Dear NeuroTalk friends,

I had another EMG on Wednesday afternoon. The results were the same as they were 3.5 years ago. Some numbers were a tiny bit worse, but generally things were the same.

I've posted the results from 3.5 years ago at the bottom.

The problem for my neurologist is that he cannot identify the cause of my neuropathy. Almost everything has been ruled out. Since the neuropathy is only in my feet and legs, some possible causes are also ruled out, like toxic exposures.

The other interesting thing is that the neuropathy is obviously NOT progressing at all, which also eliminates some conditions that would include progression.

1. Does it matter if we find the cause?
2. It seems unlikely that even with a cause identified, there will be any treatment.
3. How can I assess how disabling this neuropathy is? I mean, I know what I can't do, and how it affects me. But is there any scale for assessment. My family just doesn't understand how it affects me. I would like to have something to show them that explains why all the exercise in the world won't make me better.

I also don't understand if this is a sensory neuropathy only, or also motor? I assume it is a poly neuropathy.

I also have some indications of autonomic neuropathy.

I have Sjogren's Syndrome, tho' always test negative on the blood tests. Since I am also immune deficient, I imagine that somehow contributes to the failure to test positive. That, and I know that more than 30% of those with Sjogren's test negative.

I am tired of all of this, for some reason. And after over 4 years, I am accepting this neuropathy and how it affects my life. My family still doesn't do a good job of accepting it, however.

I would just like to get on with things and let this part 'go'. I guess we don't get to choose?

Findings:
1. Markedly decreased amplitude of the right and left peroneal and tibial nerves.
2. Decreased conduction velocity of the right and left peroneal and tibial nerves.
3. Increased motor latency of the right and left peroneal and tibial nerves.

4. Increased sensory potentials of the right and left sural nerves.
5. Absent latency of the left peroneal and left tibial F-waves.
6. Delayed Latency of the right tibial F-waves.
7. Delayed latency of the right and left H-reflex.
INTERPRETATION:
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.

Knowing what is causing it can lead to treatment --mostly with IVIG and/or Rituxan.

Knowing a cause you could eliminate it from your future... vaccines, drugs, toxins.

Knowing what is triggering you ..could lead to some changes in lifestyle and use of specific supplements.

But PN is elusive, and if you are at a point of exhaustion, you don't have to do anything further if you don't want.

If you haven't had genetic testing yet for CMT, you might consider that, or not, depending on what you intend to do with that diagnosis. Since you don't react well to pain meds, the CMT diagnosis would only help you get proper pain treatment and supervision.

It is all just up to what you want and need at this point.

I feel for you. Possibly could you seek second opinion. I don't know where in North Carolina you live but if you could get connected to a neurology dept at Duke Medical School or some neurology Dept connected to a teaching hospital they usually are on cutting edge.
The reason I say that is I sawv2 neurologist snd got no answers. I got a referral to the hesdache center at Baylor U medical school. I just started having PN for reasons unknown but doctor I am seeing is very meticulous.
Wish yiu the best

--is certainly associated with neuropathy and neuronopathy:

http://neuromuscular.wustl.edu/antib...n.html#sjogren

Interesting thoughts!

My neurologist is a Duke University Faculty member, one of the top in his field. We retired to this area precisely because there are two medical research centers and hospitals here. My husband is a retired research immunologist who taught and did research at a university medical center for 25 years in Boston.

CMT is Charcot–Marie–Tooth disease, and highly unlikely since this PN appeared when I was 67. Up until then I rode a bike, learned to ski, could roller skate, dance, take long hikes. CMT is genetic and usually appears long before the age in which mine appeared.

One of the mysteries is that most external causes of PN affect both upper and lower limbs. Yet mine is ONLY in my legs and feet.

And most systemic causes are progressive, and yet mine hasn't changed at all.

I, personally, think that it was the antibiotic I took, OR possibly my Sjogren's Syndrome. And yet there's no way to know.

I DO have IgG infusions, and if the type of PN could be determined, we would know if much larger infusions might help. Although at this point the PN has been around such a long time (relatively speaking) that it may not respond well to any treatment.

Now it's Saturday, and I'm a bit removed from the testing process and the intense meeting with my doctor, so I'm not as exhausted.

I don't think other people understand how exhausting doctor's visits and tests are.

I will do the blood tests next Tuesday, as far from my last infusion as possible, just before the next one.

I am so relieved that all of my spine issues are 'normal for my age' and require no surgery. I'm doing quite well, really. It's just the difficulty moving around, and some of the discomfort in my feet that is disabling.

Thanks, ElaineD

IgG WILL skew lab results for many tests. The half-life of IgG by IV is 21-28 days. This may be different for SubQ since absorption is different, but it is still a blood product from about 2000 donors, so will alter some lab results.

Do you know what they will be running?

Charcot Marie Tooth disease (CMT) symptoms can become evident when you are young, old, or in-between. Or symptoms might never be that evident but you can still pass it on. As of 2008 there were fifty (50) types identified so far and there is no end in sight.

So I disagree with you as I do know some CMTers where the symptoms did not show up until much later in life; myself included. They too could do everything until then. And, by far, not all CMTers have the same symptoms. Symptoms vary greatly even within the same family.

As of now, there is no cure/treatment for any type of CMT. We deal with the symptoms. There is much research being done.

en bloc: I told my Neuro that I would be on IgG by the time he wanted to run the tests.

He said that I should take the tests at the end of an infusion period.

I agree that the IgG will still be in my system! But I think most of what he is looking for has to do with toxins.

I don't know what tests he's running. I'm not the least bit optimistic about finding anything. I think he just wants to cover every base in testing.

MrsD. if it IS CMT, I guess it is what it is, with no cure. Would it appear suddenly and then not have any progression? I went from perfectly FINE to profound neuropathy in about a year and a half. (2009) With no progression since then. I guess genetic testing is in order. My Immunologist has run some genetic testing, but it was mainly around my CVID.

I tried Jarrow Formula Methyl B-12 for about 18 months, at 45,000 mcg/day. Hoping that I would see some improvement.

In fact, I would say my foot drop is worse. Well, I gave it a good try.
And it seems that my Neurologist has NO interest in B-12 treatments. I had thought maybe injections would be more effective.

Since I had a 95% block of my LAD coronary artery ('the widow maker) that was cleared and stented in 1999, I feel that the past 14 years are 'gravy' and tho' they have been filled with one weird condition after another, I have had the joy of many years with grandchildren and friends.

So I think all of this is manageable, in one way or another.

Hugs, ElaineD

FWIW, in my case - alcohol induced - it's only feet - and that's quite common with alcoholics. Not saying that's your cause, just that it's not uncommon to only have it in the feet and/or lower limbs.

Mine is Sjogren's related and limited to profound pain in the feet and mild in the legs...yet nothing in the arms or hands.