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Old 08-18-2021, 12:43 PM #601
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Hey welcome, and good on you reading the whole thing, not many do that!


I'm in a hurry, but I actually don't think that sounds like typical peripheral neuropathy.


Sure, there are exceptions to the rule, and I know some people in the neuropathy forum have this, but generally, it is a degradation of the nerves (well, their myelin sheeth) in your extremities. For all kinds of reasons, not in the least: lack of B12 from drinking. Since those nerves are the furthest away they degrade first. (taller people are at bigger risk BTW). But as you noted, there are probably 100 causes of neuropathy, certain antibiotics, statins in some cases, etc.



That said, whatever you have will almost certainly get worse when drinking. Our bodies are just not equipped to process the toxins (aldehydes mainly).


As for symptoms: I never had numbness, I went straight to excruciating pain in a matter of days. There's also a difference in which type of nerves gets hit first: sensory or motor nerves. Motor nerves are responsible for walking/keeping straight etc. I have no damage on my motor nerves, and quite a lot of damage on my sensory nerves, bad enough that it showed up on the EMG, basically from my shins down.



All this just to say: there is no easy diagnose. Even if less likely/atypical, it may still be what you have. But only a neurologist could (no guarantee) find out.
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Old 08-20-2021, 04:30 PM #602
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Hey welcome, and good on you reading the whole thing, not many do that!


I'm in a hurry, but I actually don't think that sounds like typical peripheral neuropathy.


Sure, there are exceptions to the rule, and I know some people in the neuropathy forum have this, but generally, it is a degradation of the nerves (well, their myelin sheeth) in your extremities. For all kinds of reasons, not in the least: lack of B12 from drinking. Since those nerves are the furthest away they degrade first. (taller people are at bigger risk BTW). But as you noted, there are probably 100 causes of neuropathy, certain antibiotics, statins in some cases, etc.



That said, whatever you have will almost certainly get worse when drinking. Our bodies are just not equipped to process the toxins (aldehydes mainly).


As for symptoms: I never had numbness, I went straight to excruciating pain in a matter of days. There's also a difference in which type of nerves gets hit first: sensory or motor nerves. Motor nerves are responsible for walking/keeping straight etc. I have no damage on my motor nerves, and quite a lot of damage on my sensory nerves, bad enough that it showed up on the EMG, basically from my shins down.



All this just to say: there is no easy diagnose. Even if less likely/atypical, it may still be what you have. But only a neurologist could (no guarantee) find out.
Thank you for your response! And yes, several nights of light sleep allowed for reading through both.

And I agree that I don't exactly feel like my symptoms follow what would seem to be typical peripheral neuropathy. I have some of the autonomic issues along with the muscle pain, stiffness, weakness, and mild burning. It is why I have wondered if it is more myopathic, which apparently starts more proximal and then works it way outward. I also know I saw where if it is more chronic in nature, it isn't likely to show on bloodwork, which certainly parallels my initial testing.

That is interesting on taller people, but it makes logical sense.

I do think there is a good chance this is still in part the residual side effects from the antibiotic I took years ago, but the symptoms are a little different than typical, so I am trying to determine other possible additional causes.

I have a neurologist appointment next Friday, so again, I do appreciate your thoughts as it just gives me more to talk about with him at my appointment.
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Old 08-21-2021, 04:44 AM #603
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Originally Posted by ajwinpain View Post

That is interesting on taller people, but it makes logical sense.

Yeah, my neurologist mentioned it as I'm 6'7". Of course, it's not the only factor, but it does play a role.



Quote:
I do think there is a good chance this is still in part the residual side effects from the antibiotic I took years ago, but the symptoms are a little different than typical, so I am trying to determine other possible additional causes.
Absolutely. Especially Levaquin (but there are many others) is known to sometimes cause this. Most often it's a combination of things - immune system goes out of whack from the antibiotics, giving alcohol more chance to do further damage, even at amounts that usually would not cause an illness by itself. So you start feeling bad, don't go out as much etc etc. And there's age of course: what we could process at 18 is not what we can process when we're older. And then there is stress: I have learned over the last 10 years that it does play a big role in the perception of the symptoms.



Quote:

I have a neurologist appointment next Friday, so again, I do appreciate your thoughts as it just gives me more to talk about with him at my appointment.
Good luck. Try to be as active as you can in the conversation while still listening. The more info you can give (even if it seems irrelevant) the better they can judge what's really going on. A timeline is often helpful too (when did it start, when did symptom x became apparent etc)



However: don't be surprised or discouraged if at first he/she can not give you an exact diagnosis (yet) either. It's one of the frustrations you see quite often in the neuropathy forum (alcohol induced or not). These conditions are simply not easy to diagnose, and for some they will never know for sure.



Then again you clearly showed you are serious about finding out what ails you, so I'm sure you probably knew all this. Let us know what they came up with.
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Old 08-29-2021, 01:45 PM #604
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Yeah, my neurologist mentioned it as I'm 6'7". Of course, it's not the only factor, but it does play a role.




Absolutely. Especially Levaquin (but there are many others) is known to sometimes cause this. Most often it's a combination of things - immune system goes out of whack from the antibiotics, giving alcohol more chance to do further damage, even at amounts that usually would not cause an illness by itself. So you start feeling bad, don't go out as much etc etc. And there's age of course: what we could process at 18 is not what we can process when we're older. And then there is stress: I have learned over the last 10 years that it does play a big role in the perception of the symptoms.




Good luck. Try to be as active as you can in the conversation while still listening. The more info you can give (even if it seems irrelevant) the better they can judge what's really going on. A timeline is often helpful too (when did it start, when did symptom x became apparent etc)



However: don't be surprised or discouraged if at first he/she can not give you an exact diagnosis (yet) either. It's one of the frustrations you see quite often in the neuropathy forum (alcohol induced or not). These conditions are simply not easy to diagnose, and for some they will never know for sure.



Then again you clearly showed you are serious about finding out what ails you, so I'm sure you probably knew all this. Let us know what they came up with.
So I saw my neurologist again on Friday. I definitely tried to give as much timeline with symptoms, mention anything at all that could be an issue, and play an active role in the discussion.

He wants to take a couple more labs. He also mentioned a skin biopsy as his first thought with my symptom description was small fiber neuropathy. I know you even felt like my description didnít sound like a typical peripheral neuropathy, and my Dr. apparently concurred. I donít know if that is a good thing, bad thing, or just a ďdifferent thing.Ē I suppose any neuropathy isnít great.

I know I have good and bad days now. Sometimes the bad days come after good stretches when I feel better and probably overdo things.

Apparently he has been seeing another patient who may also have some adverse reactions to a levaquin family medicine, too. He has done past EMGs for me, but didnít feel like that would be helpful at this time. I suppose if the bloodwork/biopsy shed no helpful light on things, I might push for another one, just to see what might come from it.

As you mentioned, I definitely do wonder if a weakened nervous system from the medicine combined with some age, 47, and what was more alcohol than is good all were too much together. Definitely staying away from alcohol as that seemed to cause flaring of symptoms within 48 hours, even in moderate amounts.

Again, I appreciate your above feedback! It was helpful as I went to my appointment.
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Old 08-29-2021, 05:23 PM #605
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OP: From an old hand at the doctor routine, take this test, let's do this one and it can go and on until the patient stops it all. There is so much info on this forum in Neuropathy area. and I've posted a lot in the almost 11 yrs I've dealt with it, it's so improved now but I was having so much burning/tingling for a long time and this from hip replacement surgery. And we do have to help it along to reduce issues. You won't hear this info from your doctors, believe me.

A friend got off the drugs and has been taking Grape Seed Extract for maybe 15 yrs or so. I've been taking it 25 yrs. My friend has dealt with neuropathy for about 40 yrs and hardly help from her docs. More drugs for this and that....Another gem I've found on my path is Inosine. And cutting out sugars majorally and refined carbs...you get carbs n plenty of veggies. So we are not suffering from carbs/sugars absent from our bodies.
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Old 08-31-2021, 08:31 PM #606
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Wow, so whether I have small fiber neuropathy or not, and whether it has been caused by a Med reaction, alcohol, or both, I can say this is quite a roller coaster. Some days arenít bad. Some days are rough. I can also say that things certainly seem worse in the evenings. And most definitively I can say that I am done with alcohol. If the days I have more pain now are due to past alcohol consumption, it will be an easy choice to never have that again, even in moderation. I still hope that completely stopping seven weeks ago means I have at least helped to stop any further damage, and can maybe even start to allow some healing, even if a very slow process now.
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Old 09-02-2021, 01:13 AM #607
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Originally Posted by ajwinpain View Post
Wow, so whether I have small fiber neuropathy or not, and whether it has been caused by a Med reaction, alcohol, or both, I can say this is quite a roller coaster. Some days arenít bad. Some days are rough. I can also say that things certainly seem worse in the evenings. And most definitively I can say that I am done with alcohol. If the days I have more pain now are due to past alcohol consumption, it will be an easy choice to never have that again, even in moderation. I still hope that completely stopping seven weeks ago means I have at least helped to stop any further damage, and can maybe even start to allow some healing, even if a very slow process now.
Hey ajwinpain,

I think you have exactly the right approach and detached philosophical attitude that will enable you to make the fullest recovery possible. Why not aim for a full recovery? If you have alcohol induced PN then ceasing drinking inevitably means you will recover. The body is a great healer and will find a way to heal itself. You can help speed that recovery with optimum diet, exercise, supplements etc.

Nobody talks about the joy and contentment that discipline brings to life and that is what this thread has latterly become; a celebration of discipline.

So superficially we have Sesame Street enthusiasts! ( Counts who like to count!) But really its about the triumph of Discipline and hopefully an inspiration to those trying to find that discipline in their lives. I know it helped me.

Best wishes,
Atty
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Old 09-02-2021, 08:29 AM #608
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3683 days sober!

Welcome ajwinpain! I echo what Wide-O says and I emphasize trying to get off alcohol completely. Truth is, we don't need it and it only complicates things (mentally and physically). Good job on reading the WHOLE thread (both parts) as I am sure it's a lot of reading. I have never been part of a thread that lasted this long!! HAHA

For those who care, I am off for four days in the Smokie Mt's. Booked a log cabin with a hot tub and hope to get a a few miles of walking in...

Ice out!
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Old 09-02-2021, 08:49 AM #609
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I know I saw a brief reference to alcoholic myopathy by a poster Second Chances in part 2,
Hmmm, wonder what happed to SecondChances. Not seen a post from them in years?
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Old 09-02-2021, 04:39 PM #610
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Hey ajwinpain,

I think you have exactly the right approach and detached philosophical attitude that will enable you to make the fullest recovery possible. Why not aim for a full recovery? If you have alcohol induced PN then ceasing drinking inevitably means you will recover. The body is a great healer and will find a way to heal itself. You can help speed that recovery with optimum diet, exercise, supplements etc.

Nobody talks about the joy and contentment that discipline brings to life and that is what this thread has latterly become; a celebration of discipline.

So superficially we have Sesame Street enthusiasts! ( Counts who like to count!) But really its about the triumph of Discipline and hopefully an inspiration to those trying to find that discipline in their lives. I know it helped me.

Best wishes,
Atty
Thank you for your response! I do try and stay as positive as I can, but this has been a tough week. And yes, I certainly hope for a full recovery, but realize this is probably a long road, too.

And most of all, I absolutely applaud the long term discipline from many here. It is awesome! And the positive stories on here definitely help, too.
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