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.

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.

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.

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?

--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

Here is a site which might help you. Scroll down to "Summary".

http://www.ncbi.nlm.nih.gov/books/NBK49247/

CMT is also known as Hereditary Motor Sensory Neuropathy (HMSN).

As far as polyneuropathy it just means several nerves are involved.

You referred to electrical tests which were positive. I assume you are talking about EMG/NCV testing. Referring to CMT Type 1, nerve conduction speed is slowed. In CMT Type 2, the nerve conduction speed is usually normal or mildly slowed but the responses to the stimulus are small. Just a bit of information concerning the testing.

As far as alcohol, moderate consumption is fine. Alcohol was taken off the medication alert list in 2004. If you over do then you would have balance problems, etc. and that would not be good for those of us who already have that problem. But moderate consumption is not a problem.

Susanne and Kitt. Thanks for all your thoughts and information.

I am unsure really. I guess that is how it is for all of us. This is why I have come to this internet site in the hope of getting people's opinion.

My Neurolgist diagnosed me with Mild Motor and Sensory Axonal Polyneuropathy. But I know that this could also be CMT Typre 2? I wish he could be more specific, but for now this is all they can tell me from the conductivity test and blood test. I have not had any DNA tests. I hope to get to the bottom of it myself and this is why I want to try everything like stopping alcohol. My Dad was not a big drinker.

Through my research and this includes information on CMT, they say if you don't use it then you lose it. I certainly don't want to over do it and I am now very aware of my condition and careful not to do too much excessive movements in work and in play.

I really like chatting to you both as I know no one who is in my condition and situation. Any help and advice is greatly appreciated. I actually want to meet people with my condition too one day.

At this present time, my father and friends all tell me not to worry and just get on with it. So for now I'm just going to have to do that. However, it's me that feels these nasty sensations in my feet and naturally I wish to somehow reduce them or at least get used to them and learn to manage them.

Thanks.