[Kirky]

Recently been diagnosed with:

Motor and Sensory Axonal Polyneuropathy.

Recently upped the dosage from 600 mg to 1200 mg and had these side-effects:

1. In my eyes. They are a little blurred and twitch a bit
2. My balance is off
3. Lethargic

Worried about what is happening to me
Urgent action needed now.

Action Plan:

1. Stop drinking alcohol. A common Cause of nerve damage. I have been a heavy drinker for many years.
2. Cut down on sugar usage.
3. Start taking Vit. B12 supplement. (Jarrows Methyl B-12 5000)
4. Start using Thiamine/Benfotiamine.
5. Change my mind set from depressive to positive with a need to step up and accept things more for what they are and how they are.

Any tips from anyone would be appreciated. At a new low right now.

[Kitt]

Originally Posted by Kirky

Recently been diagnosed with:

Motor and Sensory Axonal Polyneuropathy.

Recently upped the dosage from 600 mg to 1200 mg and had these side-effects:

1. In my eyes. They are a little blurred and twitch a bit
2. My balance is off
3. Lethargic

Worried about what is happening to me
Urgent action needed now.

Action Plan:

1. Stop drinking alcohol. A common Cause of nerve damage. I have been a heavy drinker for many years.
2. Cut down on sugar usage.
3. Start taking Vit. B12 supplement. (Jarrows Methyl B-12 5000)
4. Start using Thiamine/Benfotiamine.
5. Change my mind set from depressive to positive with a need to step up and accept things more for what they are and how they are.

Any tips from anyone would be appreciated. At a new low right now.

Does anyone in your family have symptoms such as yours? Thank you for your reply.

[Kirky]

Originally Posted by Kitt

Does anyone in your family have symptoms such as yours? Thank you for your reply.

Yeah. My father has PN and takes the same medication. But he is very old and he never had this at such a young age. I am only 44 years old.

But it is what it is.

[Susanne C.]

Think about Kitt's question as where you go from here is a little different if your neuropathy is hereditary.
As for the Gabapentin, you don't really tell us whether you are suffering from the burning and electrical buzzes that Gabapentin may help with. It doesn't always help, but since it is a fairly safe medication it is routinely the first thing tried. For myself, and I have hereditary neuropathy, the Gabapentin does keep the burning and zaps under control. The visual blurring has not gone away as a side effect, but the fatigue and balance issues did, so your side effects might not persist. Mainly you have to determine for yourself if the medication is worth the side effects. You are not really at a therapeutic dose yet - 1800-2400mg.
The more you tell us about yourself the more help you will get. How old are you? Has the doctor suggested that the cause is alcoholic? Are your B-12 numbers low? Most nerve patients should supplement B-12, but low number alone can cause reversible neuropathy. What tests gave been done?
Lots of helpful and knowledgeable people here, don't be afraid to ask specific questions. Your plans sound sensible, but tell us more about where you are with this. Working? Hobbies? How has this affected your life?

[Kitt]

Originally Posted by Kirky

Yeah. My father has PN and takes the same medication. But he is very old and he never had this at such a young age. I am only 44 years old.

But it is what it is.

Just a thought, with something hereditary such as CMT symptoms can become evident when you are young, old, or in between. Or they might never be that evident.

[Kitt]

Originally Posted by Susanne C.

Think about Kitt's question as where you go from here is a little different if your neuropathy is hereditary.
As for the Gabapentin, you don't really tell us whether you are suffering from the burning and electrical buzzes that Gabapentin may help with. It doesn't always help, but since it is a fairly safe medication it is routinely the first thing tried. For myself, and I have hereditary neuropathy, the Gabapentin does keep the burning and zaps under control. The visual blurring has not gone away as a side effect, but the fatigue and balance issues did, so your side effects might not persist. Mainly you have to determine for yourself if the medication is worth the side effects. You are not really at a therapeutic dose yet - 1800-2400mg.
The more you tell us about yourself the more help you will get. How old are you? Has the doctor suggested that the cause is alcoholic? Are your B-12 numbers low? Most nerve patients should supplement B-12, but low number alone can cause reversible neuropathy. What tests gave been done?
Lots of helpful and knowledgeable people here, don't be afraid to ask specific questions. Your plans sound sensible, but tell us more about where you are with this. Working? Hobbies? How has this affected your life?

Susanne brings up some very good questions to think about.

[Kirky]

Thanks for all your kind advise.

I am 44 years of age and have had a very active life in sports, but also on the social side and this is why I mentioned alcohol. I have been given the electrical tests and they came up positive after complaining about the bad sensations I was having in my feet. True enough I was found to have a mild neuropathy. However, the Dr's were interested as my father is a 10-15 year sufferer of PN. But they found no connection between the two of us through blood tests taken. Which was a surprise. I am still awaiting other results like B12. The decision on stopping alcohol and other things on my list in my action plan are all my idea as I want to test to see if my symptoms can be reduced or at least slowed down.

My main question that I feel no one can really help me with is how much time to I have? My work requires me to be on my feet as I am a professional soccer coach. Will I be able to continue with this? If not am I doing damage to them now by still working and occasionally running and demonstrating. Even though recently I have slowed right down and try and Direct more and have others do the work for me. It may be better just to change my approach to my work. I guess the next stage is to go to complete management where all I do is talk and not deliver.

No one knows in my work that I have this condition. I am trying to hide it.

Kitt. What else can one take other than Gabapentin for the fuzzing in the feet? If I do go up to 1800 mg will my fuzzing just stop, but then have many side effects?

Wow so many questions Kitt. Thanks again for talking to me. I hope you are OK and finding a way?

[glenntaj]

--are very, very common with Gabapentin/Neurontin, and, indeed, with many of the other anti-epileptic medications used for neural pain and abnormal sensations (parastheses). They are at least partly due to the central nervous system downregulating effect these are designed to have (they were originally developed to control the spread of seizures).

Other side effects that are common with these drugs are fluid retention, carb craving, and weight gain. Many find, however, that with time the side effects lessen as the body adjusts to a given dosage.

Many who have neuropathy use a combination of meds to control the sensations; the most common pairing is an anti-epileptic like gabapentin or pregabalin with a small dose of anti-depressant like amitryptyline (Elavil). The two often seem to have a synergystic effect on the sensations. Some also use more traditional opiate based pain relievers, or some of the synthetic opiates (i.e., Tramadol).

It's very hard to determine what the ultimate prognosis is with neuropathy--a lot depends on the cause and what types of nerves are affected. "Axonal" refers to the primary damage here being to the axons, the transmitting "cable" of the nerves, as oppose to damage to the myelin sheathing, which can be thought of as the "insulation" of the cable (at least in those larger-fiber sensory and motor nerves that have such sheathing--"small fiber" nerves that subsume pain and temperature sensations do not have this sheathing so damage to them is by definition axonal).

You may need a lot more extensive work-up at a neuropathy center--if the cause is even findable (there are a lot of us around here who remain stubbornly "idiopathic").

Do see, as comprehensive test listings:

www.liajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

[Susanne C.]

You are not, as far as I know, damaging your feet by exercise, running, etc. you may find that you have more pain on days that you are very active, but this is not a sign that you have damaged them. I do not know how they determined through blood tests that you did not inherit this, unless the testing was the very extensive and expensive Athena panel. Did your father drink excessively?
If it is an alcoholic neuropathy you should pay attention to the supplements recommended here, and if you stop drinking you should recover, at least partially.
If it is a hereditary neuropathy it will progress, but it may be very slow. It is impossible to predict the future with this disease, and while I know how hard it is not to worry, you may be able to function at your current level for a long time.
As you are an athletic person and still retain the coordination to do your job, I think the outlook for you is excellent. It is hard not to catastrophize when you are first hit with this, but you will develop coping skills.
Gabapentin does not relieve the burning in all cases, but there are many other ideas here, some over the counter, which provide a measure of relief.
My symptoms started in childhood with extreme lack of coordination, progressed to numb toes by my early 30's, and have taken over my arms and legs at 52. As Kitt said there is no pattern that we can point to for when this hits and how it progresses, but I think you will find help here.

[Kitt]

Originally Posted by Susanne C.

You are not, as far as I know, damaging your feet by exercise, running, etc. you may find that you have more pain on days that you are very active, but this is not a sign that you have damaged them. I do not know how they determined through blood tests that you did not inherit this, unless the testing was the very extensive and expensive Athena panel. Did your father drink excessively?
If it is an alcoholic neuropathy you should pay attention to the supplements recommended here, and if you stop drinking you should recover, at least partially.
If it is a hereditary neuropathy it will progress, but it may be very slow. It is impossible to predict the future with this disease, and while I know how hard it is not to worry, you may be able to function at your current level for a long time.
As you are an athletic person and still retain the coordination to do your job, I think the outlook for you is excellent. It is hard not to catastrophize when you are first hit with this, but you will develop coping skills.
Gabapentin does not relieve the burning in all cases, but there are many other ideas here, some over the counter, which provide a measure of relief.
My symptoms started in childhood with extreme lack of coordination, progressed to numb toes by my early 30's, and have taken over my arms and legs at 52. As Kitt said there is no pattern that we can point to for when this hits and how it progresses, but I think you will find help here.

I was wondering too as Susanne pointed out. What type of blood tests were done. DNA blood testing thru Athena Diagnostics would be the way to go. However, it is very expensive even if you know what DNA blood testing should be done. Also, just because they do not find anything that does not mean that you do not have a type of it. (Speaking mostly about CMT). I hope you get an answer soon.

Also, in the case of CMT overdoing can exacerbate it. There is a fine line there.