Is your homocysteine still high? You should have it repeated.

If still high you should switch to Metafolin...that is the active form that some people cannot make for themselves from the inactive folic acid in most common supplements.

Instead of ALA the newer R-lipoic acid stabilized may work for you better. Only 100mg of that is needed daily. (Doctor's Best).

your B12 should be methyl form for the same reason as the folic acid methyl form. And make sure you take it on an empty stomach for best absorption.

Did you have thyroid test done?

You weren't addressing me, but couldn't resist commenting. My feet also felt like "balloons", and of course, looked perfectly fine. Why don't you try Alpha Lipoic Acid? You can buy it at Walmart or anyplace else. If it works for you, you should notice a difference within a couple of weeks. Wash them down good, or you'll have heartburn. I take 900mg daily, but some report that 600 mg will work for them. ALA also helped me slightly with the pain. Neuro's aren't likely to prescribe pain meds without you giving something like Nortriptyline or Gabapentin a real try.

What in particular didn't you like about the Gabapentin's side effects & what dosage were you at?

I haven't had my lab work repeated yet, but will very shortly, as I see my GP Dr next month. I'm not saying you aren't right about the methyl B12, but since the body only will absorb a tiny amount, anyway, I wonder if a person will actually absorb more or is it hype?

I will give the Doctors Best R-Lipoic a try when I run out of stock in the ALA. I've got enough left probably for a couple of months.

Thanks Groucho for your reply. I was taking 300 mg 3x/day. I was so "high" on it, I would not drive-or ride my horses. I had tried one bottle of ALA and did not see any change. I have on order the R-lipoic acid that Mrs D recommends from Amazon. Even though the Dr's "think" my pn is genetic, I have been taking B12, Jarrow 5000 mcg, for about 4 months now. As there are no uppper limits for B12, I felt it would not hurt for overall health. My impression was that Gabapentin was not exactly a "pain" relieving drug. All my Kaiser dr's "poo poo" any mention of natural or vitimin treatments. I am so glad to have found Neurotalk-who's members support/inform each other from every aspect of treatment options.

J.

If you have the DNA mutation (called MTHFR polymorphism) that prevents methylation of B12 and folic acid you will absorb in the GI tract but the vitamins will not activate and therefore not lower your homocysteine. This test can be done with blood work. And it doesn't
even need a doctor's order and can be had on the internet.

1000mcg of B12 will be absorbed passively in the GI tract about 1%... about 10mcg. The RDA is 2-4 mcg a day from food.
This was done with a study, and I have it on the B12 thread.

So there are two phases to consider.

The DNA mutation is pretty common. At least 10% and some new info suggesting up to 30% ( a doctor came here a while back from a seminar suggesting the higher figure). I still only post the 10% until I see otherwise.

People with this genetic error develop elevated homocysteine, and hence damage to the blood vessels and heart leading to cardiovascular disease. But also the nerves will suffer because they use the methylated versions only of the B12 and folic acid.

No, they are not. That doesn't mean that you don't need them, but they prefer pain medication be handled by a family doctor or pain specialist who sees you more often, and can monitor your usage, reactions, and pain levels. In fact I was "dismissed" by my neurologist as hereditary neuropthies are not treatable and the only care is basically mechanical (AFO's, canes, etc.) or palliative. She did send me to Johns Hopkins for a second opinion and more testing, but her original dx of CMT was unchallenged.

What tests have you had? My EMG/NCS showed large fiber neuropathy, the skin biopsy at Hopkins showed advanced SFN. I have visible muscle wastage. My pain is all over the place, but the worst of it feels like it comes from the long bones in my legs, and fom the stiffness in my feet, ankles, and legs. It is primarily a crushing, twisting feeling. I also have pinched nerves at wrists and elbows, slight, occasional clawing in my hands, and pain and stiffness along my hands on the pinky side. It has definitely gotten a lot worse in the past few years, despite my neurologist's insistence that it "isn't supposed to hurt this much or get worse this fast." For most of my life I was merely clumsy and uncoordinated, about five years ago it started to get much worse.
If you have a good relationship with your PCP, I would start exploring pain medication options there. Many neuropathy patients with moderate to severe pain are on some combination of gabapentin, an anti-depressant, and an opiate.
Experimenting with what you have is probably not advisable long term, but if you were to find that it helps...be careful how you present it to your doctor. You want it to seem like his idea.

If the gabapentin was working, you may want to give it a longer trial. It is a very safe drug and sometimes the side effects pass after a while.

I first went to my Kaiser dr. 5 years ago and was misdianosed. Finally went back to new neuro at suggestion of gyno. I had the athena tests which were neg. Nerve conduction study results: "Abnormal nerve conduction studies of the lower extremities and left upper extremity (three extremities) with electodiagnostic evidence of a severe sensorimotor polyneuropathy with mixed axonal and demyelinating featuers with more prominent findings in the lower extremities." I have visual wasting in feet, no reflexes (including elbow), no feeling of vibration or coldness in hands, feet, legs. And thats just the start of Dr. findings. I have extreme stiffness in hands, ankles, and feet. Never thought about it being part of pn thought I was just getting old (51 but have had stiffness for years).For most of my life, I would consider myself as being a very gifted athlete. Now, it is really difficult to do most of the athletic things I did in the past...This pn is REALLY hard to take. Definitly have gone through a "mourning" period this summer.

Good point about informing dr. of pain med use. I really dont like my pc dr. at Kaiser, in fact, can't stand her. Have tried to switch to one that treated my mother and is VERY nice, but he always has a full load. I tried Gabapentin for about 1 month, but really don't know how to deal with the "high" side effects and be able to function on the farm. Any ideas? Thanks for sharing your info. It is greatly appreciated-

J.

My next question is: How did you arrive at that dosage? Did you take 300 mg the first day & jump another 300 the next day or something like that? If so, no wonder you zoned out! I tapered up slowly at the beginning, 100mg a day, and even then had a "high", when I hit 300mg daily, that wasn't enjoyable to me, but it started to fade after an hour or so. I had another one a few days later but was only half as strong as the first one. Now I can jump my dose by 300mg a day with very little "high" effect. If you raised your dose any faster than 100mg a day, I'd ask you Dr to taper you up slowly, maybe even moving up 100mg every other day, to get you where you need to be. It certainly was a "high" unlike anything I ever had from alcohol or marijuana (in my MUCH younger days), and definitely not enjoyable. I've seen pages here on the web about some Nuts who save up their pills to take them all at once for the "high". Now that's desperation!

Don't be afraid to ask your Dr about a slow taper. It's not likely he's ever had your experience OR personally taken Gabapentin & shouldn't give you a hard time about it. If he does, there are other Dr's out there.

Your findings and symptoms sound very much like mine. I didnt have the full athena diagnostics run, there didn't seem much point since overwhelming evidence to support CMT and no treatment. I may have it done so my children have more info, but as you noted, a negative result doesn't mean you don't have it. No doctor has ever been able to get a reflex from me either, although the Hopkins neuro proudly claimed he did, but it was too slight for me to notice! I was never able to run, skate, dance, etc. even as a child. We are the same age, and seem to be progressing similarly at this point, though.

Perhaps your neuro could refer you to a pain specialist? You should definitely try to find a helpful PCP, they are much more important than the neuros once you are diagnosed. A bad- unkind, mean, condescending doctor can cause depression and self-doubt that you certainly do not need on top of this challenging condition.

Have you found that you tolerate opiates like the hydrocodone better than the gabapentin? I do pretty well on them, not spacey at all, and much more able to keep up with some normal activities than without them. In fact my life would be pretty bleak without the relief from pain and fatigue. Still, a farm is a dangerous workplace, and I can understand why you would want to be very careful what you take.

Hi Groucho-yes, the Dr. gave me a prescription for 300mg 3x/day. Thats what I started on! I will contact him and ask for for a lower dossage to start. Thanks for letting me know another approach to starting the meds might work better-

J.