Have they determined anything about the seronegative Sjogren's? Do you have Sjogren's or not?

Have a good trip home, be very careful. I know it was all hard and physically demanding. Hope it was worthwhile. Get some rest.

Billye

Polyneuropathy has long been acknowledged to be a 'result' or at least what I would call co-morbid with diabetes. I have also read that even tight blood sugar control was not a variable in progression.

Why do you think that is that strict sugar control doesnt always stop the progression of PN? Does inflammation breed inflammation in a vicous cycle?

Polyneuropathy is very associated with diabetes. It's a given. The process is not known.

Polyneuropathy can preceed diabetes by up to three years.

I think diabetics need to control blood sugar as best they can, because our bodies are made to function best with certain blood sugar levels. Yes, high or low blood sugar level is bad for the body. I think people need to eat properly, exercise and take the best care of themselves that they possibly can.

There are also several types of diabetes, altho, they all result in malfunction of insulin production or metabolism.

However, has any one considered that perhaps the pancreas doesn't function well because there was some neurological malfunction that upset its function? Is it chicken or the egg? Pretty radical thinking.


Polyneuropathy identical to that which occurs in diabetics occurs in people without diabetes.

Small fiber neuropathy can stop the function of sweat and lacrimal glands...can it possibly interfere with the function of endocrine as well as exocrine glands?

Lest, I not have made myself clear in the last post.

Diabetes results in a cascade of dysfunction, high blood pressure>>>kidney damage. High blood pressure>>>blindness. High blood sugar causes vascular malfunction>>poor wound healing>>>amputations. Diabetes, either early onset or type 2, adult onset, usually due to metabolic syndrome is not a good thing.

Diabetes in young females predisposed them to pre-eclampsia and pregnancy failure or complications. Also, high birth weight infants are born to mothers, who altho not diabetic at that time, later develop diabetes. HMM. There is also gestational diabetes.

Thin, healthy people suddenly get type 1, or insulin dependent diabetes out of the blue...yet diabetes does run in families.

Diabetes is one of the biggest causes of functional impairment and life threatening complications. Not to mention, poor sugar control can leave you hyperglycemic or hypoglycemic, both of which can kill you, in pretty quick time frames.

I suspect that perhaps the vascular component of the diabetes could interfere with microvasculature that feeds small fibers.

What I am saying is even people who fastidiously control blood sugar are not usually able to stop progression of small fiber neuropathy. I would sure keep my blood sugar controlled if I had diabetes, with out a doubt, whether or not it is proven at this point or not to help my nervous system. I would assume that poor blood sugar control hurts every organ system, because it damages so many. But a diabetic who controls blood sugar fastidiously, and has progression of SFN can't do much more than that in terms of trying to prevent progression of SNF

Also, of importance is that Glucose Tolerance Testing, should be done on every one with SFN. Many people with SFN will have Glucose Intolerance or abnormal Glucose Tolerance Tests. Often times docs won't want to do GTT because of the new hemoglobin monitoring of blood sugar. I am not sure if the new hemoglobin testing gives the same information that the GTT does.

It is highly complex. I just had a muscle biopsy to see if I have a myopathy, with the thought that some of my symptoms may be myopathic, however, the neuologist, said, it is still likely neurogenic and myopathic changes may be due to neuropathic changes, which could be hereditary. If my muscle biopsy is abnormal which caused which, myopathy causing neuropathy, neuropathy causing myopathy, or some totally different thing causing both.

By the way, diabetes also causes myopathy.

Disease causes and categories are changing, rapidly, and yes, inflammation, autoimmune, and genetic/hereditary triggers are all being researched. In ten years, many diseases will have new names and new causes will be discovered.

But mind your blood sugar!!!

Such as those due to auto-immune 'cascades'. Being a 'beneficiary' of the latter, I appreciate all body defense and destroy actions/reactions. Hereditary or not. I wish I could get genetic testing to conclude positively or not that my own condition is genetic or not. Not ONE of my physicians seems to show a 'whit' of interest in this quarter.
To be diagnosed with a genetic 'connection', well, would enable me to receive certain therapies I would not qualify for under my current CIDP diagnoses [as CIDP is considered ACQUIRED Immune disease, not hereditary] Hereditary issues are considered 'primary' conditions and now more readily covered for many key therapies.
Face it, 90%+ of neuros do not go beyond diagnosis, and pallative treatments. Most cases, there IS nothing more than 'pallative' treatments. The rest we have to 'go fish!' on?

That was off track SOOOO FANFAIRE? HOW ARE YOU? - j

I suppose it will be a while before we know anything much conclusive on Fanfaire. I also assume she is enroute home???

On the genetic/hereditary thing....I think the docs use algorithims, basing them on the incidence of given conditions. When they hear hooves they are not thinking zebras and usually they are correct. It's a horse or a mule.

Hereditary testing is going to be the new ethical dilemma. Most hereditary conditions are not curable or treatable, a few are, but in general, they are not.

Depending on which 'hereditary' disease you have, yes, there are some organizations that provide some assistance. Most hereditary disease focused on kids, and now low and behold, they are finding adult onsets in some of these hereditary disease categories, as well as symptomatic carriers, which will in the long run increase the financial burden on the non-profits set up to fund raise. It will become a competition, I suppose, for limited resources.

Having a hereditary disease can end up with discrimination in jobs, health insurance etc. I would never search for a hereditary cause unless: you are financially secure, are not actively job seeking nor intend to be, are not looking for health insurance or life insurance, and you plan to keep this out of your children's health records, as they will also be discriminated against.

There was just an article in today's paper on genealogy services that offer to trace your origin via DNA and what the implications of that can be in the future. (They do them by number and try to insure confidentiallity, however, what is confidential anymore?!?)

Small fiber neuropathy is a component of a whole lot of hereditary diseases, I was floored to find out how many. I thought I knew them all. Hereditary implies they know the gene locus, and often, in most cases, really, they do not know the gene locus. They likely will in the future, but not now. It can get you lumped into a grab bag of some hereditary disease, say, for example a muscular dystrophy (of which there are a ton). Will you get help from MDA? I don't know. One hereditary amyloidosis may be treatable by liver transplant, so, if you are idiopathic and haven't had that test, it is worthwhile to have the fat aspiration for amyloid.

CIDP, means there is an inflammatory component. Have they established that with certainty. Inflammatory to me, indicates some autoimmune process.....Are you on IVIG? If it is hereditary, IVIG is likely not an option. Braces, orthotics and assistive devices are the option.

I agree that CIDP is also getting to be a grab bag of conditions...but I am assuming, that the 'inflammatory' in the diagnosis, means the docs have established that inflammation of some kind is hurting the nerves. I hope they came to that conclusion with a degree of certainty.

They can't just do blood tests or cheek swabs and check the entire genome for mutations.....it is immense. If you have a ball park idea, then you may get some other testing...but you have to have a ball park idea of what that genetic mutation could be....family history, ethnicity, and an history of a population that dwelled in some specific area that is associted with some specific diseases helps. Some folks just have no records to trace, others are more lucky.

The genealogy swabs they do for shared ancestry with other people signed onto genealogy websites, I suppose is a long shot possibility to help with ethnicity....but I don't know. I think they are more for hobby purposes.

Really examine family history if you think it could be hereditary....and have an idea of what diseases or disease family it could be leaning toward.

I am a long way from having any hereditary basis established for my own condition, and it is possible it may not be one. It is just one area to consider when there is nothing left but zebras....when the horse and pony show is all over and done with.