Tomorrow I will have the second EMG since my PN was discovered late in 2009.
It will be conducted by my new Duke Neurologist.

The first one was interpreted by my first neurologist as follows:

1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

Since that time, I have not had any progression as far as I can tell. No cause was ever found by the first neurologist, after extensive MRIs of my brain and spine, a spinal tap, etc. No work was done to establish any other sort of neuropathy, either.

My Duke Rheumatologist speculates that the Macrobid antibiotic that I took extensively for years for UTIs is the cause.

Now, what I want to know is if it has gotten any better. I took 50000 units of Jarrow Methyl B 12 for 1.5 years, and I had a slight sense that it was perhaps better.

However at this very minute I have that feeling there is a shard of glass in my left heel. It comes and goes, and lasts for hours. Clearly a nerve that is coming or going? Who knows.

I still can't walk or balance or stand for any time at all. Everything is an enormous effort. My toes are dusky purple from poor circulation due to the nerve damage.

So I'm eager to find out tomorrow what this neurologist thinks. My guess is that whatever he finds, it won't be the beginning of a wonderful cure.

I also had an MRI of my thoracic spine today, because last week a ruptured disk between T2-3 was found on an MRI of my cervical spine. I imagine the rest of my thoracic spine is ok, and only if there is a problem at the bottom,would it affect my legs.

More to follow.,

Hugs Elained

It will be interesting to see what your new results are and whether there is documented improvement that may, in fact, be related to B12 use.

Does it make a difference that the two tests are being done by different doctors...isn't this type of test somewhat subjective to interpretation?

I also thought that toxic neuropathies do usually improve over time in some cases...but I guess it depends on what the original toxic agent was and if permanent damage occurred. You do indicate that there might be "slight" improvement...so would it be safe to say that it hasn't progressed and gotten worse? That to me would also be a good reason to use B12...if it can halt progression.

Having that specific diagnostic terminology in your previous report, could lend you a chance to try Lidoderm patches.

You could try 1/2 patch behind the knee, just below the bend and see if it helps with your pain issues. The lidocaine in the patch will hit those nerves as they are not too far below the skin there.
I often use them there myself. It takes the patches a few days to get going, but you might find they work for you some or alot (like they do for me).

Dearest Angels,

I had the EMG today, and talked for a long time with the doctor. He is baffled about the cause, and wants to find out why I have the PN. He knows that it is unlikely it can be reversed, but he wants to KNOW WHAT caused it, and hopes perhaps it will be something that can be fixed.

He does NOT want to do a biopsy of the nerve. He thinks that it is a demyelinating neuropathy based on the way the nerves failed to respond in the EMG. He says taking part of a nerve will cause permanent damage and if the neuropathy can be treated, that nerve would never be normal if the biopsy is taken.

I'm tired of all of this tonight. I can tell. I keep trying to read the stuff he gave me. And I feel a bit overwhelmed. Honestly, when the PN was first diagnosed in 2009, my biggest fear was that it was progressive, and would get worse. That isn't the case, so at this point, I'm learning to live with it.

He talked about Gamma Globulin therapy to treat me (of the sort that would address the PN,not just the CVID). But he won't know what to do until he can identify the cause of the PN, then he will know how to proceed.

He kept saying maybe it was lead poisoning. LEAD? I don't think so. Well, he KNOWS it isn't lead poisoning, and yet…it seems like something toxic. Now I wonder if maybe the Calcium tablets (or any of the supplement) I took were somehow contaminated? Four years ago, or 5? That way lies madness.

I had the Shingles vaccine: then got PN? I travelled to China, and then got PN? I mean how will I ever know. I'll just do his tests.

Right now, I'm just tired.

Hugs, Elaine

My PN doesn't cause much pain, because most of the nerves don't work. I do get a sharp pain in my left heel, like a shard of glass is in it, but that is sporadic, tho' it goes on for several days at a time. And some tingling. But I take Cymbalta and Aleve…and I have a pretty high pain Threshold Mrs.D.

I tried the patch for my DDD in my cervical spine. I wasn't motivated to keep it up.

I do use a collar with beans of some sort in it that I microwave and put on my neck to get to sleep at night.

Right now I'm tired because I get tired easily and with two MRI's, an EEG, and now an EMG today, I feel all 'tested out'.

Thanks for your attention. I need to learn a great deal more about my neuropathy, just to be able to talk more sensibly to my Neurologist.

Elaine

Elaine,

Did he say whether the EMG results were worse, better or the same as the one in 2009? Was there ANY change at all?

I had the sural nerve biopsy he's referring to (back in 1997)...and yes I have permanent numbness from the site on the back of my calf down to (and including) the side of my foot. I also had horrible crippling phantom pain after it was done...for many months!! I'm SO glad he does not want to do this.

Calcium supplements from natural sources... like dolomite have been linked to heavy metal poisoning.

So are some algae products like chorella etc.

Most calcium today in other products is manufactured so heavy metals are not likely. But arsenic is common in the environment too... well water, etc.

I forgot if you have symptoms in the hands as well? A poisoning would be in the arms and hands as well as your legs.

You could get a hair analysis done. Some labs are good, and others not.

You might investigate Lyme disease. We have a poster here who
got the newest test just out in 2012.... It gave him an accurate positive, whereas the previous testing was not as clear.

http://neurotalk.psychcentral.com/post1018647-10.html

en bloc: My PN is exactly the same as it was in January 2010, when I had the first EMG. The variations were tiny, with a number that was 3.2 in 2010 being 3 yesterday, for example. My neurologist sat next to me and went over both exams side by side, but honestly I didn't truly know what was being tested in each field as they were compared.

I had hoped for some improvement because I had spent a year and a half taking recommended doses daily of Jarrow Formula Methyl B-12. (My B-12 was testing at over 1500 on blood tests). But there was no improvement.

When I was first diagnosed in 2009, and tested in 2010, my biggest worry was that the disease might be progressive. Since the cause hasn't been identified, I knew knew I didn't have several conditions that are known to progress, but also had no way of knowing that it would not progress.

It hasn't progressed in 3.5 years, so I don't have that concern now.

I've also learned to live with my current level of disability, for better or worse.

MRSD: My hands and arms are just fine.

We have never lived with well water. The houses we lived in for 16 years at the time this developed (PN in feet and legs) were both brand-new.

My guess is that it's all possibly related to my Primary Immune Deficiency Disorder (CVID) or to the Macrobid (Nitrofurantoin) that I took for chronic UTIs.
There are clear relationships between autoimmune conditions and neuropathies. I am one of the 25% of people with CVID who have autoimmune conditions, so I "hit the immune system jackpot" as it were.

I had developed Interstitial Cystitis (an inflammation of the lining of the bladder) in 2006 and therefore chronic UTIs (always with e-coli). The IC was diagnosed with cystoscopy in 2008.

The chronic nature of many of my infections is related to my Primary Immune Deficiency Disorder, and in my bladder to the IC, as well.

I have never taken any supplements that I didn't first check out with the NIH alternative medicine site.

My husband is a PhD Immunologist and taught and did research for 25 years at a Medical school. My younger son is also a doctor. I have an MBA, and am very leery of most alternative medicine.

I watch the fads come and go (I'm 71) and right now everyone is high on 'gluten-free' among dozens of other ideas.

As a child I tested allergic to EVERY THING EXCEPT eggs, meat, milk and peaches. Clearly I was reactive to the process of testing, IMHO. I did have severe eczema and respiratory problems, probably related to an early phase of my CVID, which wasn't diagnosed until I was 69, in 2011.

t do have some genuine allergies: Wool, lamb/sheep (meat and milk), and ragweed (including the pyrethrins in insecticides). Once upon a time everything had lanolin in it, and I had to avoid lanolin of course.

I don't know if I've been tested for Lyme disease. It is clearly a possibility as we lived for 30 years in the North East, and spent many summer in the woods in New Hampshire.

I've always been easily tired, achey, and generally not full of pep! I also used to have severe reactions to insect bites, (ants, black flies, spiders and mosquitoes) with festering sores that lasted for weeks. But that has stopped within the last 15 years or so. Why, I have no idea. Possibly because I don't spend time outside much, and we haven't lived in the NE since 1994!

My neurologist wants me to read these very technical research papers he gave me, hoping I will spot something in the writing that will give ME some ideas related to my experiences and environments.

I am having my first infusion (subcutaneous) today with a new IgG product, Gammagard 10%. If I'm not too tired I will examine the research papers this afternoon.

I've Googled everything to death, of course. In my heart I'm sure that this is not a reversible neuropathy. Something caused it in the period from 2006/7 and it was related to something that happened then, probably something I took, or ingested.

So far it's a mystery.

thanks for your attention to my situation.

Hugs, ElaineD