fo...sprune=-1&f=22

[linda_sd02]

Originally Posted by (Broken Wings)

Hi, and welcome

You are very versed. Your insight is needed here to help others.

the "wreckage" is a good term. We all have more than our share to deal with.

Balance issues, research vestibular rehabilitation -- not scary at all. It helped my balance. Not hard. A lot of do-it-yourself home exercises.

The "SEARCH" button above can be very helpful.

Keep us posted.

Hang in there. You're a trooper.

Thank you both so much for your reply. I didn't know any replies would come so quickly!

I can't figure out how to do multiple replies, so I'll send the same reply to both of you, Broken Wings and glenntaj, if you don't mind

I was living in Seattle a few yrs ago and a PT showed me some balance and coordination excercises. I remember a couple of them, but she said that basically, anything that is difficult is good. I have got to get back on it, I know. I will search balance and gait issues and therapy, thanks. I'm going to start the vitamin regimen suggested on the boards. I've known about it for some time, but have put it off because of financial considerations. That's dumb, though, I know. It should be high on the list of expenses and I will check out iherbs.com for Methyl B-12 5000.

"One of the nasty things about diagnosing neural symptoms is that issues with the spine, from cord compression to nerve root compromise, can be exactly mimicked by those of more systemic problems such as alcohol-mediated neuropathy." Yes, this is so true. I've had surgery for both, ("cord compression and nerve root compromise") to limited effect. I have troubles w/ my UE, as well as LE, so that is confusing, too. Most of my everyday pain is spinal, I can tell that.

I have lot's more questions which have been rolling around my brain for the last eight years. I so much appreciate both of you taking time to repond to my post and I will go with your suggestions right away.

Linda

[Darlene]

Linda,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

[mrsD]

I think for alcohol induced neuropathic problems, your first choice should be benfotiamine. (this is a better form of thiamine B1).

B1 is depleted by alcohol metabolism and also some drug metabolisms (like Flagyl).

Since you are years sober, I would not expect your alcohol problem as a primary focus anymore, unless you are very low or genetically primed to have low B1 enzyme levels.

Some alcohol seeking behaviors can be linked to pyroluria... which is a benign liver enzyme error, that leads to loss of zinc and B6. Many pyroluric self medicate with alcohol.

You can get serum tests to show if you are low in B6 and zinc and also a urine test to see if you have the pyrroles being excreted. This is a genetic thing and does not go away.
http://www.drkaslow.com/html/pyroluria.html
and
http://www.digitalnaturopath.com/cond/C371961.html

B12 and Vit D3 are mainstays to check for all PNers.
But special circumstances arise with people depending on their own metabolic functions and genetics.

So for you I'd look also to the pyroluria and low B1 possibility.

Also be aware that once a doctor gets hold of a history issue like alcohol, he/she will never let that go and blame everything on it. This is very typical. The patient then languishes with some other factors that go ignored! You've been sober for quite a while, and therefore your PN may be due to other things as well.

[(Broken Wings)]

Originally Posted by Linda A. Grim

Thank you both so much for your reply. I didn't know any replies would come so quickly!

I can't figure out how to do multiple replies, so I'll send the same reply to both of you, Broken Wings and glenntaj, if you don't mind

I was living in Seattle a few yrs ago and a PT showed me some balance and coordination excercises. I remember a couple of them, but she said that basically, anything that is difficult is good. I have got to get back on it, I know. I will search balance and gait issues and therapy, thanks. I'm going to start the vitamin regimen suggested on the boards. I've known about it for some time, but have put it off because of financial considerations. That's dumb, though, I know. It should be high on the list of expenses and I will check out iherbs.com for Methyl B-12 5000.

"One of the nasty things about diagnosing neural symptoms is that issues with the spine, from cord compression to nerve root compromise, can be exactly mimicked by those of more systemic problems such as alcohol-mediated neuropathy." Yes, this is so true. I've had surgery for both, ("cord compression and nerve root compromise") to limited effect. I have troubles w/ my UE, as well as LE, so that is confusing, too. Most of my everyday pain is spinal, I can tell that.

I have lot's more questions which have been rolling around my brain for the last eight years. I so much appreciate both of you taking time to repond to my post and I will go with your suggestions right away.

Linda

You're willing to try. It will give you some benefits.

Just keep track of it all so you can grade positive and negative. Starting too many things at once is hard to tell which is helping.

So much to learn from each other.

Keep asking questions.

What are you having problems with in your ADLs? Lot's of workarounds here.

Try to inhale water, breath and posture and sleep if possible.

[mrsD]

You are taking Lipitor? This can cause PN, and mitochondria damage. I would look at this seriously!

Sorry, I missed that on first read thru.

[Twinkletoes]

Welcome to NT, Linda! Congratulations for being 8 years sober! Woohoo!!!

Looks like you've received some good replies from some of our members here. Just so you know, MrsD is a retired pharmacist -- we depend a lot on her expertise around here.

Just wanted to say hi, and hope that you are able to find the help that you are seeking to feel better.

[linda_sd02]

Thank you for saying that. I have have had some problems getting adequate pain relief because of my alcoholism at times. My current PC nurse says the right things, but she says alcohol affects a large number of her family. Not that she is prejudiced, of course! I finally got her to give me, almost, the amount of Tramadol that I can get by on. That is what I have been taking for years. I asked my cardologist if my drinking was affecting my heart (a-fib) and told him what I drank and how much and he seemed actually angry and muttered that what I drank was poison. (I don't think he was mad at me, personally, but the fact of it.) Actually that was okay, because I need to have that taken into consideration as I try to figure out what is wrong with me, what I can do about it and what the future holds. I know the neuropathy is all mixed up with spinal cord problems, so that, I think is a difficulty.

I have my basic pains and NP sx, everday, but have other changeable issues daily. It really seems to me that my PN is still progressing. I can even feel it in my face. I had a total teeth extraction 2 or 3 yrs. ago and starting noticing a decrease in my sense of taste. I assumed that it was due to nerve damage from the surgery, but it has continued to the point that today, I have very little sense of taste.

I worry, sometimes, about the future because we adopted a baby with microscopic brain stem lesions. I ID him as being adopted, so no one would think it was genetic. But I do know what a damaged brain stem means to the body. Nothing autonommic works and it gets worse. That is scary.

So, thank you for your post. Your empathy for others is very evident. I am going to start with the supplements you suggest. I hope I get it right. I've known about B vitamins for a long time, but I am glad you have researched the right ones to take. Is there somewhere on the boards where I can get a list of all of them?

Yes, I do take Lipitor 40mag qhs. Any suggestions about that?

Wow! I had no intention when I started to make such a long post. But, it's all very complicated to me.

Thank you so much for your post and for all the work you do.
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