--it is possible for the onset of such neuropathies to be gradual, but you're right, rfinney, most often the onset is acute to sub-acute, and progresses relatively quickly.

There seems to be a bit of an age division here; those who are older, or who have ANA titers that are not as elevated, seem to show more likelihood of a slower, chronic development of symptoms. And, the different vasculitic conditions have variable patterns--neuropathy secondary to lupus or polyarteritis nodosa tends to come on quickly and aggressively, whereas that of Wegener's Granulomatosis or peripheral nerve specific vasculitis often comes on more gradually.

See:

http://www.neuro.wustl.edu/neuromusc...tml#vasculitis

Nevertheless, I agree that the patten that is described for Alan doesn't seem much like a vasculitic type neuropathy, and, of course, none of the recent testing for ANA-related conditions has panned out. It will be interesting to see of the immunoglobulin /protein studies show anything.

I love it when you guys talk dirty!!!!!



lol

I have absolutely no idea what you are saying (with ana titers, etc. etc.)

To put it simply... Do you think Alan's PN is auto-immune, or do you think it's from his spinal stenosis (remember, after Dr. Theirl's adjustments, he's a completely different person.


mel

--is that it may be autoimmune, but not ANA autoimmune, and given Alan's general level of health now, and the long period of time he's had symptoms, it's probably not due to a monoclonal autoimmunity (gammopathy) either. He may have one of those persistent "idiopathic" neuropathies for which autoimmune mechanisms are suspected, but no known antibodies are found. (As Dr. Latov says, they are likely to one day be discovered--then neuropathies associated with them will no longer be classified idiopathic.)

Dr. Goldfarb may want to test him for some of the known antibodies specific to peripheral nerve, such as anti-MAG, or anti-sulfatide, if the other tests don't show anything amiss.

It's possible it's due to spinal issues--actually, more likely due to compression on nerve roots in the lumbosacral/cauda equina area--but this may not show up definitively, either.

The old standby causes are impaired glucose tolerance--it's now know that can cause neuropathy well before a frank diabetes diagnosis--or some sort of toxic or infectious exposure, but if the latter factors caused it initially, it may be impossible to find those agents now.

Melody,

I agree with Glenn's speculations. Basically, many docs and folks like us on this board think that many, if not most, "idiopathic" neuropathies are very likely to be autoimmune in origin and that down the road the specific antibodies will be identified. There could be quite a few, actually.

In Alan's case, we are saying that his clinical features do not suggest a vasculitic neuropathy, that is, a neuropathy triggered by a circulation disorder. Glenn does point out that there are some vasculitic conditions that develop gradually but there does not seem to be any other evidence that suggests he has such a condition.

In the past few years, I think most practitioners, at least those at the forefront, who diagnose and/or treat neuropathy have come to the conclusion that impaired glucose tolerance, which is now "officially" recognized as a condition in its own right, can trigger neuropathy. I think many are considering the possibility that a significant number of "idiopathics" could fall into this category. So between the two - autoimmune and impaired glucose tolerance - we may eventually see the number of "idiopathics" fall dramatically.

rafi

Let's say the 3 hour glucose tolerance test comes back and they find out that it shows he has impaired glucose tolerance. Now what the heck does this mean and what do we do about it.

His sugar readings are around 84 (I know he's not a diabetic). But this impaired glucose tolerance is different from being a diabetic right?

So if it is found out that he has this neuropathy because he had impaired glucose tolerance, what do we do about it?

Does IVIG help this?

DOES ANYTHING HELP THIS?? I mean the only time he gets relief (sometimes the cymbalta works and sometimes it doesn't), is well he exercises and now he is doing yoga. This man is almost 60. He can't be doing what he's doing for the rest of his life. He'll bend himself into a pretzel and one day, he won't be able to get up off the floor.

So is there no relief for someone who is not a diabetic but it turns out they have impaired glucose tolerance (am I even phrasing this correctly).

He's going to want to get some answers eventually. I mean, to have all these tests, blood, (possible spinal taps), mri's , etc.etc, then be told "well, we think you might have impaired glucose tolerance (believe me, Alan never even heard of this), I'm just curious if there might be some answers.

Believe me, I know that many of you on these boards have a much much worse of PN than my Alan. I know this and my heart goes out to you.

I'm just trying to be like a pioneer in trying to find some answers that might SOMEDAY help anybody who has PN.

His neuro studied under Dr. Lantov who is somewhat of a pioneer in IVIG and neuropathyies and cells, (I'm not putting this right) but you understand.

We baby boomers are getting older and if someone soon doesn't open up and start some real research into the causes of the various neuropathies, well, what's going to happen to us as we hit our 70's and 80's.???

I mean, they can keep us alive with the Plavix, and antibiotics, and heart meds, and blood pressure pills, but if you have PN, you really want to take a hammer and bang yourself sometimes. This hasn't affected me thank god, but I will never forget the nights when Alan would jump off the bed at 1 oclock in the morning screaming his head off and I had to slap another fentanyl pain patch on him (and I wasn't supposed to slap any more patches on him) but he was in such pain in between the toes) and also it seems there was a really long scratch on the top of his foot (we could barely see it, he must have scratched his foot with the nail of his other foot) but it affected the neuropathy and he went out of his mind. This was before Dr. Theirl. I did not know what to do. He was going nuts so I ran into the other room where we had the patches and I found a 25 patch and just slapped it on his back. That brought him to 125 of the fentanyl. He just went "oooh, thank god". It worked immediately. He said "my foot was on fire". I put cold compresses on his foot and by the time the second patch wore off, the coolness of he compresses did some good. I mean, that night I got a real lesson in what PN is all about and how it can affect you painwise.

I mean, there has to be more than opiates to be the answer to this. Know what I mean?????

Mel

According to the current standards laboratory standards gnerally used in the US, someone who has a 12-hour fasting lgucose level between 65-109 is classified as normoglycemic. If the level is 110-125, they are classified as having impaired glucose tolerance. Above 125, they get a diagnosis of "frank" diabetes.

However, one can well imagine that blood glucose level is affected by a lot of factors--what one has last eaten, when, degree of physical activity recently done, what time of day the blood sample is taken (blood glucose tends to be lowest early in the day), etc. Moreover, the lab levels at which one is given these labels are fairly arbitrary (there's recently been a campaign to lower the "impaired glucose tolerance" category down to 100, for example), so many savvy endocrinologists are not comfortable using this test and these standards to diagnose diabetes/impaired tolerance. Most would rather at least get a set of Hemoglobin A1c levels over time--this measure of blood sugar tends to be more stable--and/or do glucose challenge through a several-hour glucose tolerance test. It's not rare for people with "normal" fasting blood glucose levels, and even "normal" hemoglobin A1c levels, to reveal an overreaction to glucose challenge during a multi-hour test that would lead an endocrinologist to suspect impaired tolerance or diabetes. (I know there were several people on the old Braintalk and at the Neuropathy Association boards who were diagnosed just that way.)

The better glucose challenges not only take a baseline blood sugar level before one drinks the measured glucose beverage, but a baseline insulin level, as well, and then they take blood and measure both glucose and insulin every half-hour for the duration of the test. Insulin and glucose levels interact--insulin drives glucose into the cells, and tends to rise and fall after it, in a time lag fashion--but in people who don't have good natural feedback mechanisms (this could be related to pregnancy, certain meds, or other health conditions in addition to glucose/insulin issues) there may be an overproduction of insulin to a given amount of glucose, driving the glucose levels down too low (reactive hypoglycemia), or an insufficent insulin response to a given amount of glucose, leading glucose levels to rise too much. The latter is impaired tolerance, and could signal developing diabetes. Indeed, even reactive hypoglycemia has an association with future possible impaired tolerance, as the insulin/glucose feedback mechanism has gone out of whack--the body is overproducing insulin, signalling insulin resistance in the cells, and if the body cannot at some point continue to compensate in that way, blood sugar may rise past healthy levels.

The levels that are accepted as being "normal" for blood glucose change during the course of the test. On my Quest results, you are allowed to be up to 159 at one hour, and up to 139 at two hours, and still be considered normoglycemic. At one hour, 160-225 signals impaired tolerance; at two hours it's 140-199. Above 225 at one hour or 199 at two hours signals diabetes. (The figures for pregnant women are slightly different.) As I said, there have been people who had normal fasting glucose levels who showed up with very high levels during the test and who were labelled with impaired tolerance or even diabetes.

I have the test done for at least three hours every year. The highest blood glucose level I ever received was 138 during the first hour. (My fasting glucose is generally in the 90-100 range.) But--my insulin levels tend to rise higher than the normal ranges during the test, and drive my glucose levels down into the 60's/70's during the second to third hour or so before the insulin recedes and my glucose normalizes. This is reactive hypoglycemia, and, along with the insulin levels, signals I have to be careful. It's why I try to keep muscle mass, which helps with insulin regulation, and why I take R-lipoic acid, and why I try to eat a sort of Zone like diet to keep too many wide swings in blood sugar from occurring.

Now, what does this have to do with Alan?

It's been speculated that most of us have some degree of insulin resistance impaired tolerance as we age, given our Western diet and lifestyles--and some of us from Northern/Western Europe may be more genetically prone to it than others. Of course, being overweight exacerbates this. I would think that given Alan's previous history (the weight, the heart issues), he probably had a degree of insulin resistance/impaired tolerance, at least at some point, and it may well have contributed to his symptoms. But, the two of you have made great lifestyle changes for him, and you may have dramatically reduced this, so that if this did contribute to his neuropathy, you may have arrested or even reversed the process. He may not show as impaired tolerant now, even if he once might have, and that's all to the good. (I'm trying to do a similar thing myself.)

Now, does this mean his symptoms AREN'T due to autoimmune issues, or to nerve pressure from the back? Not necessarily. He could be "co-morbid"--all, or any combination of these, could be involved. Neuropathy has many causes and mutliple things can damage nerves enough to produce symptoms. Often there's an "additive" phenomenon--diabetics are known, for example, to be more sensitive to nerve compression effects: a diabetic is more prone to develop compressive carpal tunnel than a non-diabetic, due to the fact that nerves in that area are already absorbing the blow that glucose dysregulation causes, so it's easier to produce symptoms from another casue than it would be in "normals". (I know my neuropathy has left me more prone to compressive effects, though, with its extremely acute onset, it's unlikely to have been caused originally be glucose problems--it's why I'm probably suffering now more form the cervical radiculopathy than someonw without "other issues" would.)

I'm certain Dr. Goldfarb will cover all the bases here, but it may be you never get any single "smoking gun" that explains Alan's neuropathy--he may have nerve assaults from a number of realms that add up to his symptoms.

Thank you so much for explaining all this to me.

Now we have to make the decision to see if he gets the spinal tap.

He has the prescription. I'm not sure what to do with it yet.

Dr. Goldfarb told us to call the Neuro-Radiology Department of Methodist Hospital and make the appointment for the spinal tap.

Since I know nothing about spinal taps, here are my questions.

Do I go with him? Is this the same as having a spinal where you can't pick up your head for 6 hours (that happened to my cousin Billy, they told him don't pick up your head, he stupidly did, and they had to give him morphine, the pain in his head was so bad). So do you go home right after (like after a colonoscopy?).

Is there a recovery period for example (I have to call the access-a-ride for a pickup time). So how long from the beginning of the procedure to when he is allowed to leave?

Thanks much.

Melody