[aussie cat]

I'd like a bit of feedback to ensure I'm on the right track with what I'm doing for my PN. A bit of history first. In October 2010, I had a bad fall in the gym while lifting heavy weights and injured the L5/S1 disc. I had surgery to remove fragments, which got rid of the excruciating pain, but now I have numbness along the outside edge of left foot (this started after I fell - before the surgery) and little toe (which twitches all the time) and, increasingly since the surgery, other unpleasant and sometimes very painful sensations in the left foot and calf. For a while the big toe and most of the right side of the left foot seemed unaffected, but now most of the left foot is weird. Also, now most of the toes on the left foot are weird/numb, with the big toe sometimes feeling ok and sometimes not. I get burning, feeling like a wire is wrapped around my little toe (or the next one) and around the heel, twitching, crawly skin, stabbing, electricity... I sometimes get burning in the right foot now, too, or sudden sharp pains, crawly feelings, etc. The crawly feeling can appear on an arm or on my face, scalp... anywhere. I also get a lot of pain in my glutes and hamstrings and along the sides of both legs, which is sometimes more disruptive than the foot pain, because I can’t sit for long. I’m changing careers now so I don’t have to sit all day. The last few days I’m getting a hot feeling in my left butt cheek. Or to the left of the injury site. Weird.

I hate drugs and had my kids without anything for pain, so I thought I’d be able to handle the pain I get from PN. Ha! It’s totally different and you don’t get a kid out of it. I was on Lyrica briefly but had to stop it because I had bad side effects. Endep was also prescribed but I didn’t respond well to that and it also gave me frightening side effects. I have a current prescription for Gabapentin, at 300mg x 3 times a day, a pretty low dose, I think, compared to some people. But I have stopped taking the Gabapentin (over a couple of weeks) and the pain is manageable.

I have noticed a couple of things that may be relevant. I can make the twitching of the little toe stop if I focus on it. I don’t physically prevent it from twitching (which doesn’t work), but if I look at it and relax my breathing the twitching stops. Unfortunately, I can’t spend the whole day looking at my little toe. Also, when I press the outside of my left calf the toe twitches furiously. I wonder if these things mean anything, or if anyone else has this sort of experience.

My best resource has not been my GP (family doctor) or the neurologist, but my chiropractor, although until now his treatments have helped more with general issues than with the PN. He has done some seminars recently in something called Quantum Neurology and has started treating me using that protocol. He has been treating me for over 25 years and I have a lot of confidence in him, although I have my doubts about this new protocol. However, I have noticed since his recent adjustments (3 in 3 weeks) that I have much less pain in the foot and less twitching. I am not getting my hopes up, though, because every time the symptoms have reduced in the past, they flared up again, worse and sometimes weirder than before.
My last scans were in 2011 when the symptoms had gotten bad and they couldn’t see any interference with the nerve/s. A steroid injection was a painful waste of time. When I described my symptoms there was no mention of PN – or anything that could be causing the symptoms. I have figured it out for myself – the chiropractor agrees and that is what he is currently treating. I have no confidence in my GP about this and don’t want to waste time seeing the neurologist again. I have a new referral to the neurologist for more scans, but what’s the point? The only reason I can think of to go back to him is so I have evidence if things get really bad...

Just yesterday I started taking the following:
Vit B12 – 2gm (I have not had my B12 levels tested)
B Complex (not a very potent one, but it’s what I already had)
C – 1000mg
Calcium + D – 333mg + 333iu
Magnesium chelate – 1gm
Fish oil – 3gm
Folic acid – 1000mcg
A-L-Carnitine – 1gm
A-L-Acid – 800mg
Coenzyme Q10 – 150mg (they come in 150gm caps)
Probiotics
Garlic

My diet is pretty good, with plenty of fruit n veg, lots of plain yoghurt with home made muesli, but maybe a little too much red meat. Fish every week. Very little dairy, wheat. I also walk most days and stretch a lot. I use a heavy duty massager on my glutes, hamstrings, calves and soles of feet.

I’ve cut my alcohol back to almost zero this week and I’m wondering if my reduced pain may be related to that? Or cutting out coffee, which I’ve done too, just this past week. Or stretching religiously... It’s hard to work out what is reducing the pain/symptoms. I know it’s not the supplements, because I just started them.

I know this is a long post, but I wanted to provide as much info as possible.

So I want to know if this looks ok and if there is anything else I should be doing. I’d appreciate any feedback I can get.

[glenntaj]

--you're doing pretty much what you should be doing.

The point is, you have a neuropathy problem somewhat different, and apparently less bodily systemic, than most people here have. Yours seems pretty directly traceable to mechanical/compressive issues with the spine and the nerve roots. That is technically a neuropathy (more accurately termed a radiculopathy), but not like one caused by diabetes, toxicity, autoimmunity, and the like.

If you are getting symptoms above the level of the injury (you mentioned a few intermittent ones) that might necessitate a scan higher up--perhaps an MRI of the cervical spine. Problems in that area can cause symptoms in the neck and arms, though depending if the spinal cord is involved symptoms may also appear lower. (Weightlifters are notorious for cervical as well as lumbosacral spine problems.)

It probably wouldn't be a bad idea to post to the Spinal Disorders forum as well (you could just copy your post) to see what those people might suggest:

http://neurotalk.psychcentral.com/forum22.html

Of course, if nothing shows up on scans, then a more systemic investigation might be called for. Nothing stops any of us from being "co-morbid".

[aussie cat]

Thanks, Glenntaj. I'll post on the other forum.

I'm not at all convinced that scans or further consultations will help me at all at this point, so I will give the supplements a try and see how I go.

I woke this morning without a twitchy toe for the first time in 2 and a half years. It must be the Epsom foot soaks, which I started a week ago. I can hardly believe it.

[Corbybird]

Aussie Cat,
I went to a neurologist (and other specialists and G.P.s) in Australia and it wasn't until I asked my G.P. about nerve conduction studies and being referred to a second neurologist who dealt with this type of problem that I was given a referral to a neurophysiologist i.e. a neurologist with special expertise in peripheral neuropathy, amongst other things. No doctor of any kind had mentioned these tests to me; it was from reading here that I became aware. The tests were then conducted which proved my diagnosis and with that now on my medical records I am accorded much better treatment (no longer told, or inferred, that I am crazy).
For me it has been of great import to have that on record for my treatment now and in the future. I hope your problems don't progress to the point where you can't function at all without meds but, if it does, you need a correct diagnosis to get the correct meds and, hopefully, before you become desperate.
Good luck!

[aussie cat]

Originally Posted by Corbybird

Aussie Cat,
I went to a neurologist (and other specialists and G.P.s) in Australia and it wasn't until I asked my G.P. about nerve conduction studies and being referred to a second neurologist who dealt with this type of problem that I was given a referral to a neurophysiologist i.e. a neurologist with special expertise in peripheral neuropathy, amongst other things. No doctor of any kind had mentioned these tests to me; it was from reading here that I became aware. The tests were then conducted which proved my diagnosis and with that now on my medical records I am accorded much better treatment (no longer told, or inferred, that I am crazy).
For me it has been of great import to have that on record for my treatment now and in the future. I hope your problems don't progress to the point where you can't function at all without meds but, if it does, you need a correct diagnosis to get the correct meds and, hopefully, before you become desperate.
Good luck!

The next time I go to the GP I'll ask about nerve conduction studies. You weren't/aren't in Brisbane by any chance? It's hard to know where to go. My GP referred me to the neurosurgeon who operated, and he may know how to operate, but he certainly doesn't know how to talk to his patients.

Thanks.